Frail older persons in the Netherlands - Sociaal en Cultureel Planbureau

Frail older persons in the Netherlands

Frail older persons in the Netherlands

Cretien van Campen (ed.)

The Netherlands Institute for Social Research | scp The Hague, November 2011

The Netherlands Institute for Social Research | scp was established by Royal Decree of March 30, 1973 with the following terms of reference: a to carry out research designed to produce a coherent picture of the state of social and cultural welfare in the Netherlands and likely developments in this area; b to contribute to the appropriate selection of policy objectives and to provide an assessment of the advantages and disadvantages of the various means of achieving those ends; c to seek information on the way in which interdepartmental policy on social and cultural welfare is implemented with a view to assessing its implementation. The work of the Netherlands Institute for Social Research focuses especially on problems coming under the responsibility of more than one Ministry. As Coordinating Minister for social and cultural welfare, the Minister for Health, Welfare and Sport is responsible for the policies pursued by the Netherlands Institute for Social Research. With regard to the main lines of such policies the Minister consults the Ministers of General Affairs; Justice; Interior and Kingdom Relations; Education, Culture and Science; Finance; Housing, Spatial Planning and the Environment; Economic Affairs; Agriculture, Nature and Food Quality; and Social Affairs and Employment.

© The Netherlands Institute for Social Research | scp, The Hague 2011 scp-publication 2011-32 Original title: Kwetsbare ouderen Translation from the Dutch: Julian Ross, Carlisle, uk dtp: Textcetera, The Hague Figures: Mantext, Moerkapelle Cover design: bureau Stijlzorg, Utrecht Pictures cover and interior: Stichting GetOud, The Hague isbn 978 90 377 0553 9 Distribution outside the Netherlands and Belgium: Transaction Publishers, New Brunswick (usa) The Netherlands Institute for Social Research | scp Parnassusplein 5 2511 v x The Hague The Netherlands Tel. +31 70 340 70 00 Fax +31 70 340 70 44 Website: www.scp.nl E-mail: [email protected] The authors of scp publications can be contacted by e-mail via the scp website.

content s

Contents List of contributors

9

Foreword

13

Summary

15

1

19

Introduction Cretien van Campen

PART I What is frailty?

25

2

Views of older persons on frailty and quality of life Aukje Verhoeven, Sjoerd Kooiker and Jos van Campen

27

2.1 2.2 2.3 2.4 2.5 2.6

What frail older persons themselves say What is important in life? Loss of independence What do older persons understand by the term ‘frailty’? Burden and capacity out of balance Summary Notes

27 27 32 34 36 37 38

3

Scientific definitions and measurements of frailty Robbert Gobbens, Katrien Luijkx, Ria Wijnen-Sponselee, Marcel van Assen and Jos Schols

41

3.1 3.2 3.3 3.4 3.5 3.6 3.7 3.8

Emergence of the concept ‘frailty’ Defining the concept ‘frailty’ Difference between frailty and related concepts A conceptual model of frailty Definitions of frailty Measuring frailty The Tilburg Frailty Indicator (tfi) Summary Notes

41 41 42 44 46 47 47 49 50

5

fr a il older per s ons in the ne ther l a nd s

PART II Which older persons are frail?

51

4

Frail older persons in the Netherlands Maaike den Draak and Cretien van Campen

53

4.1 4.2 4.3 4.4 4.5 4.6

Size of the frail older population Frail older persons living independently Frail older persons living in institutions Frailty, multimorbidity and disability Identifying frail older persons Summary Notes

53 56 60 62 64 65 66

5

Estimate of the number of frail older persons up to the year 2030 Cretien van Campen, Michiel Ras and Maaike den Draak

69

5.1 5.2 5.3 5.4

Trend in the number of frail older persons Sociodemographic trends in the older population Changes in the profile of the frail older population Summary Notes

70 72 75 79 80

PART III Development of frailty

81

6

The course of frailty Martijn Huisman and Dorly Deeg

83

6.1 6.2 6.3 6.4

A longitudinal study of frailty The course of frailty Six courses of frailty Does the course of frailty predict care or nursing home admission and death? Summary Notes

83 83 85

6.5

86 88 89

7

Physical frailty Martijn Huisman and Dorly Deeg

93

7.1 7.2 7.3 7.4

What is physical frailty? The course of physical frailty Six courses of physical frailty Relationship between course of physical frailty and psychological and social frailty in the longer term

93 94 95

6

97

content s

7.5 7.6

Does the course of physical frailty predict admission to a care or nursing home and death? Summary Notes

98 100 101

8

Psychological frailty Hannie Comijs

105

8.1 8.2 8.3 8.4

What is psychological frailty? Course of psychological frailty Six courses of psychological frailty Relationship between course of psychological frailty and physical and social frailty in the longer term Does the course of psychological frailty predict admission to a care or nursing home and death? Recommendations for research and policy Summary Notes

105 106 107

9

Social frailty Marjolein Broese van Groenou

117

9.1 9.2 9.3 9.4

What is social frailty? Course of social frailty Six courses of social frailty Relationship between course of social frailty and physical and psychological frailty in the longer term Does the course of social frailty predict admission to a care or nursing home and death? Recommendations for research and policy Summary Notes

117 119 120

8.5 8.6 8.7

9.5 9.6 9.7

109 110 112 114 114

122 124 127 128 130

PART IV Protection against frailty

131

10

133

Socioeconomic status Martijn Huisman

10.1 Socioeconomic status and health of older persons 10.2 Socioeconomic differences in frailty 10.3 Socioeconomic differences in care or nursing home admission and death 10.4 Summary Notes

133 135 136 139 140 7


11

Housing and care Alice de Boer, Debbie Oudijk and Marjolein Broese van Groenou

143

11.1 11.2 11.3 11.4 11.5

Policy and research The housing and care situation of older persons Course of frailty Changes in the housing and care situation Summary Notes

143 145 149 152 156 157

12

Local authority support Anna Maria Marangos and Mirjam de Klerk

161

12.1 12.2 12.3 12.4 12.5 12.6 12.7 12.8

The Social Support Act (Wmo), a broad piece of legislation Frail older persons with a disability Differences in use of and need for Wmo support Who receives Wmo-support? Who does not receive Wmo-support? Does Wmo-support help? What else could the Social Support Act (Wmo) do? Summary Notes

161 162 163 164 165 166 167 168 169

13

Nursing and care Cretien van Campen and Maaike den Draak

171

13.1 13.2 13.3 13.4 13.5 13.6

Older persons who are frail, in need of care and receiving care How many frail older persons receive nursing and care? Frail older persons without nursing and care Trends in frailty and demand for nursing and care Discussion and recommendations Summary Notes

171 173 174 175 177 178 179

14

Frailty and maintaining quality of life. Concluding discussion Cretien van Campen

181

Literature

189

Publications of the Netherlands Institute for Social Research | scp in English

201

8

lis t of contributor s

List of contributors Marcel A.L.M. van Assen is an assistant professor at the Department of Methodology and Statistics, Tilburg School of Social and Behavioural Sciences, Tilburg University, the Netherlands. His research interests include mathematical psychology, mathematical sociology and statistics. Alice de Boer is a senior researcher at the Netherlands Institute for Social Research | scp. After graduating in social sciences at Wageningen University, she worked at Utrecht University and the Dutch National Institute for Public Health and the Environment. Her work focuses on the fields of (informal) care and gerontology. She has worked at scp since 2000, and has also edited and contributed to numerous national policy reports and publications. Marjolein Broese van Groenou is a professor at the Department of Sociology at v u University Amsterdam, where she holds the n vg chair in Informal Care in a Gerontological Perspective. She is involved in the Longitudinal Aging Study Amsterdam. Her research is focused on informal care and the social participation of older people. Cretien van Campen is principal investigator in policy research in relation to older persons and well-being at the Netherlands Institute for Social Research | scp in The Hague. He has edited and contributed to national policy reports on the personal and social wellbeing of older persons. His studies on the quality of life of vulnerable groups in Dutch society have appeared in international journals, books and policy papers. Joseph P. van Campen is head of the geriatric department at Slotervaart Hospital in Amsterdam and is affiliated to the Department of Family Medicine at v u University Amsterdam: (v umc). He is involved in geriatric research projects focusing on polyphamacy, gait, cognition and delirium. Hannie Comijs is an associate professor at the Psychiatry department of v u University Medical Center Amsterdam and the g gz inGeest mental health care institute, also in Amsterdam. She is involved in the Longitudinal Aging Study Amsterdam (l a sa) and is principal investigator in the Netherlands Study of Depression in Older persons (nesdo). Dorly J.H. Deeg is Professor of Epidemiology of Ageing at v u University Medical Center Amsterdam, and scientific director of the Longitudinal Aging Study Amsterdam. Her work focuses on the fields of epidemiology (public health) and gerontology. She participates in several European projects. She is editor-in-chief (together with Prof. H.-W. Wahl) of the European Journal of Ageing and chair of the Netherlands Association of Gerontology.

9


Maaike den Draak worked in the Care research group at the Netherlands Institute for Social Research | scp. Her research interests included utilisation of (home) care, older persons in institutions and informal care. She holds a PhD in Demography from the University of Groningen, the Netherlands. Marion Duimel studied Social Gerontology. She is a researcher and, together with Ingrid Meijering, is founder and director of Stichting GetOud, a foundation which runs fun, creative projects aimed among other things at improving perceptions of older persons. Marion is responsible for the portraits of older persons in this report, all of whom are residents of the ‘Het Uiterjoon’ residential care centre in Scheveningen, the Netherlands. In the most recent GetOud project, almost 50 older persons were portrayed in their dream occupations in their youth; the project also included the production of a photo book and a national exhibition. www.getoud.nl. Robbert Gobbens is manager of the Master’s Programme in Advanced Nursing Practice and a senior researcher at Rotterdam University of Applied Sciences in the Netherlands. He has been involved in research on frail older persons since 2005. He has recently published a number of international scientific articles on frailty. He worked as a district nurse for ten years and has experience in teaching on the nursing degree programme. He is chairman of the Teachers section and chairman of the Chronic Care board of the Dutch Nursing Association (v&v n). Martijn Huisman is a psychologist and epidemiologist. He works part-time as an assistant professor at the Department of Sociology of v u University Amsterdam and an assistant professor at the Department of Epidemiology & Biostatistics at the e mg o+ Institute of Health and Care Research at v u University Medical Center in Amsterdam. He is a senior researcher in the Longitudinal Aging Study Amsterdam (l a sa). His research focuses on socioeconomic health disparities in old age. Mirjam M.Y. de Klerk is a senior researcher at the Netherlands Institute for Social Research | scp. After graduating in Psychology at Leiden University, she worked at Limburg University and Erasmus University and conducted several studies on care for older persons. She has worked at scp since 1997 and has published several books and articles on older persons and persons with disabilities. Her main interests are the life situation of older and disabled persons and the care consumption (both formal and informal care) of different vulnerable groups in the Netherlands. Sjoerd Kooiker is a senior researcher at the Netherlands Institute for Social Research | scp. His research interests revolve around the citizen’s perspective on healthy living and health care. Katrien G. Luijkx is senior researcher and research manager at the Academic Collaborative Chronic Care Centre at the Tranzo Academic Centre for Transformation in Care and Welfare at Tilburg University in the Netherlands. As a supervisor with a background in 10

lis t of contributor s

the social sciences, she is involved in research on different aspects of ageing, such as frailty, small-scale living for older persons with dementia, care arrangements and the Social Support Act which was introduced recently in the Netherlands. Anna Maria Marangos is a researcher at the Netherlands Institute for Social Research | scp. She is currently engaged in an evaluation of the Dutch Social Support Act (Wmo) which is being carried out by the Care research group at scp. Debbie Oudijk is a researcher at the Netherlands Institute for Social Research | scp. Her research activities lie in the fields of care for older persons and informal care. Michiel Ras is a senior researcher at the Netherlands Institute for Social Research | scp. He studied Physics at Leiden University and has worked at scp since 1991. After carrying out research in the field of income (distribution) and the income effects of policy measures, his research has since focused on the housing market behaviour of households and on care for persons with intellectual disabilities. He regularly assists in compiling population forecasts aimed at gaining an insight into the future care needs of households. Jos M.G.A. Schols is Professor of Older Persons’ Care Medicine at the Department of General Practice, c a pr hi School for Public Health and Primary Care, Maastricht University, the Netherlands. His research activities are concerned with the epidemiology of chronic care, rehabilitation in chronic care (in relation to post-stroke as well as geriatric patients) and the transformation of chronic care (e.g. innovative care models and care services, chain supply of care, new models of medical care, etc.). Aukje Verhoeven works as a PhD student in the Department of Clinical and Health Psychology at Utrecht University. In her research she focuses on self-regulation and eating behaviour, and she is studying an intervention aimed at changing unhealthy snacking habits. She completed her internship and was employed at the Netherlands Institute for Social Research | scp. Ria Wijnen was a Reader at Avans Hogeschool, Breda, the Netherlands. Her current activities are concerned with quality systems in home care for older persons and care innovation. She is a member of the boards of Regionale Stichting Zorgcentra De Kempen, Bladel, the Netherlands, and of the Dutch Society of Gerontology.

11

fore word

Foreword Sadly, old age is often accompanied by not just one, but many disabilities. A growing group of older persons are vulnerable to severe health problems as a result of an accumulation of (minor) physical, psychological and social deficits, which can lead to disabilities in their daily functioning, admission to a care or nursing home or death. It is not a simple matter to identify frail older persons at an early stage, because initially they are often reasonably well able to fend for themselves and only begin requiring more intensive care in the longer term, when they face a setback. Older persons’ organisations, care professionals, care institutions, local authorities and central government in the Netherlands are keen to help the frail older population, but are largely in the dark as to who those older persons are and how large a group they form. The Dutch Ministry of Health, Welfare and Sport (v ws) instructed the Netherlands Institute for Social Research | scp to carry out an exploratory study of frail older persons in the Netherlands. scp has reported regularly on the life situation and well-being of older people since the 1990s; this thematic report fits in with that line of research. Numerous research institutes and organisations collaborated in compiling this report. We would like to thank Prof. Dorly Deeg, Prof. Marjolein Broese van Groenou, Dr. Martijn Huisman, Dr. Hannie Comijs (v u University Amsterdam), Dr. Jos van Campen (Slotervaart Hospital), Dr. Robbert Gobbens, Dr. Katrien Luijkx, Dr. Marcel van Assen (Tilburg University), Dr. Ria Wijnen-Sponselee (Avans University of Applied Sciences) and Prof. Jos Schols (Maastricht University) sincerely for their contributions to this report. We would also like to extend our thanks to the external members of the reading committee for their critical and constructive comments. The committee members were Wim van Minnen (cso, the umbrella organisation for older persons’ organisations), Prof. Marcel Olde Rikkert (Radboud University Nijmegen Medical Centre, Geriatrics department), Klaske van der Meulen and Dr Pieter Hovens (Ministry of v ws, Social Support Directorate), Helma Slingerland (Ministry of v ws, Public Health Directorate) and Pieter Roelfsema (Ministry of v ws, Long-term Care Directorate). We greatly appreciate the valuable advice and comments on earlier versions of this report by Prof. Anne Margriet Pot (Trimbos Institute), Prof. Ruud Kempen (Maastricht University), Dr. Hein van Hout (v u University Amsterdam), Dr. Karianne Jonkers (National Older Persons Care Programme), Dr. Marijke Mootz (ZonMw – Netherlands Organisation for Health Research and Development) and Dr. Else Zantinge (r i v m – National Institute for Public Health and the Environment). Interviews were also held with frail older persons for this report, and photo portraits were created. Thanks to their willing cooperation, the hospitality extended by the Geriatrics department at Slotervaart Hospital in Amsterdam and the Het Uiterjoon residential care centre (Respect Care Group) in Scheveningen, as well as the creative efforts of the Stichting GetOud foundation, which produced the photos with quotations, frail older persons have been given their own voice in this report. Prof. Paul Schnabel Director, Netherlands Institute for Social Research | scp 13

summ a ry

Summary Frail older persons have become an important policy target group in recent years for Dutch government ministries, welfare organisations and senior citizens’ organisations. But who are the frail older persons in the Netherlands? At the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research | scp sought answers in this study to the following questions: What is frailty? Which older persons are frail and how many frail older persons are there in the Netherlands? How does frailty develop during the lives of older persons? What protects older persons against frailty? What is frailty? Older persons do not think about themselves in terms of frailty; they rarely use the word ‘frail’ to describe their situation. They are mainly concerned with their quality of life, asking questions such as ‘what is important?’, ‘what do I value?’ and ‘what gives meaning to my life?’. The older persons who were interviewed for this study – all of whom had been referred by their gp to a geriatric clinic on account of their frailty – cited health, life partner, children and grandchildren and other close relatives as being ‘important in their lives’. Loss of health and relationships, and anxiety about that loss, would severely undermine their quality of life. They also expressed a desire to continue living independently for as long as possible. When asked what the term ‘frailty’ meant for them, the respondents gave very different answers, for example ‘being insulted’ or ‘losing your way’. Others mentioned health risks, which comes closer to medical views about frailty. Most respondents talked mainly about the causes of social frailty, such as the loss of a partner and social contacts, today’s harder society and being dependent on others. Varying ideas are current among health professionals about what constitutes frailty in older persons. The many definitions of the concept make it difficult to arrive at a uniform identification of frail older persons. Health professionals and researchers either opt for a narrow approach which focuses purely on physical frailty, or for a broad approach which also takes into account psychological and social frailty. The term ‘frailty’ is used primarily as an heuristic or directional term to refer to risk groups and to organise care, rather than as a diagnostic tool. This report adopts a broad approach: frailty in older persons is a process involving the accumulation of physical, psychological and/or social deficits in functioning which increase the risk of adverse health outcomes (functional disabilities, admission to an institution, death). Several measurement instruments are available in the Netherlands to identify this broadly interpreted frailty. If someone shows signs of frailty (i.e. achieves a certain score on one of these measurement instruments), an investigation is carried out by health professionals to pinpoint precisely what the problem is. Based on the outcome of the investigation, health professionals can make a decision in consultation with the patient on the most appropriate care and support. 15


For the sake of consistency, one measurement instrument, the Tilburg Frailty Indicator (t fi), has been used throughout this report; the only exception is chapter 12 on local authority support, where the Groningen Frailty Indicator (gfi) is used. The two questionnaires cover more or less the same topics and measure roughly the same concept. The t fi measures frailty on the basis of 15 questions about strength, diet, stamina, mobility, physical activity, balance, hearing and vision (= physical domain), cognition, mood and coping (= psychological domain), being alone, social relationships and social support (= social domain). The physical domain in the t fi corresponds with the narrow interpretation of frailty. The broader interpretation and measurement of frailty overlaps with the notions of ‘quality of life’ and ‘successful ageing’, which are also used in research on the older population. Measurements of perceived quality of life and subjective well-being are related to measurement of frailty in older persons. The broad interpretation of frailty sets itself apart from concepts such as ‘multimorbidity’ and ‘physical disabilities’ by emphasising not just organic and physical problems, but also psychosocial problems as experienced by older persons themselves. Empirically, however, there is a good deal of overlap between the populations of frail older persons, older persons with multi morbidity and older persons with long-term physical disabilities. There is a small group of frail older persons without multimorbidity or severe long-term disabilities; this group of frail older persons live independently, are relatively young and are frail primarily in the psychological and social domains. Which older persons are frail? Based on a broad definition of frailty, it is estimated that there were more than 600,000 frail persons aged 65 years and over living in the Netherlands in 2007 (based on the t fi). Most of them – over 500,000 persons – were living independently; the rest were living in care homes or nursing homes. Roughly a quarter of over-65s living independently are frail. The percentage is much higher among people living in institutions: three-quarters of care home residents and virtually all residents of nursing homes are frail. Frail older persons are more often very elderly, women or living alone and more often come from the lower socioeconomic classes. However, the decisive factor in their frailty is having one or more diseases (multimorbidity) and having moderate or severe f unctional disabilities (in relation to mobility, personal care and/or performing domestic tasks). According to the scp population model, the number of frail persons aged 65 years and over in the Netherlands is likely to increase between 2010 and 2030 from just under 700,000 to more than one million. That is an increase of more than 300,000 frail older persons over the next 20 years. On the other hand, it is roughly 100,000 fewer than might be expected on the basis of current demographic forecasts. The percentage of frail over65s will fall slightly over the same period from 27% to 25%. In particular, the rising education level of older persons mitigates the increase in the number of frail older persons. According to scp forecasts, the profile of the frail older population will also change over the next two decades. From around 2025 onwards, the percentage of people aged 16

summ a ry

over 85 in this group will increase. The share of older persons who are divorced or have never married will also increase, though these are relatively small groups. Similarly, the percentage of people with mild disabilities, also a relatively small group, will increase. To date, this frail group has received little attention from health professionals and policymakers. Development of frailty Frailty is not a state, but a process. For our study, a group of over-65s were monitored over a period of seven years. During that period (in which the over-65s became over-72s), the percentage of frail older persons in the group increased from 22% to 28%. Frailty can develop along various pathways; we distinguished between six progression pathways in this study. 39% of the monitored group of older persons remained alive without becoming frail; 16% died without having been frail; 6% were temporarily frail (initially frail, later not); 13% became frail during the period studied; 7% were frail throughout the entire period; and 20% died after having been frail for a time. The development of frailty was found to be an important predictor of admission to a care or nursing home and of death. Frail older persons living independently were found to be five times more likely to be admitted to an institution within a few years than non-frail older persons. Frailty was also found to be a predictor of death; 22% of the consistently frail group died within three years, compared with 15% of those who became frail and 6% of those who remained non-frail throughout the period. An assessment was carried out of whether the older persons studied were physically, psychologically and/or socially frail. The proportion of physically frail persons in the study population increased over the seven-year period from 10% to 17%. This increase was determined chiefly by relatively sharp increase in difficulty with walking, difficulty in maintaining balance and physical fatigue. The share of psychologically frail persons in the group studied increased from 22% to 27% over the seven-year period. In particular, these older persons developed more difficulties with memory, while feelings of gloominess, anxiety and helplessness also increased. More women than men, and more 65-85 year-olds than over-85s, were psychologically frail. Widows/widowers and persons with multimorbidity were most often psychologically frail. The proportion of socially frail persons in the group studied increased over seven years from 21% to 23%. Social frailty increased mainly because the older persons concerned ended up alone and began missing contacts. Those who participated little in social networks, persons who were widowed or divorced, persons with small networks, persons who were not religious and persons who did not do voluntary work were relatively frequently socially frail. Analysis of the parallel course of frailty in the three domains revealed a new, previously unknown dynamic. The course of physical frailty was found to be associated more closely with the course of psychological frailty than with social frailty. Older persons who were physically and/or psychologically frail were more likely to be admitted to a care or nursing home and to die than older persons who were not frail. A relationship between social frailty and a greater chance of admission or death was not empirically proven. 17


Protection against frailty The exploratory study of the determinants and dynamic of frailty in the older population can provide pointers for policy by identifying protective factors, both environmental (socioeconomic status and residential situation) and in the form of support and longterm care (local authority support, nursing and care). Higher socioeconomic status was found to offer protection against frailty in later life. However, this protective power was demonstrated only for individual socioeconomic status, something which is determined among other things by education level and household income. No correlation was found between frailty and non-individual determinants of socioeconomic status, such as education level of the parents and status of the residential neighbourhood. The relationship between the residential and care situation of older persons and their frailty is still unclear. Moving to a single-floor dwelling was found not to be related to a change in frailty: older persons who live in accessible housing are just as likely to experience a decrease or increase in frailty as other older persons. Objective characteristics of the residential setting, such as degree of urbanisation or average property tax value, also showed no relationship with frailty. A relationship was by contrast found with the perception of the residential setting; older persons who did not feel safe in their residential neighbourhood were more often found to be long-term frail. Precisely where the cause and effect lie in this relationship is something that requires further investigation. Frail persons aged over 75 years with moderate or severe disabilities and a low income more often received individual help funded under the Social Support Act (Wmo). A quarter of frail older persons who were not receiving Wmo-funded support also received no support from an informal carer. They were aware of the Wmo, but virtually all of them stated that they did not need support, despite the fact that they were frail. Various explanations can be put forward for this: it may be that people avoid care and support; they may not be aware of their frailty; or they may indeed not have required any help at the time of the study. Six out of ten frail older persons had received nursing and care in the 12 months prior to the study, funded through the Wmo (organised by the local authority) or the Exceptional Medical Expenses Act (aw bz) (organised by the national Needs Assessment Centre (ci z)); four out of ten had received care at home (organised by the local authority or the ci z); two had received aw bz-funded care in a care or nursing home. Those who had not made use of nursing and care services were younger than the frail service-users on average and were more often male. They also more often lived with a partner and had fewer mobility disabilities. As stated earlier, a quarter of the older population in the Netherlands will be frail in 2030, and that quarter – assuming that the present provisions are continued – will then make use of publicly funded care (organised through the aw bz and/or Wmo). There is some overlap between the groups of frail older persons and the care-users, but if present policy remains unchanged it is likely that around 40% of frail older persons will receive no nursing or care. Early identification of frailty in older persons by a gp or Wmo assessment officer could however reduce the percentage of persons receiving no care and could help defer institutional admissions.

18

introduc tion

1

Introduction Cretien van Campen

Mr and Mrs H. lived together for many years without health problems. Ten years after Mr H.’s retirement, they decided to move to the village where he was born. Mrs H. did not know many people in the village at that time. A year later, Mr H. died suddenly of a heart attack, leaving Mrs H. alone. Following the sudden loss of her husband, she went through a period of mourning. She was depressed and had trouble sleeping. She still did not know many people in their village and felt excluded by the remoteness of the villagers. Of her four children, only her daughter visited, once a week. She observed that her mother was becoming forgetful. Mrs H. lived in a large house with a garden that required a lot of upkeep. Despite her minor physical ailments, occasional mental dips and a lonely life in her neighbourhood, there was nothing wrong with Mrs H. which warranted a visit to the doctor. Mrs H. believed she was functioning well, though others regarded her as brittle and frail. A year later, however, Mrs H. fell from a kitchen stepladder and her health suddenly deteriorated rapidly. She was no longer able to run the household alone and was afraid to ask for help from neighbours; she received little support from her children. On the advice of her children, she asked to be assessed for admission to an institution, and shortly afterwards she moved into a care home. She did not thrive there, however; she felt lonely and found it increasingly difficult to talk to others. When her cognitive problems worsened, she was transferred to a closed unit in the psychogeriatric department of a hospital, where she died three months later.

This fictional case study, based on accounts of frail older persons from this and other studies, illustrates what frailty can mean in practice. Mrs H had always been healthy, but a traumatic event had brought about great changes in her life. Subsequently numerous minor physical, psychological and social problems had accumulated and she gradually became increasingly frail until, following an accident in her home, things suddenly went downhill very steeply and Mrs H. was noticed by the professional care system. She ultimately received help, but her decline was very fast and her quality of life rapidly deteriorated physically, psychologically and socially. The successive carers and health professionals from whom she received help, from her daughter up to and including the nursing home doctor, had the feeling that, if they had spotted earlier that she was becoming frail, just a few interventions, for example a geriatric check-up, help in the home, support from a welfare worker and/or a few adaptations to her home, would have been enough to give her a more agreeable life in her final years. Suppose it had been possible to detect Mrs H.’s increasing frailty at an early stage. She would then have been aware of her own frailty and would have been able to decide to call in help earlier or to structure her life slightly differently. Her daughter would also have been aware of her mother’s decline sooner and could have decided to visit more often to see how she was getting on. If her doctor had recognised Mrs H.’s frailty sooner, he could not only have investigated her complaints, but might also have asked a practice nurse to make a home visit for a detailed interview and review of her home situation. 19


This would probably have led to other care professionals being brought in and to the creation of an integrated care package for Mrs H., incorporating home care services, community workers and/or local authority services. Her cognitive decline might have been detected sooner if she had undergone a geriatric examination in hospital, and day-care might have been an option for her. Her admission to the care home and later the nursing home might have been delayed and possibly rendered unnecessary if she had received integrated care from her gp, geriatric services, home care services and the local authority. The biggest gain would probably have been the maintenance of her quality of life in her own home setting. Mrs H. would then have been spared her rapid decline and could have enjoyed a better life in her twilight years and been able to die with more dignity. Mrs H. is one of many frail older persons in the Netherlands. Since this group is so large, helping them presents a challenge for the care system and the health care apparatus. The importance of gaining a better understanding of this group is also being recognised internationally. Research has shown that there are not only gains to be made in terms of improving the quality of life of individual older persons, but also that the growing group of frail older persons will place a heavy burden on publicly funded care provisions (in the Netherlands, care funded through the Exceptional Medical Expenses Act (aw bz) and the Social Support Act (Wmo)). The willingness to develop local and national policy for frail older persons is there, but as yet not enough is known about the number and characteristics of these older persons. Which persons are frail and which are not? What is and is not included in our definition of frailty? What is frailty? A clear policy and good health care for frail older persons begins with a clear definition. What is ‘frailty’? The standard Dutch dictionary describes frailty (kwestbaarheid) as ‘susceptible to injury or other adverse events’. In the case of Mrs H., these adverse events consisted in becoming seriously ill and admission to an institution. She was ‘susceptible’ to this because of an accumulation of minor ailments and deficits, which slowly but surely rendered her ‘frail’. Frailty appears to be a precursor to being ‘seriously ill’, although being ill can also render someone frail – think of the greater risk of social isolation following a stroke, for example. After the death of her husband, Mrs H was still healthy and complained only that she was becoming rather forgetful and was not sleeping well. As time passed, the complaints increased. The medical diagnosis later showed that she was suffering from multiple illnesses. Her physical disabilities and psychological symptoms increased. She was frail for a long time, until she became seriously ill and was no longer able to look after herself. In research, frailty is often mentioned in the same breath as terms at such as ‘disability’, ‘independence’ and ‘multimorbidity’. The relationship between these concepts, let alone the causal links between them, is anything but clear and can differ from case to case. Older persons with several illnesses (multimorbidity) and severe disabilities are more often frail, but not all frail older persons have multimorbidity or severe disabilities. There is a group of frail older persons who have no serious illnesses or disabilities yet who are still susceptible to a rapid decline in their health (cf. Fried et al. 2001; 20

introduc tion

Slaets 2004; Deeg & Puts 2008; Kempen 2009; Gobbens 2007). Frailty is also not synonymous with old age. Some people become frail at the age of 60 and others in their 80s. The degree of frailty does not rise in parallel with age, though there is a clear statistical correlation (cf. Rockwood et al. 2004; Deeg & Puts 2008). In individual cases, such as Mrs H., frailty appears to be determined largely by traumatic life events. Other concepts which are related to frailty in policy and treatment include ‘positive’ notions such as ‘good quality of life’ and ‘successful ageing’. These notions appear to be counterparts to frailty. However, frail older persons can still experience a reasonable to good quality of life, especially in the period before they experience negative life events and their consequences (Puts et al. 2007, 2009). Older persons may also be regarded by those around them as examples of people who are growing older successfully, for example because they play an active part in neighbourhood life and voluntary work (Von Faber 2002; Von Faber et al. 2001). Frail older persons are difficult to recognise if appearances deceive. How many frail older persons are there? There are currently around two and a half million persons aged 65 years and over in the Netherlands, roughly a sixth of the total population. This is expected to increase to a quarter of the population by 2030 and will probably still be at this level in 2050. Will the share of frail older persons increase just as quickly, more quickly or more slowly than the share of the total population aged over 65? What influence will other developments in the older population have, such as rising life expectancy, and increasing multimorbidity and disabilities (cf. Zantinge et al. 2011)? Care for older people in the Netherlands has changed in the last decade as a result of the system reforms in the Exceptional Medical Expenses Act (aw bz), the Care Insurance Act and the Social Support Act (Wmo) (Woittiez et al. 2009; De Klerk et al. 2010). Older persons today more often make use of informal care (De Boer et al. 2009). The volume and quality of these care provisions will influence how frail the older population is. Development of frailty On average, older persons become more frail with age. How does this frailty develop? And where could the national and local authorities invest in order to identify frailty among older persons in good time and to avoid its negative consequences? Most intervention studies on frail older persons have been carried out in clinical practice. Based on these studies, researchers have made recommendations for care providers and local authorities. The Dutch National Older Persons Care Programme ((npo), initiated by the Ministry of Health, Welfare and Sport (v ws), also supports local interventions. Apart from intervention studies, studies have also been carried out to provide an insight into the dynamic of frailty; an example is the Longitudinal Aging Study Amsterdam (l a sa) carried out by v u University Amsterdam. Although this is a nationally representative study, the findings have not yet been used as input for national and municipal policies on frailty.

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Protection against frailty How can older persons protect themselves and be protected against frailty? What choices do older persons have? What can they do themselves? Are older persons frail because of their origins? It is known that persons from low socio-economic backgrounds are at greater risk of developing chronic illnesses and die younger on average than people from higher socioeconomic classes. Does this mean that a higher socioeconomic position protects older persons against frailty? If the frailty of Mrs H. and others like her is attributable primarily to multimorbidity, frailty could be avoided through the prevention of chronic diseases. If it is lack of social contacts and neighbourhood cohesion that is the decisive factor, local authorities could reduce frailty by strengthening neighbourhood cohesion and stimulating social contacts by older persons, for example through community development work. Some older persons opt to move to a home that is more suited to their condition (e.g. on the ground floor and with adaptations). Does this make them less susceptible to admission to a care or nursing home? This question is important for housing associations, which need to know which types of housing stock and which home adaptations they should be investing in so as to prevent frail older persons having to move to a care or nursing home. Questions Frail older persons are still not sufficiently on the radar of policymakers. Precisely who are these older persons? How big a group are they, and what is the composition of that group, now and in the coming decades? Policymakers also have insufficient knowledge of the determinants and dynamic of frailty and therefore lack the necessary tools to protect older people against frailty. To meet this information need, the Netherlands Institute for Social Research | scp was commissioned by the Ministry of Health, Welfare and Sport to carry out a study of frail older persons in the Netherlands. This exploratory study was based on four central questions: 1 What is a practical policy definition of frailty? 2 According to this definition, which older persons in the Netherlands are frail, and how many of them are there? 3 How does frailty progress in older persons and which are the key determinant in this process? 4 Which factors can protect older persons against frailty and what can policy focusing on socioeconomic position, the residential setting, local authority support and longterm care do to help frail older persons? Studies of frail older persons are generally restricted to an older age group, from 70, 75 or 85 years upwards. In order to gain an impression of the gradual increase in the number of frail older persons in rising age cohorts, 65 years has been taken as the lower age limit in this study. That is also an important moment in people’s lives, because it coincides with the official retirement age in the Netherlands.

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introduc tion

This report marks a first exploration of the frail older population in the Netherlands and offers pointers to help policymakers provide timely support to this group. The authors hope that this report will contribute to better policy for frail older persons, so that Mrs H. and others are able to continue living their lives as they wish for longer.

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PART I What is frailty?

Helena le Roy - Dijkhuizen (aged 92 years)

older people make themselves frail by acting as if they ‘ Some are; always moaning or focusing on the negative things. If you’re optimistic and are able to put things in perspective, you are deciding for yourself to be less frail. I’ve also experienced several events in my life that have toughened me up and stopped me feeling frail. I don’t want to be frail.

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v ie w s of older per s ons on fr a ilt y a nd qua lit y of life

2 Views of older persons on frailty and quality of life Aukje Verhoeven, Sjoerd Kooiker and Jos van Campen 2.1 What frail older persons themselves say How do frail older persons themselves view frailty? The emphasis in the research literature is on the medical definition of this concept. However, several studies have shown that this definition does not reflect the perspectives of older persons themselves, who in fact never use the word ‘frail’ to describe their situation (Becker 1994). Older persons who are classed as frail according to medical criteria do not always feel frail (Von Faber 2002; Puts 2007). This difference in interpretation between doctors and patients is also known as the ‘disability paradox’ (Albrecht & DeVlieger 1999). This chapter presents the views of older persons themselves. To gain a greater insight into their views on frailty and quality of life, we gave older persons a chance to talk about what they consider important in their lives and to what extent this comes under pressure due to ageing. We then asked them what ‘frailty’ means for them. Interviews were held with 21 individuals aged between 70 and 91 years (the average age was 82 years), of whom seven were men and 14 women.1 The interviews took place in April 2010. The respondents were day patients at the geriatric outpatients clinic at Sloter vaart Hospital in Amsterdam,2 to which they had been referred by their gps because of health problems. The respondents were thus persons who were regarded by doctors as frail. One man had difficulty maintaining a conversation and was therefore excluded from the analysis; consequently, data from 20 respondents were analysed.3 2.2 What is important in life? Our conversations with older persons began with the question: ‘What is important in your life?’. This open question was intended to invite the respondent to talk about themselves. We expected that, once they began, they would feel at ease and would talk about their ‘quality of life’ in their own words and without being asked about it explicitly. The responses reveal that most people consider health and family to be very important. We continued our interviews with questions such as ‘Do the things that you consider important change as you get older?’, and ‘Are you afraid of losing that [what you consider important]?’. We hoped these questions would enable us to discover how the respondents feel that getting older affects them and what threats they think ageing poses to their quality of life. Health For many people, health is the most important thing in their lives, and this also applied to a number of the people we spoke to. During the interviews, it quickly became clear that we were dealing with a select group of older persons: our respondents were after all attending a hospital clinic as day patients. Many of these older persons said that they 27


considered health to be important. They often felt that they were in danger of losing their health or had already partially lost it, and were hopeful that they would recover again (quickly). A few participants were suffering from great pain which cast an allencompassing shadow over their lives. Mrs M. is someone who thinks that health is the most important thing, and she links that importance to the inevitable loss of health: What is important? Your health; at least that’s what I think. Health is more important than anything else. […] And I think that, the older you get, the more important you think health is, because you start to lose it. […] As you get older, you get more and more things that make life harder. And they don’t go away any more. There are some things you can do something about yourself, but it’s still there. And you look at your age and think: one day it’ll all be over. I don’t dare think about that. She also says clearly that she ‘has to work at it’ and that ‘nothing is easy’. One of the men we spoke to also cited health as the most important thing and said that medicines helped him stay healthy: Yes, I try to keep going. That’s important. Medicines help you stay in balance. Mrs R. is someone who considers health important and talks about it from the perspective of having partially lost her health: Staying healthy is important to me. I suffer pain all the time and that pain makes me despair. Especially the pain in my groin; I don’t get pleasure from anything. […] In the evenings I sit on my own watching television; I have no one to talk to. When asked if things were different in the past, this is their answer: Yes, things were different; that’s why I’m so unhappy now. In the past I could do everything, but I can’t now. I still do some things, though; I still cook myself. Other participants said that getting better was the most important thing for them: being able to walk again and getting rid of the pain. They also reported that they were sick to death of going round the medical circuit. Partner, children and grandchildren Hardly surprisingly, the older persons we spoke to considered their closest family members to be very important in their lives. If they mentioned their children as being the most important, they also had good contact with them and had the feeling that they could easily call upon them when needed: I have really good help, and my children help a lot. I only have to say the word and they are there for me. And I don’t have any problems with my children and they come to see me regularly. Yes, of course they have their work; they don’t come and sit with their mum every day. But they do pop in regularly. Or they phone me to ask how I am.

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But not everyone is so fortunate. We also talked to someone who thought it was a pity that she saw her children so little. She felt lonely and abandoned. Some people came to the interviews with their partners. It was often clear to see that these couples needed and supported each other. They also said as much in the interviews, for example this woman: I couldn’t do without my husband. I send up a prayer every day. I just need him. But I’ve always leaned on him a great deal. There are some couples where each partner more or less leads their own life. That definitely doesn’t apply to us, because we’re always together. And I think it works the other way round, too, that he feels the same. So you sometimes think about how much you lean on him and need him. Losing a partner is a traumatic experience. Many older persons have experienced this, especially women: He was just a really good man. But someone always has to go first and it always seems to be the men. […] When you look at the others in the home, they’re practically all widows. Just on a very odd occasion you see men. I always say: the stronger sex survives longer. This woman still misses her husband every day and says: But I had a very good marriage, and that’s very important. That’s actually the most important thing you can have, a good marriage. You sometimes have differences, but that’s normal, isn’t it? I would sometimes tell him: ‘Hey, W., stop going on so much; it’ll all be alright.’ And it always was alright; otherwise you don’t stay together for 50 or 60 years. Losing several partners in succession can make people hesitant to look for someone else: I could look for yet another friend. But they’ll only die like all the others. Three of them have already died. I thought to myself, I’ve become scared. Because all I seem to do is go to cemeteries and hospitals. Change is often another word for loss Losing close family members is a common experience for older persons. One of the interviewees explained how life changes automatically as one gets older, and that in reality this change often comes down to loss: As the years pass, your mother dies. Your father dies. They just die, you know. People all around you. So-and-so becomes ill. Then so-and-so gets sick. And then I find it hard to see any joy in life. An accumulation of losses, for example health and close friends and relatives, can have far-reaching consequences. It makes it difficult to keep seeing the bright side: All my friends are either dying or dead. My sisters-in-law are dead. I had one sister-in-law that I got on with very well. I really enjoy travelling. But macular degeneration put an end to that.4. So then I had to say to her: ‘I’m sorry, girl, but I can’t keep it up any longer. If you stand by the metro station and don’t wave or shout, I’m lost. So I can’t go with you any more.' ok, no problem. She would go with somebody else for the next holiday. So she did, and she came 29


back ill, and within six months she was dead. And then I think to myself: there’s another one gone. And then I had somebody who regularly came to visit me for lunch. Now that doesn’t happen any more; they live in V., and that’s not an easy journey any more; they’ve got macular degeneration, too. It’s so stupid, you think: for heaven’s sake, am I going to be the only one left? But anyway, I still enjoy life, but I can’t deny that it’s harder. It’s harder to do the things you’d like to do. Several respondents said that they find it increasingly difficult to do the things they would like to do. As their health deteriorates, they often become less mobile. The exchange with Mrs S. is typical: Mrs S.: You’re getting older and there are things you can’t do any more. Things you’d like to do but that you just can’t do any more. Interviewer: What kind of things? The things you just mentioned, such as cycling or going to the market? Mrs S.: Yes. I thought, there’s my bike; will I ever be able to get on it again? Holding on to one passion? Right at the start of the series of interviews, we saw that our respondents sometimes talked about that ‘one thing that gave their life meaning’, and that their life would fall apart if they were to lose it. Three older persons had become frail because of their onesided interest. The best example of this ‘passion for one thing’ was the account by Mr H. and his houseboat. The question, ‘What is important in your life?’ drew an answer that was short but to the point: ‘My boat’. It turned out to be a genuine houseboat, a concrete ark which could only sail if two engines were installed. He lived there with his wife in a splendid location outside Amsterdam. And I really love it. You’ve got the North Sea Canal, and if you go into it you go through the tunnel and then you go further along the North Sea Canal, and that’s where I am. I’m right in the middle of nature. It’s fantastic. We have a lake opposite us which I believe is 18 metres deep. But there are things which pose a threat to that idyllic life. Mr H. said he was finding the maintenance increasingly difficult: You’re not as quick as you once were. And that comes hard. You can fight it, but things aren’t quite what they used to be. Of course, that’s partly because you obviously have to maintain the boat, and that’s becoming harder and harder. And outsourcing the maintenance is not really an option: And then there are the problems of who’s going to put it right … you can get somebody to come and mend it and paint it, but it costs an arm and a leg. So for the time being he does it himself. The second threat is an external one: the building of a tunnel nearby, which could affect the mooring sites: You don’t have any control over that, because in the first place it has to do with the position of the boat, and they’re building a tunnel. So that’s the issue. And that’s the biggest problem: getting rid of those banks that can still be used at present by all boat owners. 30


These threats could mean that he is no longer able to continue living on his boat, and Mr H. is well aware of this. In response to the question: ‘How would you feel if you couldn’t live there any longer?’, he answers resolutely: ‘Then I’ll give up. I really mean that.’ Fortunately, Mr H. is confident that things will not come to such a pass and that the local authority will accede to the needs of the houseboat-dwellers. Another older man with a passion to hold on to in his life is Mr G. During his working life he was an important scientist who received lots of mail from home and abroad. He derived his identity from his work. He never married. Now he is 82 years old and has become confused. In his mind, he lives in a world where his work still goes on. His answer to the question, ‘What is important in your life?’ therefore comes without hesitation: the post. All kinds of interesting things come in. People ask all kinds of things, for example. That’s an important thing for me. […] I am especially interested in nature conservation. That’s why I receive so many amazing letters from abroad. Last week I received two letters that were addressed to Professor G. Mr G. then recounts how he can still be found every day at his old institute, but that the institute will be relocating shortly. He sees that relocation as a real threat. Later, his accompanying relative explains that Mr G. is confused and lives in a fantasy world. The interviewees included another man with a passion, in reality more of a hobby and therefore perhaps rather less important than housing (the houseboat-dweller) and work (the scientist). Mr B. (81 years) built and repaired fishing rods. It made him famous in his local area: Building fishing rods started out as a hobby. It was never my job, but I did also make them for shops. In those days, if a fishing rod had been made by W.B., they knew it was good and had to have it. Those days are gone. Many sports anglers today can afford expensive rods. Mr B. saw the demand for his rods evaporate like snow in the sun. Sports anglers no longer wanted his rods even if they were free. I can’t get rid of my fishing rods any more. I once went to the pier and I had two sea-fishing rods with me that I no longer use. […] I thought there would be boys fishing there and that I could give them the rods. By chance, a couple of young chaps passed by with a boat, which they moored up on the shore […] I told them I had something nice for them and that they should go with me. They said they would be busy for a little while. I went and got my rods and gave him one. He asked me what he was supposed to do with it. I said he could keep it and that it wouldn’t cost him anything. I told him I’d caught a lot of fish with it. He said he already had so many fishing rods. I never heard anyone say that before. [...] I really had to laugh. I said: They don’t cost anything and you still don’t want them!’. Then I don’t know any more. They then started talking about very expensive brands.

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The collapse in demand for his self-built fishing rods thus proved to be a clear threat to Mr B.’s passion. Another threat was the arthritis that developed in his hands. Luckily, he was prescribed medication which meant he was no longer troubled by his complaints: I had arthritis in my hands for a while. I could still do whatever I wanted, but I couldn’t even attach an eye [to the fishing rod]. That was awful, but that’s over now. Now he only repairs fishing rods, but he is a good deal less active than in the past: Until six months ago I felt I was up to date. I could do anything, and then suddenly it started to go downhill a bit. […] I’m not so active any more. 2.3 Loss of independence As they grow older, people often lose (some of) their independence: they need help in performing their daily activities or are forced to live in an institution (Rockwood et al. 1999). To discover the extent to which older persons believe they will be able to remain independent in the near future, we asked them to assess the chance that they would lose their independence within a year, would need extra help or would no longer be able to live independently. It quickly became clear that the respondents were willing to fight for their independence. They set great store by not having to be dependent on others. Some believed that they could continue living independently for the time being; others admitted that there is always a chance of something happening, but most of them were not consciously preparing for potential problems. A third group indicated that they were anticipating possible setbacks. What independence means differs from person to person and from situation to situation. Some respondents want to continue doing everything themselves as long as possible and even regard receiving help in the household as too great a step towards dependency. Others live in care homes, where they are helped with day-to-day activities such as showering and putting on support stockings, but still feel they have a great deal of independence. Those who say that they could continue to live independently often say this in the know ledge that they can always fall back on someone or because they have access to help. For example, Mrs O., who lives in a care home, reported that she still lives very independently. We asked her whether she thought she would continue to do so in the coming year. I hope so. I do receive help with the housework. Someone comes in once a week to do the hoovering. But I don’t cook any more, so the house doesn’t really get dirty. I just have my meals delivered. It works fine. I wouldn’t really want to leave here, because you have people around you here that you know. And you can go down every day to the coffee room if you want. You can also eat there twice a week. Mr B., the man who spoke so passionately about his fishing rods, recognises the possibility that something could happen at any time, but also says that he can always fall back on somebody if the worst should happen. Mr B. has had problems with arthritis in his hands in the past, which meant he was no longer able to live independently. During that time he was looked after by his daughter. When asked how great he thinks the chance is of losing his independence in the coming year, his answer is as follows: 32


I don’t think about it. What would be the point? […] You never know what’s going to happen, but I do have a fallback position, my youngest daughter. She definitely won’t leave me in the lurch, and if she does she’ll be right to do so. It has to end sometime. I lived with her for two and a half years. Most older persons say they are unable to predict whether they will continue living independently. As Mrs de B. says, you never know what is around the corner: You can’t predict that, because it’s not something that’s part of your normal life. Usually something just happens. You fall or you have an accident or whatever, and then your whole life changes. According to Mrs de B., life can change from one moment to the next. Some respondents stated that they are living now and do not concern themselves with whether or not they might need additional care in the near future. Others said that they do think about their situation and that they are taking precautions in anticipation of potential problems. As an example, part of a conversation with Mrs S. is given below. Mrs S. is an independent woman who has now attained ‘the age of the very strong’, as she herself puts it. Despite her age of 86 years, she still does everything herself: I have a shower every day, even though it’s not necessary. And then – some might say it’s looking for work – I snuggle up in my dressing gown and, while some people might think they’ll dry themselves, and I dry off all the tiles. It keeps me busy. And I like being busy. Because reading is difficult for me. […] At nine o’clock I watch the news, because it’s a more detailed version with subtitles, and then I start dusting my furniture. I also vacuum every day; there’s no need to, but it keeps me active. And I’ve found a way of cleaning the windows, because I don’t stand on a step ladder. You see shopkeepers doing it, too; they stand outside with a bucket and they have a long pole and a peg. […] If you’re not strong, you have to be clever, I always say. When I’ve done that, it’s time for coffee and I always make old-fashioned filter coffee. It keeps me active. And once that’s done, I go down to the square if it’s not raining, and take a turn around it. I have a look to see what I need. Even though it’s not necessary, I still do it if the weather is good, because it means I’m moving about. By then it’s lunchtime, and then I do that again. And now and again, if I feel like chatting, I can just phone someone. Mrs S. no longer sees well, however, and she also had a fall a short time ago. When the conversation turned to continuing to living independently, she accordingly said that, despite her independence, she would grasp the opportunity as soon as a place becomes free in a care home. We asked her if she expected to move to a care home in the near future, or whether she thought she could continue living independently for a long time yet: Well, knowing what I know now and what I’ve been through, it would of course be nice if there was a place that I could go to. Because it’s not a nursing home, but a care home. […] And I need an operation soon on my eye and there’s nothing left for me here anyway. So I’m not taking any chances. If there’s a place, I’ll grab it with both hands. My common sense says: do it.

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2.4 What do older persons understand by the term ‘frailty’? Being hurt Some older persons do not have much truck with the term ‘frailty’ and are not really able to explain adequately what it means. Others assign the meaning of ‘being hurt’ to the term, or define frailty in a different way from the experts. When we told a woman that older persons are sometimes described as frail, and asked her what frailty meant for her, she answered: Yes, you do become frail, of course. You’re confronted with the reality. That’s naturally a bit hurtful. Another woman said the following: You are frail if you yourself feel that you have sometimes lost your way. Then you’re frail. It turns out that she means losing your way literally: For example, if you go somewhere where you’ve hardly been before or where you’ve never been, and think to yourself: which way do I go? If you can’t find your way, I think you are frail. Losing your partner Many people believe that someone is frail if they have few social contacts. The example often given in the interviews was of a neighbour whose partner has died. Respondents felt sorry for these people and stated frequently how happy they were that they still had their partner. For Mr M., his partner – his ‘little darling ‘– is the most important thing in his life. He became emotional when saying that he would not know what to do without her: If you lose your partner, you’re even more frail. If you still have your partner, you can still go everywhere. Together. Together you’re strong. If you’re alone, it’s like a kick up the backside. People who themselves have lost their partner also say that this has made them frail: When am I frail? When I’m sad. When I think of W., where is he? Why did you leave me? I think about him all the time. Seeing changes in society The present scientific literature says little about the influence of the setting on the perception of frailty by older persons. However, it emerged clearly from our interviews that older persons think they are more frail and vulnerable as a result of the changing society. It may be that the interviews present a distorted picture here, because most of the respondents live in Amsterdam, with all its urban problems. However, the accounts do show how important the influence of society is on the experiences of older persons. When this was touched on in the interviews, two important effects of today’s society on the perceptions of older persons emerged. First, some respondents said that they thought older persons were blamed for ‘population ageing’ and that they no longer felt excepted in present-day society. This view is shared by this woman:

34


When you’re ignored; you’re frail then. Ultimately we are no longer in the picture so much, you might say. Because what are we? Older people. One walks like this, the other walks like that. Or else we’re just a nuisance or whatever. For families, older people still have their purpose. But for life in general? I’m 80 years old. I mean, what use am I to anyone? One man vented his frustration that little account is taken of older people. Although he can still keep up with social developments with the help of his children, he believes that many older persons are unable to do this. Things around you change, of course. And of course you’re no longer part of the social process. People today assume that everyone has a computer. I mean, older people are just ignored. Finally, some older persons are frail because they are less able to resist aggression. Many older persons stated that they no longer feel safe in their homes in the evening and no longer dare to open the door if someone rings the bell. Mr and Mrs S. said that this anxiety is increasing as they get older: Mrs S. We live in a big apartment complex, and if the intercom buzzer rings in the evening, I no longer open the door so quickly. Instead, I first ask ‘who is it’ and if someone says ‘I’ve forgotten my key, can you just open the door’, then I think: no, I won’t. Mr S.: In the past you just opened the door, no problem. I mean, without even thinking about it, as it were. The way society has developed, when you read the papers, you just read about robberies and break-ins. Mrs S.: I don’t think it’s only older people who have this anxiety, but I just think you no longer open the door so quickly if someone rings at 10 o’clock at night. No, we don’t do that any more; you become more cautious. I think it gets worse as you get older. Mrs de B. is also afraid to open the door: When do I feel frail? If someone rings the doorbell late at night and I’m at home alone. That scares me. I’ve never been afraid, but now I am, sometimes. When I check all the doors and windows at night before going to bed, I don’t really feel very comfortable. […] Because you know that all they have to do is touch you and you’ll be flat on your back. I lose my balance really easily these days. Someone just has to lift a finger and I fall. We asked her whether she feels more frail as she gets older: Yes, of course, because you feel much less capable. I mean, if you were attacked in the street or someone stole your bag, you’d resist. But how much good would my resistance do now? I’ve always been a tough cookie, but those days are gone. They hardly need to touch me and I’ll lose my balance. Being dependent on others Many people are afraid of losing their independence and say that people are frail when they are dependent on others. For Mrs de J. it is clear; frailty is ‘something you have to fight against; you have to concentrate on what you can do’. This 82 year-old lady studied 35


medicine and spent years working as a doctor. She tells her story with a great deal of humour and determination. So far, she has always managed alone: Mrs de J.: So far I’ve managed on my own, and that’s why I’m here [in the hospital]. I’m afraid that I won’t be able to manage in the future. I fight against becoming really frail. I don’t know how to put it. I don’t feel frail; I’m just afraid that I will become frail. Interviewer: And what is frailty, in your view? Mrs de J.: Not being able to manage independently any more. Needing help. At the moment, I don’t even have any help in the household. Until three weeks before the interview, she ‘only’ had something wrong with her eyes, which meant that her vision was impaired, but she had learned to live with it. However, she then had a fall, and because of the continual dizziness she now walks with a stick. And then she thought gloomily: there goes my independence. 2.5 Burden and capacity out of balance It emerged clearly from the interviews that the respondents have experienced a great deal of loss. Their health is in decline and they have lost their independence and often their loved ones. What was striking, however, were the different ways in which the respondents deal with this loss. For example, Mrs S. who was cited earlier remains a very optimistic woman, despite her serious eye complaint, the loss of loved ones and the difficulties of coping with present-day society. She is aware that she will not be able to remain independent forever and is preparing for this latest loss by arranging for a place in a care home. In this way, she retains control over her own life and is able to cope with her situation extremely well without feeling frail. People affected by similar burdens thus appear to have differing capacities to cope with them. If that capacity is low, they are frail. This observation corresponds with what Wellink (2003) concluded on the basis of her study of people with physical disabilities. According to her, these people form ‘a frail group because of the risk of a disturbed balance between burden and capacity’. Scientific definitions of frailty (see chapter 3) often cite examples of burdens, such as loss of health and the skills needed for day-to-day functioning, or the loss of family and friends and of a positive attitude to life. If we adhere to the idea that frailty is about a disturbed balance between burden and capacity, then there has to be a way of measuring that capacity. In the Tilburg Frailty Indicator, an instrument developed to measure frailty, this capacity is investigated by asking respondents if they are able to deal with problems adequately (question 22). People’s capacity to deal with problems would need to be studied more extensively in instruments designed to measure frailty if we wish to obtain a clearer picture of frailty as a disturbed balance between burden and capacity.

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2.6 Summary Our question ‘What is important in your life?’ elicited a number of fairly predictable answers. It is after all perfectly logical that health, life partner, children and grandchildren and other close family members should be mentioned. We also asked about changes in the things that are important and about the fear of losing them. It emerged clearly from the interviews that the experience and fear of ‘loss’ are important factors in the lives of older persons. They are experiences which can (greatly) undermine their quality of life. The extent to which they do this depends on the individual’s personal capacity to cope with them. A low capacity can result in frailty. Many respondents reported that something could always happen that would mean they were no longer able to live independently or needed extra help. Not everyone is preparing for this loss of independence, however. A number of respondents reported that they ‘live in the present’ and do not concern themselves with what might happen in the future. Often, people wish to continue living independently for as long as possible and attempt to meet their needs with a minimum of outside help. They would rather not be dependent on support from care professionals or their own family. What does ‘frailty’ mean for older persons? Some of them have their own interpretation for this concept, for example talking about being insulted or losing their way. Others attach a meaning to frailty which comes closer to the medical definitions. Loss of a partner and of social contacts, today’s hardened society and being dependent on others are major causes of frailty in the eyes of older persons. Although they try to delay the onset of frailty for as long as possible, disabilities increase as the years pass and older persons are aware of this increasing frailty. When asked if she is becoming more frail as she gets older, Mrs M., for example, answered: ‘I personally think it definitely has to do with getting older. I can’t think of any other explanation.’ It emerged from the interviews that older persons do not themselves readily use the term ‘frailty’. As the study by Becker (1994) also showed, older persons never use the term ‘frail’ to describe their own physical situation. By contrast, they do relate frailty to their relationships with other people. If their own physical condition is mentioned at all (according to experts, physical condition has a great influence on an individual’s frailty), they talk about the social consequences of their physical complaints. For example, Mrs S. says that, if she should become blind, she would be frail because she would then be dependent on others. Society therefore has a great influence on a person’s frailty, a finding that is found almost nowhere in the present literature on frailty. A further notable finding is that, with the occasional exception, older persons cite only one cause of frailty, whereas according to medical scientists frailty is the result of an interplay of causal factors.

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Notes 1 The scores on the Tilburg Frailty Indicator (see chapter 3) lay between 2 and 11; the average score was 5.85. See chapter 4 for the average scores in the population at large. 2 We would like to thank the nursing staff at the geriatric department of Slotervaart Hospital for their help in approaching these patients. 3 The interviews were held in the geriatric department of Slotervaart Hospital in Amsterdam and were conducted using a checklist of topics. The interviews took around 20 minutes to complete and were recorded. Each interview covered the following topics: important things in life; independence in the near future; meaning of frailty and the degree to which the respondent themselves and people in their setting are frail. The questionnaire from the Tilburg Frailty Indicator (t fi) was also used (see chapter 3). The interviews were transcribed and processed using a classification system (Droogleever Fortuijn 2002). 4 A disease of the eyes which causes deterioration of vision.

38

Gertruida Berens-Westerduin (aged 88 years)

hat is frail? I think it’s hard to define. Perhaps when I suddenly ‘ Wcame into the care home three years ago and had to leave all my belongings behind. Things are a lot better now than they were then. Physically, though, I’m fairly exhausted. My vision is only 5% and my hearing is bad. But my mind is still clear and in my heart I’m still young.

’

s cientific definitions a nd me a sur ement s of fr a ilt y

3 Scientific definitions and measurements of frailty Robbert Gobbens, Katrien Luijkx, Ria Wijnen-Sponselee, Marcel van Assen and Jos Schols 3.1

Emergence of the concept ‘frailty’

The concept ‘frailty’ has been used with increasing frequency in recent years in both the scientific world and the care professions. In the literature prior to 1980 virtually no attention was devoted to frailty and older people. The Federal Council on Ageing (fc a) in the United States introduced the term ‘frail elderly’ at the end of the 1970s to describe a specific segment of the older population. In 1978, the fc a defined the frail elderly as ‘persons, usually but not always over the age of 75, who because of an accumulation of various continuing problems often require one or several supportive services in order to cope with daily life’ (Hogan et al. 2003: 4). In the 1980s, other researchers also defined the terms ‘frailty’ and ‘frail elderly’ (e.g. Woodhouse et al. 1988). Since 1991, the number of publications on frailty has increased considerably (Gobbens et al. 2007). The degree of frailty of an older person is found to be a better predictor than age of adverse events such as admission to hospital or a nursing home and premature death (Mitnitski et al. 2002; Morley et al. 2002; Schuurmans et al. 2004). This is important in determining what level and type of care or treatment is needed and in assessing the health risks and associated care need. Determining the degree of frailty makes it possible to identify who needs extra attention or care (Schuurmans et al. 2004). Frailty therefore deserves to be given a place in clinical thinking and practice (Slaets 2004). In our view, the concept should be given attention at all levels of the care system, whether they be hospitals, nursing homes or primary care settings. The study by Kaethler et al. (2003) shows that medical experts share this view: 69% of respondents in that study, which was conducted among representatives of different disciplines (such as nursing, medicine, psychology and social work), considered the concept of frailty to be useful in both clinical and community-based care. Notwithstanding, it remains unclear precisely what frailty entails. There is no single, uniform definition of the concept (Hogan et al. 2003; Markle-Reid & Browne 2003). In order to be able to identify frail older persons and subsequently to reduce their frailty or prevent it becoming worse, a definition of frailty is therefore needed. The purpose of this chapter is to describe the scientific definitions of frailty, and on the basis of these definitions to propose a practicable instrument for measuring frailty. 3.2 Defining the concept ‘frailty’ There are many different scientific definitions of frailty in circulation. In the scientific literature, the concept has to date largely been restricted to the physical domain. A frequently cited definition of frailty is that by Fried et al. (2001): ‘frailty is a biological syndrome of decreased reserve and resistance to stressors resulting from cumula41


tive declines across multiple physiologic systems, and leads to adverse outcomes.' The associated operational or measurable definition of frailty, referred to as a ‘phenotype of frailty’, incorporates the following criteria: unintentional weight loss; self-reported exhaustion; weak grip strength; slow walking speed; and low physical activity. According to Fried et al. (2001), a person is frail if they meet three or more of these criteria. The definition by Fried et al. fits into the school of thought which follows a narrow definition of frailty. Narrow definitions strongly emphasise loss of health in older persons; they devote virtually no attention to their psychological and social functioning. A definition in which frailty does not refer exclusively to physical decline in older persons was put forward by Strawbridge et al. (1998). They define frailty as ‘a syndrome involving a grouping of problems and loss of capabilities in multiple domains that make the individual vulnerable to environmental challenge’. In addition to the physical domain, they distinguish a cognitive and sensory domain (hearing, vision) and a nutritional domain (loss of appetite, unexplained weight loss). The narrow definitions of frailty came under criticism, and researchers increasingly began applying broader definitions (Strawbridge et al. 1998; Rockwood et al. 1999; Markle-Reid & Browne 2003; Schuurmans et al. 2004; Puts et al. 2005; Gobbens et al. 2007). The breadth of the definition of frailty, or the number of domains of human functioning incorporated in the definition, naturally has an influence on the demarcation of the frail older population. 3.3 Difference between frailty and related concepts It is not only important to define frailty in broad terms, but also to draw a clear distinction between frailty and related concepts such as ‘disability’, ‘multimorbidity’, ‘quality of life’ and ‘successful ageing’ (cf. Zantinge et al. 2010). Functional disability can be described as the difficulties someone experiences in performing activities (cf. De Kleijn-de Vrankrijker et al. 2010).1 Multimorbidity (also referred to as comorbidity) means having more than one disease (cf. Gezondheidsraad 2009). These concepts partially overlap, as several studies have shown. Of American older persons who were identified as frail, 26.6% reported only frailty; 46.2% were frail and had two or more chronic diseases; 5.7% were frail and had disabilities; and 21.5% reported both frailty and disabilities as well as two or more chronic diseases (Fried et al. 2004). A Dutch study of people aged over 65 years showed that multimorbidity was slightly more common in frail older persons (14.8%) than disabilities (11.9%) (Deeg & Puts 2007). Chapter 4 describes the overlap between the concepts of disability, frailty and multimorbidity for older persons living independently in the Netherlands and for those living in an institution. Fried et al. (2004) argue that disabilities can exacerbate a person’s frailty and that multimorbidity can contribute to the development of frailty. However, not all older persons with disabilities are frail, and not all frail older persons have disabilities. In a survey of geriatric specialists from seven university medical centres, 98% of respondents believed that frailty is a cause of disabilities (Walston & Fried 1999). The Geriatric Advisory Panel concluded that frailty is a precursor to disabilities (Abellan van Kan et al. 2008). 42


Alongside frailty, the concepts ‘quality of life’ and ‘successful ageing’ also increasingly figured in research and policy in the 1980s and 90s. Where the emphasis in ‘frailty’ lies on deficient functioning in individuals, ‘quality of life’ and ‘successful ageing’ emphasise the positive aspects. ‘Successful ageing’ is a theoretical construct, whereas ‘frailty’ and ‘quality of life’ are more often used as operational or measurable concepts. The term ‘quality of life’ has its origins in psychology and the health sciences, and is defined as ‘individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’ (w ho Group 1998). Quality of life is thus a subjective concept. The term ‘successful ageing’ has been important in gerontological research since the 1980s (Baltes & Baltes 1990). The process of ageing is seen as a changing balance between gains and losses. This balance becomes less positive as people get older (Baltes 1987; Baltes 1997). The idea is that people try to increase their well-being by meeting one or more of their basic needs better (Steverink et al. 1998; Steverink 2009). If we look at how frailty, quality of life and successful ageing are measured, we find both correspondences and differences. All three concepts have a physical and social domain. There is no psychological domain for successful ageing, although the skills that can be used to meet one or more basic needs better can be attributed to the psychological domain. Quality of life also has a fourth domain, namely the residential and living environment. All three concepts have been studied from the perspective of older persons (see also chapter 2). These studies show that, while older persons consider physical health important, they attach more importance to their mental and social well-being. Frail and non-frail older persons aged between 67 and 90 years describe frailty in the same terms: poor health, difficulty walking, feeling down, being anxious, having few social contacts and not being able to do the things they would like. Men place more emphasis on physical disabilities, women on psychological and social disabilities. Nonfrail older persons described frailty in a more abstract way; they compare frailty with their own capabilities and stress that older persons can avoid becoming frail by taking sufficient exercise, for example. Frail older persons cite themselves as examples of frailty and stress that it is inextricably linked to ageing and that there is nothing to be done about it (Puts et al. 2009). Quality of life for both frail and non-frail older persons (67-90 years) incorporates good health, feeling good, having social relationships, being active, helping other people and living in a nice home in a good neighbourhood. Both groups consider health, well-being and social contacts to be the most important. What people regard as the most important thing for quality of life changes as they become more frail: non-frail older persons consider health to be the most important, while frail older persons place more value on social contacts (Von Faber et al. 2001; Phelan et al. 2004; Puts et al. 2007). For Dutch people aged over 75 years, frailty is closely related to quality of life (Gobbens et al. 2010e). Although most frail older persons have accepted their deteriorated health and adapted their activities accordingly, they do experience a lower quality of life than non-frail older persons (Puts et al. 2007). There is also a relationship between the domains of quality of life and frailty: for example, if people are socially frail, their 43


quality of life in the social domain is lower. The same applies for the psychological and physical domains (Gobbens et al. 2010e). Research among Mexican-Americans aged 74 years and over also showed that frail older persons score lower on quality of life than their non-frail counterparts. The chance that frail older persons will experience a low quality of life is ten times greater than for non-frail older persons (Masel et al. 2009). 3.4 A conceptual model of frailty Several researchers have developed conceptual models of frailty.2 There are mathematical models (Rockwood et al. 2002), models based on dysfunctioning of several biological systems (Walston & Fried 1999; Morley et al. 2002), biomedical and psychosocial models (Rockwood et al. 1994), and life-course models (Bergman et al. 2004). Models of frailty take different forms: they are presented as an algorithm (Morley et al. 2002; Bergman et al. 2004), a balance (Rockwood et al. 1994), a circle (Walston & Fried 1999; Fried et al. 2001) or a ‘plot’ (Walston & Fried 1999). Most models of frailty were developed by medical scientists (Markle-Reid & Browne 2003). This applies, for example, for the models by Rockwood et al. (1994), Buchner & Wagner (1992) and Walston & Fried (1999). In the dualistic approach adopted by these models, human beings can be separated into body and mind. The object of medical science is the human organism, the ‘human machine’. There has been growing dissatisfaction among care professionals with this medical approach, because it ignores people’s psychological and social functioning. One influential model that is both multidimensional and multidisciplinary is that developed by Bergman et al. (2004): ‘a working framework in development’. This model was developed after a systematic literature review by The Canadian Initiative on Frailty and Aging. The model of the life course of older persons describes the path from frailty to adverse outcomes, and shows that these can be influenced by a variety of biological, psychological and social variables which can be described as the competencies, resources and deficits of an individual in their environment. This model employs the criteria adopted by Fried et al. (2001) to determine whether or not someone is frail. Bergman et al. (2004) add two further criteria, namely cognitive decline and symptoms of depression. Biological, psychological and social factors which impinge on each other during a person’s life course are seen as the determinants of frailty.

44


Figure 3.1 A conceptual model of frailty age

age

health promotion and prevention

age

prevent/delay frailty

diminish frailty

prevent/delay adverse outcomes

frailty

life course determinants - age - education - income - sex - etnicity - marital status - living environment - lifestyle - life events - biological (including genetic)

disease(s) decline in physiologic reserve

physical frailty decline in: - nutrition - mobility - physical activity - strength - endurance - balance - sensory functions

psychological frailty decline in: - cognition - mood - coping

social frailty decline in: - social relations - social support

adverse outcomes disability

health care utilization

death

Source: Gobbens et al. (2010c)

Gobbens et al. (2010c) developed the model by Bergman et al. 2004 into a conceptual model of frailty (see figure 3.1). This model differs from the original model in that three types of frailty are distinguished – physical, psychological and social frailty – which are interrelated (Gobbens et al. 2010c). The conceptual model also refers to the following determinants: sociodemographic factors (age, sex, marital status, ethnicity); socioeconomic factors (education, income); lifestyle, life events, residential setting and genetic factors. These determinants are drawn from scientific research on frail older persons. Several studies explore the relationship between sociodemographic and socioeconomic factors and frailty (Strawbridge et al. 1998; Fried et al. 2001; Nourhashémi et al. 2001). For example, Fried et al. (2001), Rolfson et al. (2006) and Deeg & Puts (2007) have demonstrated that the prevalence of frailty rises sharply with age. Women are also more frail than men (Fried et al. 2001; Woo et al. 2005; Gobbens et al. 2010d). 45


Several researchers report that an unhealthy lifestyle, unhealthy diet, smoking and alcohol use can result in frailty (Bortz 2002; Fries 2002; Morley et al. 2006; Gobbens et al. 2010d). The residential setting (Raphael et al. 1995) and traumatic life events (e.g. being widowed) (Morley et al. 2006) are also among the life course determinants in the model. The safety of the neighbourhood can for example influence people’s life course, and events occur in older age that people would prefer not to experience, such as the death or serious illness of a loved one. Researchers are also convinced of the relationship between biological factors, including genetic factors, and the onset of frailty (Fried et al. 2001; Bortz 2002). The concept ‘disease’ occupies a prominent place in the conceptual model of frailty. A variety of diseases such as heart failure, anaemia and diabetes mellitus can render someone frail (Buchner & Wagner 1992; Brown et al. 1995; Strawbridge et al. 1998; Fried et al. 2001; Bortz 2002; Morley et al. 2006). The literature review by Levers et al. (2006) also showed that having two or more diseases (multimorbidity) considerably increases the likelihood of frailty developing. Finally, a condition of progressive frailty can lead to adverse outcomes such as severe disabilities, increased use of health care and premature death. According to Covinski et al. (2006), functional disabilities are among the biggest risk factors for the occurrence of other adverse health outcomes, viz. nursing home admission, high healthcare costs and premature death. Puts et al. (2005) demonstrated that frailty increases the likelihood of admission to a care or nursing home. The relationship between the risks of admission and death and the development of frailty is explored in Part iii of this report. In the model by Gobbens et al. (2010c) (see figure 3.1), the intervention options are listed immediately under the life timeline. The model shows the moment at which care professionals can make preventative and/or curative interventions. Primary prevention of frailty is mainly a task for the public health care system, welfare organisations and primary health care services, chiefly offered by general practitioners. Primary prevention can also be a task for specialist advisors, district nurses and geriatric specialists, because they are in the best position to be aware of the factors which under normal conditions can rapidly lead to institutionalisation but which are open to influence (Schols 2008). Very few older persons are frail without having several diseases and/or disabilities, and it is therefore of prime importance to prevent loss of independence and well-being in older persons (tertiary prevention) (Deeg & Puts 2007; Gezondheidsraad 2009).3 3.5 Definitions of frailty A scientific definition of frailty can serve different purposes. When assessing the various definitions, we took into account the usability of the definition for policymakers and care professionals. In addition, a definition of frailty must make it possible to determine which older persons are frail. The literature contains two types of definition of frailty: conceptual and operational. The number of conceptual definitions is particularly large (Gobbens et al. 2010a and b). Most conceptual definitions focus on only one form of frailty, usually in the physical domain. This is the case, for example, for the definitions by Buchner and Wagner (1992), 46


Hamerman (1999) and Fried et al. (2001). The definitions by Strawbridge et al. (1998), Nourhashémi et al. (2001) and Schuurmans et al. (2004) refer not only to the physical domain, but also to social functioning.4 Based on a literature search and written and verbal consultation of Dutch, American and Canadian experts in the field of frailty, we propose the following conceptual definition of frailty: Frailty in older persons is a process of an accumulation of physical, psychological and/or social deficits in functioning which increase the chance of adverse health outcomes (functional disabilities, admission to an institution, death). 3.6 Measuring frailty After consulting Dutch, American and Canadian experts in the field of frailty (Gobbens et al. 2010c), we proposed using the following criteria to determine whether or not an older person is frail: physical activity, nutrition, mobility, balance, sensory functions, strength, endurance (in the physical domain), cognition, mood, coping (psychological domain), social support and social relationships (social domain). The experts felt that the following criteria were essential in an operational definition of frailty: strength, nutrition, endurance, mobility, physical activity, balance and cognition. The first five criteria also form part of the ‘phenotype of frailty’ described earlier in the operational definition by Fried et al. (2001). Based on the discussions with experts and the literature search, Gobbens et al. (2010c) also added criteria for sensory functions (hearing, visual acuity) to the physical domain of frailty. Psychological functions (mood and coping) and social functions (social relations and social support) were also added. As with the conceptual definitions of frailty, we see that physical functioning is the most important criterion in the operational definitions of frailty. In fact, in the definitions by Chin A Paw et al. (1999), Brown et al. (2000) and Fried et al. (2001), the physical functioning of older persons is actually the only criterion used for frailty. As with the conceptual definitions, we also find other criteria of frailty in the operational definitions of frailty, namely experiencing difficulties in performing daily activities and having two or more diseases (multimorbidity) (cf. Rockwood et al. 1999; Schuurmans et al. 2004). 3.7 The Tilburg Frailty Indicator (tfi) A range of multidimensional instruments is available to determine frailty in older persons, such as the Edmonton Frail Scale (Rolfson et al. 2006), the Frailty Index (Jones et al. 2004) and the Groningen Frailty Indicator (gfi) (Schuurmans et al. 2004). In the Netherlands, several measurement instruments are used within the National Older Persons Care Programme (npo) to determine the degree of frailty in older persons. There is as yet no consensus on which is the best measurement instrument. The gfi, isa r, Easycare and Trazag measurement instruments are all used in various npo projects, sometimes in combination. Based on the conceptual model of frailty, we developed a new measurement instrument, the Tilburg Frailty Indicator (t fi). The t fi can be used to determine whether someone 47


is frail and to what degree. The total frailty score is determined by adding up the individual scores on each question. The maximum score is 15, which reflects the highest level of frailty. Based on existing research (Gobbens et al. 2005e), we determined that older persons are frail if they achieve a score of 5 or more on the t fi. At this score, the t fi was sufficiently ‘specific’ according to psychometric criteria and more than sufficiently ‘sensitive’ to be able to predict adverse outcomes. The t fi can be used to describe the functioning of older persons. It can also be used to identify physical, psychological and social problems. The t fi takes the form of a user-friendly questionnaire, which can be completed by older persons themselves. The t fi consists of two parts. The first part contains questions on the determinants of frailty; the second part contains 15 questions spanning three domains of frailty. Part B of the t fi (see chart 3.1) is used to determine whether someone is frail and in what respect.5 A questionnaire like the t fi gives care providers a tool with which they can easily identify which older persons are frail, and do so at an early stage. They can then intervene in time in order to prevent unnecessary loss of quality of life.

48


Chart 3.1 The Tilburg Frailty Indicator Part B Components of frailty B1 Physical components 11. Are you able to be sufficiently physically active? 12. Have you lost a lot of weight recently without wishing to do so? (‘a lot’ is: 6 kg or more during the last six months, or 3 kg or more during the last month) Do you experience problems in your daily life due to: 13. ..........difficulty in walking? 14. ..........difficulty maintaining your balance? 15. ..........poor hearing? 16. ..........poor vision? 17. ..........lack of strength in your hands? 18. ..........physical tiredness?

0 yes 0 no 0 yes 0 no

0 yes 0 no 0 yes 0 no 0 yes 0 no 0 yes 0 no 0 yes 0 no 0 yes 0 no

B2 Psychological components 19. Do you have problems with your memory? 20. Have you felt down during the last month? 21. Have you felt nervous or anxious during the last month? 22. Are you able to cope with problems well?

0 yes 0 sometimes 0 no 0 yes 0 sometimes 0 no 0 yes 0 sometimes 0 no 0 yes 0 no

B3 Social components 23. Do you live alone? 24. Do you sometimes wish you had more people around you? 25. Do you receive enough support from other people?

0 yes 0 no 0 yes 0 sometimes 0 no 0 yes 0 no

Score for Part B: from 0 to 15 Question 11: yes = 0, no = 1 Question 12: no = 0, yes = 1 Questions 13 - 18: no = 0, yes = 1 Question 19: no/sometimes = 0, yes = 1 Question 20 and 21: no = 0, yes/sometimes = 1 Question 22: yes = 0, no = 1 Question 23: no = 0, yes = 1 Question 24: no = 0, yes/sometimes = 1 Question 25: yes = 0, no = 1

3.8 Summary Since the 1980s and 90s, frailty has become a widely used concept in both science and practice. However, the large number of conceptual and operational definitions means it is difficult to determine precisely which older persons are frail, whereas a uniform definition of this group is necessary to enable timely measures to be taken to reduce, delay or prevent the onset of frailty and related adverse outcomes in older persons. Based on a literature search and consultations with national and international experts in the field of frailty, we propose the following definition: 49


Frailty in older persons is a process of an accumulation of physical, psychological and/or social deficits in functioning which increase the chance of adverse health outcomes (functional disabilities, admission to an institution, death). According to this definition, frailty can be measured on the basis of the following criteria: strength, nutrition, endurance, mobility, physical activity, balance, sensory functions (= physical domain); cognition, mood and coping (= psychological domains); and social relations and social support (= social domain). The Tilburg Frailty Indicator (t fi) is an operationalisation of this definition.7 This questionnaire is completed by older persons themselves and consists of 15 questions on physical, psychological and social components of frailty. Notes 1 To describe functional disabilities, policymakers and researchers make wide use of the icf classification from the World Health Organisation (w ho). icf stands for International Classification of Functioning, Disability and Health. 2 A conceptual model is ‘a set of concepts and propositions that integrate the concepts into a meaningful configuration’ (Fawcett 1989: 2). 3 The predictive value of frailty for (premature) mortality has been empirically demonstrated (Campbell & Buchner 1997; Fried et al. 2001; Mitnitski et al. 2002). 4 It is also notable that some definitions do not make a clear distinction between frailty and disease or disabilities. For example, Rockwood et al. (1999) include disease in their definition, while according to Brown et al. (1995), people are frail if they experience difficulties in performing their daily activities. 5 The psychometric properties of the t fi were investigated in a cross-sectional study using two representative samples (n = 245; n = 234) of persons aged 75 years and over, living independently in the Dutch municipality of Roosendaal in the Province of Noord-Brabant (Gobbens et al. 2010e). This study showed the t fi to be a reliable and valid instrument for establishing frailty. The test-retest reliability of the t fi was good (over a period of one year), as was the internal consistency. The construct validity was also good: the 15 individual items (second part of the t fi) correlated as expected with validated scales such as the Timed Up&Go Test, the Four Test Balance Scale, the Center for Epidemiologic Studies Depression Scale and the Loneliness Scale. The predictive validity of the t fi was good for quality of life, measured using the w hoqol-br ef (see Gobbens 2010 for a detailed account). 6 Research has shown that this question distinguishes between frail and non-frail older persons better than the original question: ‘Do you feel physically healthy?’ (Gobbens et al. 2010e). 7 An example of a different, comparable operationalisation is the Groningen Frailty Indicator (gfi).

50

PART II Which older persons are frail?

Simon de Niet (aged 89 years)

A s you get older, you’re more likely to get ailments. A lady of 103 ‘ that I knew was for example careful to make sure she didn’t sit in a draft. I still feel healthy. I can still walk and still hear. I just have poor sight in one eye. But I still feel like a young man; I can still do everything I want.

’


4 Frail older persons in the Netherlands Maaike den Draak and Cretien van Campen The frail older population is a widely discussed topic, and there is a general consensus that they are an important risk group in an ageing society. The public debate is fuelled by the special attention received by frail older persons from interest groups such as older persons’ federations and doctors’ associations. But who are these frail older persons and how many of them are there in the Netherlands? We will seek to give an empirical answer to this question in this chapter, as a supplement to the information in chapters 2 and 3, which focused on the meaning of the concept. The aim of this chapter is to present a national picture of the size and composition of the frail older population in the Netherlands. The number of frail older persons was estimated using population surveys carried out by the Netherlands Institute for Social Research | scp. The group studied is larger than in much existing research: in addition to older persons living independently, older persons living in institutions were also included. Data of persons aged 65 years and over were used from two surveys: the Amenities and Services Utilisation Survey (avo) for older persons living independently and the Older Persons in Institutions survey (oii) for residents of care and nursing homes. These data were used to answer the following questions: How many older persons (aged 65 and older) in the Netherlands are frail? How many of them live independently and how many in an institution? What are the characteristics of these two groups, and is there any overlap between frail older persons and other target groups of government policy for the older population, such as older persons with multimorbidity and/or functional disabilities? 4.1 Size of the frail older population The size of the frail older population depends on the definition of frailty that is chosen (see chapter 3). The prevalence of frailty in older persons varies in the scientific literature. There are two reasons for this: first, whether a narrow or broad definition is used, with the latter obviously resulting in a higher prevalence; and secondly, the lower age limit used: a higher age limit of, say, 75 and older or 85 and older will generate a higher prevalence than a lower age limit of 65 years and over. Existing prevalence measurements of frailty carried out in the Netherlands are difficult to compare due to differences in the definitions (and operationalisations) used and the age limits selected. In an earlier study, scp estimated the number of frail older persons in the Netherlands at 150,000 in the population aged over 55 years; this estimate was based on a definition of frailty as the situation in which the burden (diseases) that the person has to bear is too heavy in relation to their capacity (social network, income) (De Klerk et al. 2004: 30). This approach combines self-care problems (physical frailty) with the income position and cohabitation situation of older persons.

53


Internationally, most estimates of the number of frail older persons have to date followed the narrow, physiological approach proposed by Fried et al. (2001). In recent years, however, a shift has been taking place towards broader definitions, reflecting the recognition that psychological and social frailty can also be harmful to health (see chapter 3). The narrow definition of frailty produces Dutch prevalence figures between 6% and 11% of the population aged over 65 years (Chin A Paw et al. 2003; Santos Eggiman et al. 2009). Based on a broader definition (which includes aspects of psychological frailty),2 Deeg and Puts (2008) found that 14.5% of men and 20.7% of women aged 55 years and over in the Netherlands were frail. Broad operationalisations of biopsychosocial frailty, such as the Groningen Frailty Indicator (gfi) (Schuurmans et al. 2004) and the Tilburg Frailty Indicator (t fi) (Gobbens et al. 2010e) generate the highest prevalence figures in local samples: 32% of persons aged 65 years and over living independently in the Groningen region (Schuurmans et al. 2004, gfi), 47% of people aged over 75 years living independently in Roosendaal (Gobbens 2010e, t fi), 46% (gfi) and 40% (t fi) of gp patients aged 70 years and over in the provinces of Limburg and Utrecht (Metzelthin et al. 2010). As stated, in this chapter we look at the total population of people aged over 65 years (including those living in institutions) using a broad, biopsychosocial definition of frailty (see chapter 3). Frailty in older persons is a process involving the accumulation of physical, psychological and/or social deficits in functioning which increase the risk of adverse health outcomes (functional disabilities, admission to an institution, death). Frailty was operationalised using a modified version of the Tilburg Frailty Indicator (t fi) introduced in chapter 3. Table 4.1 shows the degree of frailty (on a scale from 0 to 15) by age categories of older persons living independently and older persons living in institutions. The degree of frailty among persons living independently increases with age, but this does not apply for older persons living in institutions (table 4.1). This is because older persons in institutions already constitute a selection of older persons who experience problems, and once they move into an institution, age evidently no longer makes any difference for their frailty.

54


Table 4.1 tfi-score of persons aged 65 years and over, by residential form and age category, 2007 (vertical percentages)a older persons living independently tfi 0 tfi 1-4 tfi 5-9 tfi 10-15 (n)

65-69 years

70-74 years

75-79 years

80-84 years

≥ 85 years

total sign.***

33 56 11 0

23 57 16 3

17 55 24 4

4 49 39 8

0 43 47 10

21 54 21 3

628

500

408

243

115

1894

older persons in institutions tfi 0 tfi 1-4 tfi 5-9 tfi 10-15 (n)

n.s. 0 15 66 19

2 10 68 20

0 15 68 17

0 19 61 20

0 20 59 21

0 18 61 20

35

72

156

328

935

1526

a Significance: * p < 0.05; ** p < 0.01; *** p < 0.001; n.s. = not significant. Source: scp (avo’07)

Roughly a quarter of over-65s living independently in the Netherlands are frail (t able 4.2). Almost three-quarters of over-65s living in care homes are frail, and almost every resident in somatic and psychiatric (departments of) nursing homes is frail (not shown in table). In total, 27% of over-65s are frail, or an estimated 600,000 to 700,000 persons in 2007/2008. Table 4.2 Prevalence of frailty in the population aged 65 years and over by residential form, 2007/2008 (in percentages and absolute numbers x 1,000)  

%

number

living independently living in institution total (weighted)

24 81 27

520 92 613

95% reliability interval 473 -567 90-95 564-661

Source: scp (avo’07, oii’08)

55


4.2 Frail older persons living independently 3 The percentage of frail members of the older population living independently increases as the age limit is raised: among the under-75s it is 38%, rising to 50% among the over80s (not shown in table). These percentages are of the same order as those found in local studies and correspond with applications of the t fi in another nationally representative sample of the over-65s, the l a sa study (Longitudinal Aging Study Amsterdam). The studies discussed earlier also found that frailty increases with age (Fried et al. 2001; R olfson et al. 2006; Deeg & Puts 2007). Table 4.1 confirms this finding: frail older persons are found primarily in the oldest age groups. Above the age of 65 years, women are more often frail than men. This observation is supported by the findings of other studies (Fried et al. 2001; Woo et al. 2005; Gobbens et al. 2010d). An older study in the l a sa series reports a prevalence of around 14% among men and 21% among women aged 65 years and over (Deeg & Puts 2007).4 This difference is of course caused partly by the fact that the women in this group are older on average than the men. However, the relationship between frailty and age is also different for men and women, as figure 4.1 shows. The rapid increase in the number of frail men begins around five years later than among women.5 Figure 4.1 Share of frail persons, by sex and age group, population living independently aged 65 years and over, 2007 (in percentages) 70

men women

60 50 40 30 20 10 0 65-69 years

70-74 years

75-79 years

80-84 years

≥ 85 years

Source: scp (avo’07)

The international studies on frailty do not contain much information about the social backgrounds of frail older persons. For example, do frail older persons more often have a lower socioeconomic status? Do they more often live in large cities? Do they more often live alone? 56


It might be expected that people living alone are more frail than older persons who live with a partner or others, but this is found not to be entirely true. Four out of ten widowed or divorced older persons living alone are frail, but among other older persons living alone, for example those who have never married, the number is lower, at three in ten. Between one and two out of ten cohabiting older persons6 are frail. Frail older persons more often have a low socioeconomic status. Table 4.3 shows that the percentage of frail persons is more than three times as high among older persons with a net monthly income of less than eur 1,400 as among those with a monthly income of eur 1,800 and above. Table 4.3 Income and education level by frailty, population living independently aged 65 years and over, 2007 (horizontal percentages)a (n) net monthly disposable household income

frail

not frail

sign.***

≤ 1000 euros 1001-1200 euros 1201-1400 euros 1401-1800 euros 1800-2200 euros > 2200 euros total

41 48 37 24 15 14 24

59 52 63 76 85 86 76

111 207 254 398 344 579 1894

education level max. primary junior secondary vocational education, junior g eneral secondary education secondary school for girls, modern grammar school, senior secondary vocational education, university of applied sciences, university total

sign.*** 37

63

481

21

79

635

15 24

85 77

571 1687


Education level also plays a role. A third of older persons who have completed no more than primary education are frail, compared with one in seven older persons with a higher education background. It is striking that the socioeconomic differences vary by age. Figure 4.2 shows that, in the 65-74 age group, frailty rates rise more among those with a low education level than among older persons with a different education level, and that above the age of 75 years the differences reduce again. This appears to suggest that people with a low socio economic status become frail earlier. This could explain why these persons die younger 57


on average than persons with a higher socioeconomic status. A high socioeconomic status thus appears to delay the onset of frailty. This hypothesis is analysed more precisely and discussed on the basis of longitudinal data in chapter 10. Figure 4.2 Share of frail persons by education level and age group, population living independently aged 65 years and over, 2007 (in percentages) 60 50 40 30 20 10 0 65-69 years

Source: scp low (avo’07)

70-74 years intermediate

75-79 years

≥ 80 years

high

A relatively high proportion of older persons with a low socioeconomic status live in cities. It might therefore be expected that the share of frail older persons in cities is higher than in less urbanised areas and in the countryside. This is found not to be the case; the analyses show no significant relationship between degree of urbanisation and frailty (not shown in table). To summarise, frail older persons living independently in the Netherlands are predominantly of great age, women, live alone (especially widows/widowers and divorcees) and have low socioeconomic status.7 These groups overlap to some extent; for example, women are older on average and are therefore more often frail. To take account of this, the study looked at which personal characteristics retain their influence on the degree of frailty after correction for overlap. As the literature indicates that multimorbidity and disabilities in older persons are important determinants of frailty, these characteristics were also included in the analytical model.8 The first model predicts the degree of frailty on the basis of demographic and socioeconomic characteristics of older persons living independently (see table 4.4). This model explains 28% of the differences in frailty. All characteristics except income are significant. Living with a partner or others and having a higher education level are of particular importance, because these characteristics are found to diminish frailty. Not living alone and having a high education level thus protect older persons against frailty. 58


Table 4.4 Determinants of degree of frailty (tfi score), over-65s living independently (in betas and percentages; n = 1,790)a

socioeconomic characteristics (%) man (ref.) woman age household composition several persons in household alone, widowed alone, divorced alone, other (ref.) net disposable household income household income max. primary (ref.) junior secondary vocational education, junior general secondary education secondary school for girls, modern grammar school, senior secondary vocational education,university of applied sciences, university

model 1

model 2

model 3

28

28

28

0.06* 0.27***

0.04 0.23***

–0.28*** 0.01 0.07

–0.26*** 0.02 0.06

–0.01

–0.00

0.00

–0.08**

–0.07*

–0.02

–0.16***

–0.14***

–0.07**

11

11

diseases (%) (chronic) diseases b none (ref.) one two or more

0.13*** 0.37***

disabilities (%) motor disabilities none (ref.) mild moderate severe R2 total (%)

–0.00 0.02 –0.25*** 0.02 0.03

0.03 0.08*** 25

0.15*** 0.42*** 0.60*** 28

39

64

a Significance: * p < 0.05; ** p < 0.01; *** p < 0.001; n.s. = not significant. b List of diseases: asthma, chronic bronchitis, lung emphysema or copd; cancer or malignant disease; severe heart disease; (consequences of) stroke, brain haemorrhage or cerebral infarction; severe disease of kidneys, gallbladder, liver or thyroid gland; osteoarthritis of hips or knees; chronic joint inflammation; diabetes; severe persistent back, neck or shoulder complaints; epilepsy; severe skin disease; diseases of the nervous system; long-term psychological problems; cognitive problems. Source: scp (avo’07)

59


The second model is the same as the first, but also includes the variable ‘number of diseases’. Multimorbidity means having more than one disease simultaneously. Adding this characteristic enables the model to explain a larger part of the differences in frailty, namely 39%. Persons with multimorbidity (two or more diseases) are at greater risk of frailty. It is striking that sex no longer has a significant influence on frailty. This means that the reason women are more often frail is that they more often have several chronic diseases. The significant contribution by the number of diseases to the degree of frailty suggests that preventing multimorbidity (as recommended by the Health Council of the Netherlands (2008)) reduces the degree of frailty in older persons. The third model is the same as the second, but with the added variable ‘physical disabilities’. The explained variance is now 64%.10 As well as sex, age is now no longer significant. This means that the differences in frailty by age are explained by the degree to which people have physical disabilities. Policymakers ought therefore to be seeking to prevent and compensate for physical disabilities in people of all ages, not just older persons. Frailty is not exclusively a ‘disease of old age’. 4.3 Frail older persons living in institutions The profile of the frail older population in institutions is different from that of their counterparts who live independently. Almost all older persons in nursing homes achieve high frailty scores; since practically all nursing home residents are frail, this group is left out of consideration in the remainder of this chapter. Roughly three-quarters of care home residents are frail according to the t fi. Frail care home residents are more often women and live alone. Thus far, the profile corresponds to that of frail older persons who live independently. As commented earlier, age makes no difference for older persons living in institutions, including care homes; the share of frail older persons is the same among the over-65s as among the over-75s and over-85s: in each case, roughly three-quarters of residents are frail. Frail care home residents are also no different as regards education level; frailty is no more common among care home residents with a low education level than among their higher-educated counterparts. As for older persons who live independently, the study looked at which personal characteristics of care home residents retain their influence on the degree of frailty after controlling for overlap between characteristics (see § 4.2). The first model explains 9% of the differences in frailty. Higher age and being female contribute significantly to frailty. Being married (and living in the same home) offers protection against frailty. Education level and income have no influence on frailty. The second model includes multimorbidity and explains 16% of the differences. As with those living independently, the effect of sex is taken over by multimorbidity. The third model, including disabilities, explains 31% of the variance. In addition to the severity of the disability, high age and the multimorbidity make a significant contribution to frailty. Living with a marital partner and having a high income protect against frailty.11

60


Table 4.5 Determinants of degree of frailty (tfi score), care home residents aged 65 years and over, (in betas and R2 ; n = 938)a

socioeconomic characteristics (%) man (ref.) woman age household composition married and living in the same apartment or home alone, widowed alone, other (ref.) net disposable household income ≤ 1000 euro (ref.) 1001-1200 euro 1201-1400 euro 1401-1800 euro > 1800 euro education level max. primary (ref.) junior secondary vocational education, junior general secondary education secondary school for girls, modern grammar school, senior secondary vocational education, university of applied sciences, university

model 1

model 2

model 3

9

9

9

0.10* 0.10*

0.07 0.12**

0.06 0.10**

–0.18*** –0.03

–0.20*** –0.04

–0.15*** –0.04

–0.05 –0.03 –0.06 –0.07

–0.05 –0.04 –0.06 –0.08*

–0.04 –0.04 –0.04 –0.08**

–0.02

–0.03

–0.03

–0.06

–0.05

–0.02

7%

7%

diseases chronic diseasesb none (ref.) one two or more

0.18** 0.39***

disabilities (%) motor disabilities none/mild (ref.) moderate severe R2 total (%)

0.05 0.19*** 15

0.17*** 0.55*** 9

16

31

a Significance: * p < 0.05; ** p < 0.01; *** p < 0.001; n.s. = not significant. b List of diseases: asthma, chronic bronchitis, lung emphysema or copd; cancer or malignant disease; severe heart disease; (consequences of) stroke, brain haemorrhage or cerebral infarction; severe disease of kidneys, gallbladder, liver or thyroid gland; osteoarthritis of hips or knees; chronic joint inflammation; diabetes; severe persistent back, neck or shoulder complaints; epilepsy; severe skin disease; diseases of the nervous system; long-term psychological problems; cognitive problems. Source: scp (oii’08) 61


4.4 Frailty, multimorbidity and disability As we have seen in the preceding sections, multimorbidity and physical disabilities have a great influence on the degree of frailty in both older persons living independently and those living in care homes. The Netherlands has for some time had in place a policy for people with chronic diseases and/or a disability. The Health Council of the Netherlands drew attention in two recent reports to the relationship between frailty in older persons and multimorbidity and long-term disabilities in this group (Gezondheidsraad 2008, 2009; see also Kempen 2009). To what extent does the group of frail older persons coincide with the existing target groups of government policy? Do these groups largely overlap so that there is in reality one group of older persons, or are we dealing with different groups? In theory, the concepts of frailty, multimorbidity and disability can be distinguished from each other (see chapter 3; cf. Fried 2001; Daniels et al. 2008; Gobbens 2010a), but in practice they overlap (Fried 2001; Deeg & Puts 2007). In a group of American older persons with physical frailty, 27% were found to be only frail; 46% were frail and also had two or more chronic diseases; 6% were frail and had a disability; and 22% were frail and had both disabilities and two or more chronic diseases (Fried et al. 2004). In a Dutch study of the over-65s, multimorbidity was found slightly more often in frail older persons (an overlap of 14.8% with frailty) than disabilities (overlap 11.9%) (Deeg & Puts 2007). In this study we determined the overlap between frail older persons, older persons with multimorbidity and older persons with moderate to severe physical disabilities in the Dutch population aged over 65 living independently and the population of care and nursing home residents aged 65 years and over.12 The Venn diagrams in figure 4.3 show that the overlap among older persons living in institutions is much greater than among those living independently. Older persons in institutions logically face multiple problems. Frail older persons, both those living independently and those in institutions, were also found to display greater overlap with the population of older persons with disabilities than with the population of older persons with multimorbidity (see figure 4.3).

62


Figure 4.3 Overlap between over-65s with multimorbidity, (moderate to severe) disabilities and a high degree of frailty, among those living independently (A) in 2007 and residents of institutions (B) in 2008 (in percentages; n = 1810 (A) and n = 1526 (B))a (A) Older persons living independently

52

frail 2 2 13

multimorbidity 12

7

8 disabilities 4

(B) Older persons in institutions

2 frail 0

22 0

disabilities 7

60 9

multimorbidity 1

a Frail older persons are older persons with a tfi score of 5 or higher (see § 4.1); which older persons have disabilities was determined using the scp measure for physical disabilities (see De Klerk et al. 2006), while older persons with multimorbidity were defined as persons with two or more chronic diseases. Source: scp (avo’07, oii’08)

63


4.5 Identifying frail older persons Identifying frail older persons using the t fi also brings a large proportion of older persons with multimorbidity and/or functional disabilities into the picture. This offers practical benefits, because assessment using the t fi is much simpler than having to diagnose several diseases in order to establish the presence of multimorbidity. In addition, the t fi generally identifies two groups at once: older persons with multimorbidity and older persons with long-term functional disabilities. Moreover, a new group of frail older persons is brought into the picture, namely those without multimorbidity and/or functional disabilities.13 Who are the older persons living independently who are frail but do not have multimorbidity and/or functional disabilities? This group of frail older persons are younger on average than the other groups (with multimorbidity and/or functional disabilities); they also less often feel energetic and are more often depressed or nervous; they more often live alone and they would more often like more social contact. They less often have problems with standing and walking. Broadly speaking, their frailty lies primarily in the psychological and social domains. Establishing the existence of a new target group is one thing; finding them is another. At present, the Dutch Ministry of Health, Welfare and Sport is investing a great deal through the National Older Persons Care Programme (npo) in identifying and helping frail older persons through gp practices, geriatric networks and local authorities (www.nationaalprogrammaouderenzorg.nl). The use of care by frail older persons provides some insight into the scope for identifying them. We may assume that frail older persons living in institutions are already known, and these persons are therefore left out of consideration here. One way of identifying frail older persons living independently is to look at which people have contact with care professionals. Eight out of ten frail older persons living independently had consulted their gp during the three months prior to the study,14 and six out of ten had been in contact with a medical specialist (table 4.6). A quarter of the group had been admitted to a hospital or clinic during the past year. Half of frail older persons living independently have received care in the last year funded through the Social Support Act (Wmo) (local authority funding) or the centrally funded Exceptional Medical Expenses Act (aw bz) (Needs Assessment Centre (ci z)) (see table 13.2 in chapter 13). Most people in this group receive home care services from the local authority. These figures show that gps see most frail older persons, and that roughly half this group are known to the local authority and the Needs Assessment Centre. Compared with medical services (‘cure’), frail older persons appear to have less contact with long-term care services for the older population (‘care’). Half of them receive no care funded either through the Social Support Act (Wmo) or the Exceptional Medical Expenses Act (aw bz). This could be the consequence of stricter referral rules; frail older persons have a higher risk of becoming care-dependent, but may not be in need of care at the precise moment of their assessment, and would therefore probably be refused if they were to apply for care at that time. Chapters 12 and 13 look in more detail at the use of care services for frail older persons funded through the Wmo and aw bz.

64


Table 4.6 Frailty by use of curative medical services, population aged 65 years and over living independently, 2007 (vertical percentages)a frail consulted gp b contact with medical specialistb admitted to hospital or clinicc used physiotherapyc used mental health care servicesc (n)

not frail

total

81 64 25 37 6

72 44 14 26 2

75 49 17 29 3

463

1430

1894

sign.*** sign.*** sign.*** sign.*** sign.***

a Significance: * p < 0.05; ** p < 0.01; *** p < 0.001; n.s. = not significant. b In the three months preceding the study. c In the 12 months preceding the study. Source: scp (avo’07)

4.6 Summary Taking the broad definition of frailty as a basis, it is estimated that there are between 600,000 and 700,000 frail older persons (aged 65 and over) in the Netherlands. Most of them, between 500,000 and 600,000 persons, live independently; the rest live in care or nursing homes. Roughly a quarter of older persons who live independently are frail. The frailty rate is much higher among those living in institutions: around three-quarters of care home residents are frail, as are virtually all residents of nursing homes. Independently living older persons who are frail are often older, female, live alone and more often come from low socioeconomic backgrounds. However, the decisive factors for their frailty are having more than one disease (multimorbidity) and having severe or moderate motor disabilities. The profile of frail older persons in care homes resembles that of their counterparts who live independently. When identifying frail older persons in society, many older persons with multimorbidity and/or long-term physical disabilities are also identified. These groups partially overlap, which means there is also a group of frail older persons without multimorbidity or long-term disabilities. This group of frail older persons live independently, are relatively young and their frailty lies primarily in the psychological and social domains. Eight out of ten frail older persons who live independently have recently had contact with their gp; a quarter have recently been admitted to hospital; and half are receiving care funded through the Social Support Act (Wmo) and/or the Exceptional Medical Expenses Act (aw bz). In addition to identifying frail older persons and care provision by gps, it is also recommended that the possibility of identifying frail older persons via the Wmo be explored. This would bring a new group of psychologically and socially frail persons into the picture.

65


Notes 1 This attention for frail older persons is not a purely Dutch phenomenon; the frail older population is a group that is high on the policy agendas worldwide (see e.g. ifa 2008). 2 Deeg and Puts (2008) measure frailty using items relating to lower body weight, reduced lung function, physical inactivity, cognitive disabilities, poor vision, hardness of hearing, incontinence, symptoms of depression and/or little perceived control over one’s own life. 3 The question of which older persons are frail is answered separately for older persons who live independently (§ 4.2) and older persons in institutions (§ 4.3). 4 The study by Deeg and Puts (2007) uses a different definition of frailty from that used in this report. 5 In Part iii of this report the relationship between age and sex is analysed in detail using longitudinal data on older persons. 6 Cohabiting: the respondent is part of a household consisting of two or more persons. The other person in the household need not necessarily be their partner. 7 We make no statements about ethnicity, because members of non-Western ethnic minorities aged 65 years and over are insufficiently represented in the databases analysed in this report. Further research on this group is desirable. 8 In order to be able to estimate the influence of personal characteristics more precisely, ‘degree of frailty’ (t fi score of between 0 and 15) was included in the regression analysis as a dependent variable rather than ‘frail or not frail’ (t fi ≥ 5 versus t fi < 5). 9 As living alone forms part of the t fi measure of frailty, a test was also carried out in the model using a modified t fi assessment without the item ‘living alone’. Household composition (including living alone) was then no longer significant. 10 The high explanatory power of the third model is due partly to the overlap between the measures for disability and frailty. The model was therefore tested in stages to gain a clear impression of the influence of the variable ‘disability’. 11 As the items ‘living alone’, ‘walking for ten minutes without stopping’ and ‘standing for ten minutes’ occur both in the t fi measure and the determinants, the analyses were repeated without these items (see also note 9). After removal of the latter two items relating to disability, the influence of disability is still significant but the coefficients change. In addition, analyses were performed in which the determinants were added in a different order each time, to determine whether the sequence has an effect on the explained variance. There was some effect, but regardless of the order, disability had the biggest influence on frailty, followed by background characteristics and multimorbidity. 12 In order to determine this overlap, we used three measurement instruments: the t fi for frailty (criterion: t fi ≥ 5), the scp measure of physical disabilities (criterion: moderate or severe) and a construct of multimorbidity (criterion: two or more chronic diseases). 13 We also investigated which are the common diseases and disabilities in frail older persons who live independently. 59% of this group have two or more chronic diseases (multimorbidity); 22% have one chronic disease and 18% have no chronic diseases. The most common chronic diseases among frail older persons are osteoarthritis in hip or knees (46%); severe, persistent back, neck or shoulder complaints (34%); and asthma, chronic bronchitis, lung emphysema or copd (27%). Eight out of ten frail older persons experience moderate to severe difficulties in performing their personal care activities and doing housework. Half the group have moderate to severe vision and/or hearing impairments. 14 Of the over-65s who visit their gp, 27% are frail. 66

Jacobus den Heijer (aged 90 years)

When I was 48, I spent three months in hospital after I broke ‘ both legs in an accident on the fishing boat. I was frail then. When my wife died, too, it hit me hard. After 20 years, I’m now on my third pacemaker. Despite all that, I’ve still reached the age of 90. You just have to keep on fighting your way through it.

’

es tim ate of the number of fr a il older per s ons up to the y e a r 2030

5 Estimate of the number of frail older persons up to the year 2030 Cretien van Campen, Michiel Ras and Maaike den Draak

The spectre of population ageing will cost society a lot of money: that is the impression which dominates the political debate about the older population. In addition to the costs of the state pension, the belief is that costs of care are set to rise dramatically. Care funded under the Exceptional Medical Expenses Act (aw bz), which consists largely of long-term care services for older persons, is in danger of becoming unaffordable. The share of older persons in the population who require care will increase and the working population who have to pay for that care will shrink, so the argument goes (see e.g. Van den Brink & Heemskerk 2006; Van Ewijk et al. 2006; Knook 2008). A crucial element in this thinking is an assumed rapid growth in the number of older persons who are frail and in need of care, and who are the cause of the increase in cost. But is this assumption correct? This chapter examines the question of how the number of frail older persons will increase in the coming decades. Will their number keep pace with population ageing, or will it increase more quickly – or perhaps more slowly? A simple arithmetical calculation is usually performed. Between now and 2030, the number of older persons in Dutch society will rise from 2.5 million to 4.1 million, an increase of 61%. The increase in the share of frail older persons will be at least as strong, so that the number of frail older persons could almost double in the next 20 years. A more balanced estimate is made by Deeg and Puts (2007) on the basis of their study of frail older persons in the population aged over 55 in the Longitudinal Aging Study Amsterdam (l a sa). They took as a basis a definition which includes physical and psychological frailty.1 The prevalence of frailty among people aged 65 and older increased in their forecasts from 408,000 in 2002 to 585,000 in 2020. By measuring the health status of older persons in the West-Friesland region of the Netherlands, Van der Ploeg et al. (2009) estimate the share of frail older persons among the over-75s at 29% in 2007, and project an increase of 74% between 2007 and 2030, to half a million frail over-75s. In addition to age and sex, the forecasting model also took into account developments in marital status and education level. On balance, the growth in the share of frail older persons is comparable with the rise in the share of the over-75s in the population.2 Existing forecasts of the number of frail older persons in the Netherlands in the future are based mainly on demographic estimates. In addition to age and sex distribution, there will be other changes in the older population. Individualisation means there will be more people living alone; the education level of the older population is rising, and their health status is also changing. In chapter 4 we saw that these are all determinants of frailty. In estimating the number of frail older persons in the future, therefore, changes in these determinants will also have to be taken into account. With this in mind, we address the following questions in this chapter: 69


– How will the number of frail older persons develop between now and 2030? – How will the determinants of frailty change in this period? – How will the composition of the frail older population change between now and 2030? Based on the research results presented in chapter 4 and the scp population model, which incorporates changes in demography, education level and health status, we can estimate how the number of frail older persons will develop in the period 2010-2030. This population includes both older persons living independently and those living in institutions.3 Population model Following the determination in chapter 4 of the factors that influence frailty in older persons, this chapter explores trends in those determinants. Sometimes the data are taken from other research institutes, such as the population forecasts by Statistics Netherlands (cbs). In other cases they are drawn from time series from scp’s own studies. It is important that the different time series are combined in a consistent way. For example, it is logical that the number of people with chronic diseases in the Netherlands will increase due to population ageing, because older persons suffer from such diseases more often than younger people. Moreover, the disease burden of the population can develop differently within each age group. Using the data on trends in determinants, the combined database containing data from the Amenities and Services Utilisation Survey (avo) and the Older Persons in Institutions survey (oii) (avo’07 and oii’08, see chapter 4) were then modified. This creates a picture of the ‘population of the future’, which has a different composition from that in 2007/2008. The model can reflect the situation in the year 2010, 2015, 2020, 2025 and 2030, and has been used for a long time in scp estimates of future demand for and use of care (cf. Woittiez et al. 2009; Jonker et al. 2007; Timmermans & Woittiez 2004). Two population models were used. The first is a demographic model based on changes in the age and sex distribution in the population. This model reflects the assumptions in the political debates about population ageing. The second model is what we call the ‘demo-plus’ model. As well as changes in age and sex, this model also makes allowance for changes in household form, education level and multimorbidity. Income is not included in the model because forecasting future income is highly uncertain. Moreover, the variable ‘education level’ incorporates part of the effect of the income variable. The variable ‘severity of disability’ was not included in the model because the share of persons with physical disabilities is likely to remain reasonably stable after correction for age (Van Gool et al. 2009; Zantinge et al. 2011).4 5.1

Trend in the number of frail older persons

The size of the Dutch population aged 65 years and over is projected to grow from around 2.5 million in 2010 to approximately 4.1 million in 2030, an increase of 61% (figure 5.1). In 2010, there were 690,000 frail persons aged 65 years and over in the Netherlands, a share of 27%. If a demographic forecast is constructed on the basis only of changes in age profile and sex distribution, the number of frail older persons rises by around 470,000 to 70


1,160,000 in 2030, an increase of 68% (figure 5.1). The number of frail persons in the older population thus increases more rapidly according to the demographic forecast than the number of over-65s as a whole; this is because the share of very elderly persons is projected to increase more rapidly from 2025 onwards. So far, our forecasts confirm the assumptions in public opinion: the number and proportion of frail older persons will increase strongly due to population ageing. However, the following estimate suggests a different course of events. If we allow not just for demographic trends, but also for changes in education level, household form and multimorbidity, the estimate of the number of frail older persons changes. Figure 5.1 also shows the increase in the number of frail over-65s according to the ‘demo-plus’ model (based on changes in age and sex distribution plus marital status, education level and multimorbidity). Figure 5.1 Number of frail older persons in the population aged 65 years and over, 2010-2030 (in absolute numbers) 4,500,000 4,000,000 3,500,000 3,000,000 2,500,000 2,000,000 1,500,000 1,000,000 500,000 0 2010

2015

2020

2025

2030

number of over-65s number of frail older persons (demographic projection) number of frail older persons (sociodemographic and health projection)

Source: scp population model

If we compare the three trends, we see that the number of frail older persons rises less rapidly according to the demo-plus projection than according to the demographic projection. The demographic projection predicts an increase of 68% in the period 2010-2030, which is greater than the growth in the number of persons aged over 65 (62%). The demo-plus projection predicts lower growth of 50% over this period. In fact, according to the demo-plus model, the percentage of frail older persons among the over-65s actually falls, from 27% in 2010 to 25% in 2030. According to the demo-plus projection, there will be around one million frail persons aged over 65 in 2030. 71


5.2 Sociodemographic trends in the older population Why is it that the number of frail older persons is forecast to rise less quickly than expected? To answer this question, we look at how a number of determinants of frailty will develop in the period 2010-2030. We then go on to discuss in turn age and sex, marital status, education level and multimorbidity. Age and sex The expectation of politicians that the number of frail older persons will increase rapidly is based mainly on the phenomenon of ‘double population ageing’ – the process where not only the share of older persons in the population increases, but also the share of very elderly persons. If we look at the trend in the age of the older population (figure 5.2), we see that double population ageing begins only after 15 years. Between 2010 and 2015 it is mainly the share of 65-69 year-olds which increases. Five years later (from 2015) the share of 70-74 year olds begins to rise rapidly, followed five years later by the share of 75-79 year-olds. As people die, this cohort effect gradually ebbs away, and it is 2025 before there is a significant rise in the number of people aged over 80; this is when the double population ageing process begins. Between 2010 and 2025, the share of people aged over 80 fluctuates at around a quarter of the population aged 65 and older. Thereafter it rises rapidly, to reach 40% in 2050 (cbs, StatLine, not shown in figure).5 The number of men will increase more strongly than the number of women in the period in question. However, this has no consequences for the number of frail older persons, because sex is not a determinant of frailty after correction for other characteristics (see chapter 4). Figure 5.2 Age profile of the population aged 65 years and over, 2010-2030 (in absolute numbers) 1,200,000

65-69 years 70-74 years

1,000,000


800,000

≥ 85 years 600,000 400,000 200,000 0 2010

2015


72

2020

2025

2030


Marital status In chapter 4 it transpired that being widowed and divorced makes people frail and that cohabiting protects them against frailty. Older persons living alone who have never been married are by contrast slightly less frail than their widowed and divorced counterparts. As household form is an important determinant of frailty, changes in the composition of older households in the coming decades will have an impact on the number of frail older persons. The number of older persons living alone who are divorced or have never been married will increase sharply over the coming decades (figure 5.3). However, these are relatively small groups, which will have little impact on the total number of frail older persons. The smaller increase in the number of married older persons (67%) and widows/widowers (18%) is likely to have a bigger effect. Although being widowed makes people frail, the rise in the number of married persons will temper the increase in the number of frail older persons. Figure 5.3 Marital status of the population aged 65 years and over, 2010-2030 (in index figures; 2010 = 100) 300

2010 2015

250

2020 2025

200

2030 150 100 50 0 married

divorced

widowed

never married


Education level Like not living alone, having a higher education level offers protection against frailty (chapter 4). It is therefore interesting to look at how the education level of older persons will develop over the coming decades. Figure 5.4 shows the trend in the distribution of persons with a low, intermediate and high education level in the population during the period 2010-2030. This trend offers an important insight: the sharp increase in the number of older persons with an intermediate and high education level, combined with the decrease in the number of low-educated older persons, partly explains why the number of frail older persons will increase less rapidly than expected.

73


Figure 5.4 Education level of the population aged 65 years and over, 2010-2030 (in index figures; 2010 = 100) 300

2010 2015

250

2020 2025

200

2030 150 100 50 0 low (max. primary education)

junior secondary (lbo, mavo, mulo)

intermediate (mbo, havo, vwo)

high (hbo, university)

lbo = junior secondary vocational education; mavo = general secondary education ; mulo = junior general secondary education; mbo = senior secondary vocational education; havo = senior general secondary education; vwo = pre-university education; hbo = university of applied sciences Source: scp population model

Multimorbidity Many older persons have two or more diseases simultaneously. Multimorbidity is more common among women than men, and becomes more common with increasing age. For example, almost one in three over-75s have more than one chronic disease (Zantinge et al. 2011), but this figure rises to at least three-quarters among the over-85s (Gezondheidsraad 2008: 27; Hoeymans et al. 2008). Between eight and nine out of ten residents of nursing homes have several diseases. The Health Council of the Netherlands forecasts that the number of older persons with multimorbidity will increase from around 1 million in 2008 to 1.5 million in 2020. This expectation is grounded on a demographic projection based on age and sex and on the assumption that the prevalence of diseases will not change much (Gezondheidsraad 2008: 31). Here, we present a forecast which assumes that the prevalence of diseases does change. According to the demo-plus projection, the number of over-65s with multimorbidity6 will increase by more than three-quarters in the period 2010-2030 (figure 5.5). On the other hand, the number of older persons without a chronic disease will also increase, and this will mitigate the increase in the number of frail older persons.

74


Figure 5.5 Number of people with diseases in the population aged 65 years and over, 2010-2030 (in index figures; 2010 = 100) 200

2010

180

2015

160

2020

140

2025

120

2030

100 80 60 40 20 0 no diseases

one disease

several diseases


5.3 Changes in the profile of the frail older population Section 5.2 looked at trends in the older population. In this section we examine trends in the frail older population. How will the profile of this group change between now and 2030? Age The growth in the number of people aged over 80 in the frail older population will be particularly marked (figure 5.6); this is a group where frailty is high. The number of frail persons aged over 85 years will increase gradually over the next two decades until around 2025, after which it will begin rising more rapidly (see notes on double population ageing in § 5.2). Politicians ought to be taking this development into account in formulating their policy objectives, and devote extra attention to the most elderly group in the older population.

75


Figure 5.6 Age profile of frail older persons in the population aged 65 years and over, 2010-2030 (in absolute numbers) 1,200,000

≥ 85 years 80-84 years

1,000,000


800,000

65-69 years 600,000 400,000 200,000 0 2010

2015

2020

2025

2030


Marital status Figure 5.7 shows the trend in the marital status of the frail population aged 65 years and over in the next 20 years. In figure 5.3 we saw that the number of older persons living alone who are divorced or have never been married will increase sharply. However, the share of frail older persons in this group is small and the increase therefore has only a modest effect. The number of widows/widowers among frail older persons is by contrast large and will increase slightly. The attention of politicians for widows and widowers is thus justified and must not diminish; given the rapid growth in the relatively small groups of single persons who are divorced or have never been married, it would be advisable to keep an eye on these groups as well.

76


Figure 5.7 Marital status of the frail population aged 65 years and over, 2010-2030 (in absolute numbers) 1,200,000

never married widowed

1,000,000

divorced married

800,000 600,000 400,000 200,000 0 2010

2015

2020

2025

2030


As we saw in section 5.2, education level has a positive effect on frailty: people with a higher education level are less frail than their lower-educated counterparts. The education level of the population is set to rise between 2010 and 2030 (figure 5.4). However, figure 5.8 shows that the majority of frail older persons in 2030 will still have a low education level. Figure 5.8 Education level of the frail population aged 65 years and over, 2010-2030 (in absolute numbers) 1,200,000

high (hbo, university)

1,000,000

intermediate (mbo, havo, vwo)

800,000

junior secondary (lbo, mavo, mulo)

600,000

low (max. primary education)

400,000 200,000 0 2010

2015

2020

2025

2030

hbo = university of applied sciences; mbo = senior secondary vocational education; havo = senior general secondary education; vwo = pre-university education; lbo = junior secondary vocational education; mavo = general secondary education; mulo = junior general secondary education Source: scp population model 77


Health The share of frail older persons with multimorbidity is high and growing (figure 5.9), as it is in the total older population (cf. figure 5.5). Figure 5.9 Number of people with diseases in the frail population aged 65 years and over, 2010-2030 (in absolute numbers) 1,200,000

several diseases one disease

1,000,000

no diseases 800,000 600,000 400,000 200,000 0 2010

2015

2020

2025

2030


Physical disabilities Most frail older persons have a moderate or severe disability (N.B. this includes residents of institutions), and their number will increase between 2010 and 2030 (figure 5.10). The biggest increase, however (80%), will take place among frail older persons with a mild disability. This group is less visible to policymakers and care professionals, because they are not yet receiving help for their mild disability. They do however form a risk group.

78


Figure 5.10 People with physical disabilities in the frail population aged 65 years and over, 2010-2030 (in absolute numbers) 1,200,000

severe moderate

1,000,000

mild none

800,000 600,000 400,000 200,000 0 2010

2015

2020

2025

2030


5.4 Summary The number of frail over-65s in the Netherlands will increase between 2010 and 2030 from approximately 700,000 to 1 million. However, the share of frail older persons will fall over this period from 27% to 25%. In other words, the number of frail older persons will increase less rapidly than has been assumed to date on the basis of demographic projections, namely by 50% instead of 68%. This is because a number of trends will mitigate the increase, especially the rising education level of the older population. The frail older population will not only grow over the next two decades, but its profile will also change. From around 2025, the share of frail persons aged over 85 years will increase more rapidly. There will also be more and more frail older persons who are divorced or have never married, though this will have little effect on the total number of frail older persons because older persons who are divorced or have never married are a relatively small share of the frail older population, which consists mainly of widows/ widowers and married couples. Most frail older persons have long-term physical disabilities, and this group will grow steadily. The biggest increase will take place in the relatively small group of older persons with a mild disability, a group who do not figure very prominently on the radar of care professionals and policymakers.

79


Notes 1 This definition is an intermediate variant between the narrow and broad definitions of frailty; see chapters 3 and 4. 2 The data are specific to the West-Friesland region, but the outcomes have been generalised for the whole of the Netherlands using figures (forecasts) from Statistics Netherlands (cbs). The authors themselves acknowledge that this generalisation qualifies the outcomes somewhat. cbs does not compile a forecast for education level. The education levels of present-day 50-65 year-olds were used to predict the distribution in 2030. 3 Data were used from the 2007 Amenities and Services Utilisation survey (avo) and the 2008 Older Persons in Institutions survey (oii). The combined avo/oii database constitutes a representative sample of persons who live independently and residents of institutions. For a description of the database used, please refer to chapter 4. In this chapter we report on persons aged 65 years and over. 4 The share of older persons with physical disabilities remained unchanged in the period 1990-2007. As life expectancy increased over the same period, the absolute number of people with a disability did however increase (Van Gool et al. 2009). 5 Since high age is a key determinant of frailty, the number of frail older persons could rise more sharply after 2025. The data on social trends currently do not permit forecasts beyond 2030, however. 6 A measure for multimorbidity was constructed on the basis of the following diseases for which reasonably reliable forecasts are available: asthma and copd; cancer; cardiovascular disease; diabetes; cardiovascular accident (c va); arthritis; chronic joint inflammation; complaints of the back, neck or shoulder; and skin diseases.

80

PART III Development of frailty

Dirk van der Zwan (aged 90 years)

you get older, the risks increase, but everyone is frail. As ‘ AsPsalm 103 says: ‘As for man, his days are as grass:/ as a flower of the field, so he flourisheth./ For the wind passeth over it, and it is gone; /and the place thereof shall know it no more’.

’

the cour se of fr a ilt y

6 The course of frailty Martijn Huisman and Dorly Deeg 6.1

A longitudinal study of frailty

There are not many studies which have investigated the course of frailty over longer periods of time. The few studies that do exist show clearly that the course of frailty is a better predictor of death than a snapshot of frailty at a particular point in time (Puts et al. 2005; Buchman et al. 2009). The study by Buchman et al. (2009) showed that an increase in frailty was accompanied by a heightened risk of premature death, irrespective of the degree of frailty before the increase occurred. There are important reasons for assuming that the course of frailty can vary. Frailty can be interpreted as the consequence of a number of circumstances and events which are interrelated and can be mutually reinforcing. Fried (2001), for example, describes a cycle of frailty in which disease can lead to malnutrition, which in turn can disrupt hormonal processes in the body (Fried et al. 2001). This can weaken the muscle tissue, so that the person concerned loses strength and becomes less mobile, resulting in diminished physical activity. Finally, this can in turn exacerbate the further disruption of hormonal processes, creating a vicious circle. Personal characteristics and environmental factors can exert an influence at various points in this cycle and determine the speed and reversibility of the process. Having a partner who offers support in maintaining a minimum level of physical activity can help break this physical cycle of frailty. Having a home without stairs can also enable someone to remain relatively mobile. A neighbourhood with pavements that are difficult to negotiate will by contrast pose more of an obstacle to the physical activity of frail older persons. In this chapter we look in more depth at the different courses of frailty in older persons in the Netherlands. In our analyses we use a much broader definition of frailty than Fried, namely that set out in chapter 3 of this report. The purpose of this chapter is to describe the course of frailty and to investigate whether that course has any predictive value for admission to a care or nursing home and for death. The following research questions are addressed in succession: What is the course of frailty in Dutch older persons? Which different courses of frailty can be identified and how often does each occur? What is the relationship between individual predictive factors and the course of frailty? How is the course of frailty related to admission to a care or nursing home and to death? Data for the study described in this chapter were drawn from the Longitudinal Aging Study Amsterdam (l a sa). For our purposes, a person must exhibit at least five of the 15 aspects of frailty in the Tilburg Frailty Indicator (t fi) in order to be considered ‘frail’. 6.2 The course of frailty Studied over a period of seven years, the share of frail older persons in the population aged 65-plus (who by the end of the study period were aged 72-plus) increased from 83


22% to 28% (table 6.1). There were three observation moments during the study. The sample sizes were not completely identical at each of the three observation moments because of dropout and death during follow-up. A better picture of the increase in frailty is obtained from the group of older persons who took part in the study at all three observation moments. In this select group of older persons, frailty increased over the seven-year period from 18% to 33% (see ‘longitudinal group’ in table 6.1).1 Although a substantial proportion of the older persons – a third – became frail over the seven-year period, these results also suggest that delaying the onset of frailty is by no means an unattainable ideal for older persons. Table 6.1 Course of frailty in older persons (in percentages and ages)

entire sample (n) average age longitudinal group

frail 1998/1999

frail 2001/2002

frail 2005/2006

703 72.8 18.2

703 75.8 23.5

703 79.8 33.1

Source: vu (l a sa’98-’06)

The t fi identifies three domains of frailty (see chapter 3). In order to gain an impression of the share taken by each of these domains in total frailty, the percentages of frail older persons at each of the three observation moments are shown for physical, psychological as well as social frailty (table 6.2).1 Most older persons are not specifically physically, psychologically or socially frail (table 6.2): around 70% of frail older persons are also physically frail (68.7% in 1998/1999 and 76.8% in 2005/2006), while between around a half and 60% are also socially or psychologically frail. These outcomes suggest that frail older persons are a fairly heterogeneous group in terms of the occurrence of the three specific types of frailty. Table 6.2 Share of older persons who are/are not frail, broken down by physical, psychological and social frailty (vertical percentages) 1998/1999 no yes

2001/2002 no yes

2005/2006 no yes

physically frail not physically frail

7.2 92.8

68.7 31.3

10.9 89.1

71.2 28.2

10.9 89.1

76.8 23.2

psychologically frail not psychologically frail

8.2 91.8

56.1 43.9

8.2 91.8

53.9 46.1

9.3 90.7

59.1 40.9

socially frail not socially frail

11.4 88.6

48.0 52.0

11.5 88.5

50.0 50.0

11.2 88.8

48.2 51.8

Source: vu (l a sa1998-’06) 84


What table 6.2 does not show is to what extent physical, psychological and social frailty overlap. Further descriptive analyses revealed that 3.5% of the respondents exhibited all three types of frailty; 5.1% were both physically and psychologically frail but not socially frail; 4.2% were physically and socially frail but not psychologically frail; and 4.7% were both psychologically and in socially frail but not physically frail. 6.3 Six courses of frailty The course of frailty was subdivided into six categories in this study: – a group who showed no signs of frailty at any time during the seven years; – a group who showed recovery from frailty during the seven years; – a group who developed frailty during the seven years, without recovering from it; – a group who were frail throughout the entire seven years; – a group who died without having become frail; and – a group who died after having become frail.2 Figure 6.1 shows the average frailty score for each of the six courses at the three observation moments. The figure provides an insight into the average degree of frailty between 1998 and 2006 in the six different groups. It shows clearly that the degree of frailty was greatest in the group who died after becoming frail and the group who were frail throughout the period. Recovery from frailty by those who were temporarily frail, and the passing of frailty ‘threshold’ by those who became frail can be read in the figure from the ‘kink’ in 2001/2002 and the subsequent large change up to 2005/2006.

average item score

Figure 6.1 Courses of frailty at three observation moments (average item score)a 0.8

persistently non-frail

0.7

temporarily frail

0.6

became frail persistently frail

0.5

death after non-frail

0.4

death after frail

0.3 0.2 0.1 0 1998/1999

2001/2002

2005/2006

a The average item score lies between 0 and 1; 0 indicates that a person is ‘frail’ on 0% of all individual characteristics, while 1 indicates that someone is ‘frail’ on all individual characteristics (out of a total 15 characteristics). Source: vu (l a sa’98-’06)

85


The biggest group in the entire sample are those who are persistently non-frail, i.e. nonfrail throughout the period studied (39%). Temporary or persistent frailty are the least common. More than 15% of older persons died within two years without having become frail; that is 45% of all older persons who died during follow-up (164 out of a total of 368). All demographic factors studied were found to correlate with the course of frailty in question. Older persons and women, widows and widowers and people with a low education level were more often persistently frail and less often persistently non-frail. Men died without having been frail much more often than women. Married persons also died relatively often without having been frail. Over 60% of those aged over 85 years who died had been frail.3 The relationship between health, lifestyle and personality and course of frailty was also investigated. Having two or more chronic diseases (e.g. cardiovascular disease, diabetes and arthritis) was found to have an influence on persistent frailty, as was having two or more functional disabilities, smoking on a daily basis, being obese (bmi = 30) and having the feeling of having little control over one’s life. It is striking that a relatively high proportion of moderate drinkers are persistently non-frail – a higher percentage than in the group who drink no alcohol. When discussing these results, it should be borne in mind that the causal direction of the relationships between the individual risk factors and between the risk factors and frailty cannot always be determined with certainty, although the factors were measured prior to the start of the period 1998 - 2006. In particular, the relationship between frailty and chronic diseases and functional disabilities cannot always be determined with certainty. These factors can influence each other and can be a joint consequence of lifestyle characteristics. An in-depth analysis of causal relationships, in which the relationships between all factors are controlled for each other, lies beyond the scope of this study; it is however plausible that lifestyle factors will be a major cause of frailty rather than the reverse. Combating smoking and excessive alcohol use and promoting physical activity is thus important as a means of reducing and preventing frailty. 6.4 Does the course of frailty predict care or nursing home admission and death? Figures 6.2 and 6.3 show which percentage had been admitted to a care or nursing home for each course of frailty in 2005/2006. The highest percentage of admissions is found in the group who became frail between 1998/1999 and 2001/2002 (18% of the group were admitted). There is a large difference between the groups who became frail and remained frail on the one hand and groups who were not frail or were temporarily frail on the other.4

86


Figure 6.2 Share of admissions to care or nursing homes, for four courses of frailtya, 2005/2006 (in percentages) 20 18 16 14 12 10 8 6 4 2 0 not frail

temporarily frail

became frail

persistently frail

a The course of frailty was determined between two observation moments, 1998/1999 and 2001/2002. Source: vu (l a sa’98-’06)

Frailty has high predictive value for admission to a care or nursing home. Among the groups who became frail and who were persistently frail throughout the period, the likelihood of admission is greater than in the group who were persistently non-frail. Frail older persons are five times more likely on average to be admitted to a home than older persons who are persistently non-frail. The relationship between frailty and admission to a care or nursing home remains after controlling for age, sex and education, although it does weaken. This implies that only a small part of the greater risk of admission for people who are persistently frail or have become frail can be explained by the fact that they are older, have a low education level or are female. Figure 6.3 shows a progressive relationship between frailty and death. The group with the lowest percentage of deaths within three years are those who are persistently nonfrail (just under 8%). The group with the highest percentage of deaths are the persistently frail, 22% of whom died during the period studied.5

87


Figure 6.3 Share of deaths by four courses of frailty, within three years after the observation moment 2001/2002 (in percentages) 25

20

15

10

5

0 not frail

temporarily frail

became frail

persistently frail

a The course of frailty was determined between two observation moments, 1998/1999 and 2001/2002. Source: vu (l a sa’98-’06)

The results show that frailty is a predictor for death, including after controlling for age, sex and education level. Those who became frail and who were persistently frail during the study period show the greatest risk of dying within three years after 2001/2002, with the persistently frail having by far the greatest risk of dying. 6.5 Summary During a period of seven years we monitored persons aged 65 years and over in order to establish the course of frailty in the older population, as well as to determine the occurrence of specific courses of frailty, the relationship between individual predictive factors and these courses, and the relationship between the course of frailty and death and admission to a care institution. We saw a gradual increase in frailty in the monitored group of older persons, from 18% to 33%. Just under 40% of older persons were persistently non-frail throughout the research period. As regards the relationship between course of frailty and potential predictive factors, we found among other things that all demographic factors studied are related to the particular course of frailty. Older persons and women, widows and widowers, and people with a low education level were found to be more frequently persistently frail and less frequently persistently non-frail. Similarly, all health, lifestyle and personality characteristics studied were found to be related to frailty in older persons, with lifestyle indicators 88


such as smoking and body weight being particularly related to (physical) frailty (Hubbard et al. 2009, 2010). Prevention of these unhealthy lifestyles could limit frailty in the older population. The course of frailty predicts admission to a care or nursing home. There was a large difference in the percentage who were later admitted to a care or nursing home between those who became frail and remained frail on the one hand and those who were not frail or temporarily frail on the other. Of the group who were persistently frail, 14% were ultimately admitted to a care or nursing home, while this applied for 18% of those who were not frail to start with but became frail later. The corresponding percentages for those who were not frail and those who were temporarily frail are just 4% and 2%, respectively. Frailty was also a powerful predictor of death, independent of age, sex and education; of the group who were and remained frail, 22% ultimately died within three years; among those who became frail the figure was 15%. It may be concluded from the results that frail older persons are a group who warrant policy attention. Preventing frailty and fostering recovery from it by older persons would probably boost their survival chances in the short term and reduce the need for admission to a care institution. It is worth drawing attention once again to the results for the group who recovered from frailty. Temporary frailty occurs in only a small part of the population, but has a strikingly favourable effect on the chance of death and admission to a care or nursing home. Additionally, even at great age and even after the onset of frailty, recovery to a situation without frailty remains possible. Notes 1 Table 6.2 contains data on everyone in the sample about whom it was known at the particular observation moment whether they were frail or non-frail, and in which domains. A model-based description of the different domains of frailty is given in chapter 3 of this report. 2 Death was included in establishing these different courses of frailty so that it would not only be survivors who were represented in the analyses; this would have distorted the results. 3 Chi-squared tests give an indication of the extent to which there is statistical evidence for a correlation between these predictors and the different groups. Socioeconomic status was not included in this summary as a predictor of frailty, but is discussed in chapter 10. 4 The analyses contain data on all participants who were still alive in 2005/2006 and who were either living independently or were in a care or nursing home. Four subgroups were distinguished within this group of participants, depending on the course of frailty: – not frail in 1998/1999 and not frail in 2001/2002 = persistently non-frail; – frail in 1998/1999 but no longer frail in 2001/2002 = temporarily frail; – not frail in 1998/1999, but frail in 2001/2002 = became frail; and – frail in both 1998/1999 and 2001/2002 = persistently frail. 5 Predicting the likelihood of death requires a different analysis than predicting the chance of admission to a care or nursing home, because validated data on mortality are available in the l a sa database only until 1 September 2007. This is too soon after the observation in 2005/2006 to see the trend in deaths during the study period, and it would require respondents to remain alive until 2005. It was therefore decided to look at the course of frailty between 1998 and 2001 in relation to the chance of 89


dying within three years after the 2001 observation. A maximum term of three years after the 2001 observation was chosen to ensure that sufficient respondents had died to permit a multiv ariate analysis. Only four groups were distinguished in the analysis: not frail, temporarily frail (frail in 1998, not in 2001), became frail (not frail in 1998, frail in 2001) and persistently frail.

90

Elisabeth Turfboer-Vink (aged 91 years)

realised that I was frail after I’d had a fall, because I was ‘ Istillonlydoing everything myself. On my 89th birthday I broke my hip when I fell in the toilet. I thought: ‘How am I going to get out of here?’, I thought. ‘ Who’s going to help me?’. I finally managed to get to the bedroom, but at a time like that you do feel frail, partly because you’re dependent.

’

ph ysic a l fr a ilt y

7 Physical frailty Martijn Huisman and Dorly Deeg 7.1

What is physical frailty?

In chapter 6 we discussed the course of frailty in general. In chapters 7, 8 and 9 we look at the three domains of frailty and explore the course of physical, psychological and social frailty. These forms of frailty are found to be clearly related to each other. Many experts believe that physiological characteristics of frailty lie at the heart of the concept (see chapter 3). Key characteristics of physical frailty are undernourishment, reduced energy levels, reduced strength and slowness (Bergman et al. 2007). Physical frailty is one of the three domains of frailty identified in the Tilburg Frailty Indicator (t fi), which was described in chapter 3. The physical domain of the t fi fits the narrow definitions of frailty, which are limited primarily to physiological characteristics. Assessing physical frailty must be distinguished from other widely used measures for assessing the health of older persons, such as (multi)morbidity and functional disabilities (see chapter 3). It is plausible that physical frailty is the result of years of exposure to a variety of harmful influences on the body, resulting in molecular damage (Kuh and the New Dynamics of Ageing (nda) Preparatory Network 2007). It is unclear whether the characteristics of physical frailty represent an underlying medical syndrome, in other words whether a pathological process is the common cause of all symptoms, or whether they constitute a complex of symptoms which frequently coincide but are not necessarily physiologically linked (Bergman et al. 2007). The physiological process which we discussed briefly in the introduction to chapter 6 is an example of a medical syndrome. It gives rise to a vicious circle in which undernourishment can lead to disruption of hormonal processes, then to weakening of muscle tissue, reduced strength and reduced mobility, and ultimately to reduced physical activity, which in turn can further disrupt the hormonal processes (Fried et al. 2001). The approach followed in compiling the t fi is agnostic concerning the possibility of an underlying syndrome and is based on the principle that the clinical and policy value of the selected physical characteristics lies primarily in their ability to help predict health problems. It was pointed out in chapter 6 that frailty is an important predictor of health outcomes such as admission to a care or nursing home and the likelihood of death within a relatively short period. As frailty is a composite of different domains – physical, psychological and social – the question then is what relative contribution each of these domains makes. We can formulate a variety of hypotheses. For example, it appears plausible that physical frailty is a better predictor of premature death than psychological and social frailty; after all, physical frailty is partially related to major causes of death, such as chronic disease. Following admission to a care institution, it seems similarly plausible that social frailty plays an important role; if someone has lost their partner or wider social network, admission to a care or nursing home will become more likely in order to 93


accommodate their loss of independent functioning. There are thus reasons to assume that the influence of the different domains of frailty on death and/or admission to a care institution is not uniform. The questions addressed in this chapter are concerned with physical frailty and are answered on the basis of data from the l a sa (Longitudinal Aging Study Amsterdam) database: 1 What is the course of physical frailty? 2 Which different courses of physical frailty can be identified? 3 What is the relationship between various predictive factors and the course of physical frailty? 4 What is the relationship between the course of physical frailty and social and psychological frailty? 5 What is the relationship between the course of physical frailty and admission to a care or nursing home and death?1 7.2 The course of physical frailty During a study period spanning seven years, the percentage of physically frail persons2 in the population aged 65 years and over at the start of the study and 72 years and over at the end of it rose from 10% to 17% (table 7.1). The course of physical frailty was also examined among the 730 respondents who took part in the study at all three observation moments (i.e. excluding persons who died or dropped out for other reasons). In this select group of 730 respondents, there was a sharp rise in physical frailty over the sevenyear period, from 7.3% to 21.4%.3 Physical frailty comprises a total of eight separate characteristics: little or no walking; unintentional weight loss; difficulty walking; difficulty maintaining balance; poor hearing; poor vision; lack of grip strength; and physical tiredness. Individual characteristics which occur relatively commonly are poor balance and physical exhaustion. More than half the older persons in the study exhibited none or only one characteristic of physical frailty at all observation moments. Characteristics of physical frailty which occurred with increasing frequency during the study period were difficulty walking, difficulty maintaining balance and physical tiredness. During the course of the study, more older persons became physically frail, although after seven years almost half of them still exhibited none or only one characteristic of physical frailty. These results suggest that delaying the onset of physical frailty is not an unattainable ideal for older persons.

94


Table 7.1 Course of physical frailty in older persons (in percentages and ages)

average age % physically frail characteristics of physical frailtyb little/no physical activity (walking) unintentional weight loss difficulty walking difficulty maintaining balance poor hearing poor vision weak grip strength physical tiredness number of characteristics of physical frailty 0 1 2 3 4 ≥5

frail 1998/1999 (n = 1042)a

frail 2001/2002 (n = 867)a

frail 2005/2006 (n = 674)a

73.4 10.4

75.6 14.8

78.7 17.2

15.2

19.1

18.1

8.8 15.5

11.2 22.2

12.6 25.2

22.9 9.9 20.4 16.4 32.2

27.1 13.1 26.8 14.0 36.8

34.7 14.5 26.6 12.3 40.4

32.1 28.9 18.0 11.4 5.3 4.2

30.2 25.8 18.2 13.6 6.6 5.7

23.1 28.1 22.5 13.2 7.9 5.2

a (n) is the unweighted sample size; the percentages in the tables are weighted to make them representative for the entire older population aged 65 years and over in 1998/1999, 68 years and over in 2001/2002 and 72 years and over in 2005/2006. b Measured using the Tilburg Frailty Indicator – physical domain. Source: vu (l a sa’98-’06)

7.3

Six courses of physical frailty

As in chapter 6, we divided the participants in the study into six groups, each with a different course of frailty. Figure 7.1 shows the average item score for physical frailty at the three observation moments for each of the six courses of frailty. It emerges clearly that the group who died after becoming frail and the group who were frail throughout the study exhibit the greatest degree of frailty. The degree of frailty increases over the sevenyear period in all groups, except those who were temporarily frail.

95


average item score

Figure 7.1 Courses of physical frailty at three observation moments (average item score)a 0.8


0.7

temporarily frail

0.6


0.5


0.4

death after frail

0.3 0.2 0.1 0 1998/1999

2001/2002

2005/2006

a The average item score lies between 0 and 1; 0 indicates that a person is ‘frail’ on 0% of all individual characteristics, while 1 indicates that someone is ‘frail’ on all individual characteristics. Source: vu (l a sa’98-’06)

Half (50.1%) of the older persons in the study were persistently not physically frail throughout the study period, and only a very small group were persistently frail (2.8%). There is however a larger group who became frail (10.5%), and also a larger group who died after having been frail (12%) (table 7.2). If we look at the relationships between the different courses of frailty and demographic and social characteristics, we see that the oldest age group, women, those with a lower education level and widows/widowers were most often persistently frail. This relationship mirrors the relationships reported in chapter 6. It is striking that women are persistently non-frail slightly more often than men. This is because of the higher percentage of deaths among men, which means that the share of surviving women – both frail and non-frail – is greater than among men. The expectation is that there will be relationships between health and lifestyle on the one hand and physical frailty on the other. This expectation is confirmed by these findings. All (unhealthy) lifestyle characteristics are found to be associated with an unfavourable course of frailty, with the exception of alcohol use, which is associated with reduced frailty. Other health-related factors, such as having chronic diseases and functional disabilities, are also closely associated with physical frailty. These results correspond with scientific findings which demonstrate a correlation between physical frailty and related phenomena such as comorbidity and functional disabilities (see also chapters 3 and 4).

96


7.4 Relationship between course of physical frailty and psychological and social frailty in the longer term The characteristics sex, age, education and psychological and social frailty are related to the course of physical frailty. Physical frailty occurs less in men and younger older persons. The relationship between psychological frailty and physical frailty was stronger over the seven years of the study than the relationship between social and physical frailty. It is interesting in this light to analyse how the different courses of frailty are related to each other over time. How do psychological and social frailty progress in the six courses of physical frailty? Psychological frailty is found to increase in every category of physical frailty, except in the group who die without having been frail. It is also notable that the group who became physically frail during the study period exhibit a sharp increase in psychological frailty as well (figure 7.2a). Physical and psychological frailty thus often go hand in hand. Figure 7.2a Different courses of psychological frailty at three observation moments (average item score)a

average item score

0.40


0.35

temporarily frail

0.30


0.25


0.20

death after frail

0.15 0.10 0.05 0.00 1998/1999

2001/2002

2005/2006


The relationship between the course of physical frailty and social frailty is more irregular (figure 7.2b). Only the groups who became frail and those who were persistently nonphysically frail show an increase in social frailty. Among those who were temporarily and persistently frail, by contrast, a decline in social frailty is observed. For the group who were persistently physically frail, this decline may be related to seeking social support in order to compensate for reduced functioning. 97


Figure 7.2b Different courses of social frailty at three observation moments (average item score)a 0.50


0.45

temporarily frail

0.40

became frail

average item score

0.35

persistently frail

0.30


0.25

death after frail

0.20 0.15 0.10 0.05 0.00 1998/1999

2001/2002

2005/2006


7.5

Does the course of physical frailty predict admission to a care or nursing home and death?

Older persons who were persistently frail throughout the entire study period show the highest percentage of care and nursing home admissions (22%) (figure 7.3). There is a pronounced difference in admissions between the groups who became and remained frail on the one hand and the groups which were either non-frail or temporarily frail on the other. The groups who became frail and remained frail have by far the greatest chance of being admitted to a care or nursing home.4

98


Figure 7.3 Share of admissions to a care or nursing home in four different coursesa of physical frailty, 2005/2006 (in percentages) 25

20

15

10

5

0 not frail

temporarily frail

became frail

persistently frail

a The course of frailty was determined between two observation moments: 1998/1999 and 2001/2002. Source: vu (l a sa’98-’06)

Older persons who become frail and who are persistently frail have a high chance of being admitted to a care or nursing home, and this remains the case after controlling for age, sex and education. The chance that members of these groups will be admitted to a home is almost six times as great as for the persistently non-frail. The relationship between physical frailty and admission remains intact after controlling for social and psychological frailty. The chance that someone will be admitted to a care or nursing home because of physical frailty (physical domain of the t fi) is greater than the chance of admission because of overall frailty (t fi). The group of older persons who became frail over a period of three years (1998/19992001/2002) contains the greatest number of deaths in 2005/2006, and over 23% (figure 7.4).5 The groups which were not frail and those who were only temporarily frail contain much lower percentages of deaths than the groups which became frail or were persistently frail.

99


Figure 7.4 Share of deaths in four different coursesa of physical frailty within three years after the observation moment 2001/2002 (in percentages) 25

20

15

10

5

0 not frail

temporarily frail

became frail

persistently frail


Physical frailty is still a predictor for death after controlling for age, sex and education. The groups who became frail and who were persistently frail have the greatest chance of dying within three years after 2001/2002. Those who became frail and those who were persistently frail still have the greatest chance of dying after controlling for social and psychological frailty. This suggests that physical frailty is a strong predictor of death, regardless of the degree of social or psychological frailty which accompanies it. 7.6 Summary During the study period of seven years, the percentage of physically frail persons in the population who were aged 65-plus at the start of the study and 72-plus at the end increased from 10% to 17%. Characteristics of physical frailty which became increasingly common as the study period progressed were difficulty walking, difficulty maintaining balance and physical tiredness. The number of physically frail older persons increased during the course of the study. However, after seven years almost half the older persons in the study still had no or only one characteristic of physical frailty. These results suggest that avoiding physical frailty is not an unattainable ideal for older persons. The characteristics that are strongly related to mobility offer pointers for a policy aimed at preventing physical frailty or reducing its consequences. Examples are adaptations in

100


the home and facilities in the neighbourhood to increase accessibility for people with impaired mobility. Half the older persons in the study were not physically frail throughout the study period, and 64% of the older persons who died were not frail several years before death (in our study this applied to 208 out of a total of 326 deaths). Nonetheless, there is a large group who are confronted with physical frailty for an extended period: a total of around 29% of older persons. These older persons became frail, were persistently frail throughout the study period or became frail but recovered; some died after a period of frailty. Physically frail older persons are an important target group for policy, because physical frailty is found to be a predictor for admission to a care or nursing home and for death, regardless of sex, age and education and independent of psychological and social frailty. All demographic factors studied were found to be associated with the specific course of physical frailty. Older persons and women, widows and widowers and people with a low education level are more often confronted with physical frailty. Similarly, all health, lifestyle and personal characteristics studied were found to correlate with physical frailty. Physical frailty is related to psychological frailty and social frailty, though the relationship with psychological frailty is stronger. Becoming physically frail is often found to be accompanied by an increase in both social and (particularly) psychological frailty. The correlation between the different forms of frailty is also apparent from the finding that the relationship between physical frailty and death weakens after controlling for social and psychological frailty. Nonetheless, physical frailty is a powerful predictor of admission to a care or nursing home and of death, independent of the presence or absence of psychological or social frailty. People who become physically frail and people who are persistently frail, in particular, have a relatively high chance of being admitted to a care or nursing home or of dying. Notes 1 With the exception of research question 4, these questions parallel the research questions that were answered in chapter 6 in relation to total frailty. These questions are also addressed in chapters 8 and 9 on psychological and social frailty. 2 Persons who had four or more of the eight characteristics of physical frailty were classed as ‘physically frail’. In using this cut-off point, we deviate from the cut-off point of three or more characteristics as proposed by Gobbens (2010). Applying the latter cut-off point produced prevalences that were the same as the prevalence of total frailty, whereas physical frailty is one of the three domains of frailty. The prevalences that were obtained when a cut-off point of four or more characteristics was applied correspond more closely to the prevalences of physical frailty in the international literature (Fried 2001; Santos-Eggiman et al. 2009). 3 The sample reduced during the study period by drop-out, among other things due to the death of participants. For this reason, the percentages are given for both the full sample, for which data are available on frailty at the individual observation moments, and for the portion of participants for whom we have data at all three observation moments (the longitudinal group; table 1). The percentages for this latter group can be compared at the successive observation moments and differences can be interpreted in terms of an increase or decrease. This is a relatively strong group of older 101


persons compared with those who dropped out of the study earlier (e.g. because of death) and for whom data on frailty at all observation moments are not available. Percentages were calculated for the participants for whom data were available on at least six of the eight characteristics of physical frailty. Cut-off points for determining who was and was not frail were proportionally adjusted for participants for whom we had data on six or seven characteristics. 4 The analyses contain data on all participants who were still alive in 2005/2006 and who were either living independently or in a care or nursing home. Four subgroups were distinguished within this group of participants, depending on the course of frailty: – not frail in 1998/1999 and not frail in 2001/2002 = persistently non-frail; – frail in 1998/1999 but no longer frail in 2001/2002 = temporarily frail; – not frail in 1998/1999, but frail in 2001/2002 = became frail; and – frail in both 1998/1999 and 2001/2002 = persistently frail. As the predictive value of physical frailty for admission to a care or nursing home can only be determined for those who are still alive, these analyses were performed on all persons who were still alive in 2005/2006. 5 Predicting the likelihood of death requires a different analysis than predicting the chance of admission to a care or nursing home, because validated data on mortality are available in the l a sa database only until 1 September 2007. This is too soon after the observation in 2005/2006 to see the trend in deaths during the study period, and it would require respondents to remain alive until 2005. It was therefore decided to look at the course of physical frailty between 1998 and 2001 in relation to the chance of dying within three years after the 2001 observation. A maximum term of three years after the 2001 observation was chosen to ensure that sufficient respondents had died to permit a multivariate analysis. Only four groups were distinguished in the analysis: not frail, temporarily frail (frail in 1998, not in 2001), became frail (not frail in 1998, frail in 2001) and persistently frail.

102

Johanna Vis - den Dulk (aged 80 years)

I felt frail when my husband died. My niece said to me then: ‘ ‘Once you’ve buried your husband, he will gradually fade away, and so will your sadness’. And it’s true that it did gradually get easier. Now I feel good again. It’s all a bit difficult sometimes, but I can still do everything myself.

’

p s ycholo gic a l fr a ilt y

8 Psychological frailty Hannie Comijs 8.1 What is psychological frailty? Attention for psychological frailty has been growing in recent years. Several studies have shown that ageing is often accompanied by an increase in psychological complaints and cognitive disabilities. Many older persons have symptoms of depression and anxiety which greatly impede their daily functioning (Beekman et al. 1997, 1998). In addition, many older persons are lonely (Van Tilburg et al. 2004) or feel they are losing control of their lives (Jonker et al. 2009). Virtually all older persons are also confronted with a decline in their cognitive abilities. Their memory becomes less reliable, their speed of thought reduces and their ability to do several things at the same time diminishes. The rate of this cognitive decline varies enormously from individual to individual, and is closely related to psychological and physical health. Older persons who are depressed, for example, often also have problems with their memory or ability to concentrate, as do people who suffer a great deal of pain or severe fatigue. Cognitive disabilities can have an adverse effect on day-to-day functioning and are by no means always the result of dementia (Comijs et al. 2004, 2005). Studies of frailty which have also looked at psychological factors such as these all suggest that the psychological domain plays an important role in the concept of frailty (Puts et al. 2005; Levers et al. 2006; Gobbens et al. 2010). As people get older, their chance of developing chronic diseases and functional disabilities increases. In addition, their social networks often shrink and they may lose their partner. To maintain good quality of life and mental well-being as they get older, people must have a way of compensating for lost capacities (Baltes et al. 1999). Some people are able to do this fairly readily, but people who are not as adaptable are unable to do so, and therefore fail to maintain their psychological well-being when their physical health declines, functional disabilities increase and their social network shrinks. The degree of adaptability depends greatly on psychological factors, especially personality characteristics, such as the degree of independence and extraversion. People who have always had little control over the things that happen in their lives, or who have allowed themselves to be very dependent on others, will be less able to adapt to changing circumstances later in life. As a result, these older persons are at great risk of developing psychological complaints. Conversely, people with a large number of psychological complaints, such as depression, are at greater risk of developing physical diseases, among other things due to poor self-care, undernourishment, reduced mobility and social isolation. In other words, there appears to be a strong interaction between psychological, physical and social frailty. In order to improve the quality of life of frail older persons and prevent or delay adverse health outcomes such as severe disabilities, admission to a care or nursing home or death, it is important to know which psychological factors influence frailty. After all, 105


while some diseases may not be preventable or curable, a number of psychological characteristics such as depression, anxiety or loneliness can be influenced. Treating these problems using tried and tested methods can considerably improve the quality of life of frail older persons. This chapter investigates the characteristics, the course and the consequences of psychological frailty in persons aged 65 years and over. It does this by drawing on data from the Longitudinal Aging Study Amsterdam (l a sa), a longitudinal study of the physical, cognitive, social and emotional functioning of the older population in the Netherlands. This chapter is closely related to chapters 7 and 9, which report on physical and social frailty in older persons from the l a sa cohort. The research questions that will be answered in this chapter are as follows: – – – –

How often does psychological frailty occur? What is the course of psychological frailty? What are the main characteristics of people who are psychologically frail? What is the relationship between psychological frailty and the two other forms of frailty: physical and social frailty? – How is the course of psychological frailty related to admission to a care or nursing home and to death? 8.2 Course of psychological frailty To establish psychological frailty, we used the Tilburg Frailty Indicator (t fi: see chapters 3 and 6). The t fi contains four items on psychological frailty: – – – –

problems with memory; feeling down; feelings of anxiety or nervousness; feelings of helplessness.

Helplessness here means not being well able to cope with problems. Problems with memory are the most frequently reported item. Moreover, the percentage of people with memory problems increases over time from 26% in 1998 to 34% in 2005 (table 8.1). In 1998, this population comprised persons aged 65 years and over, who in 2005 were 72 years and over. Many people also reported feeling down (around 22%) and feelings of helplessness (around 17%). Both percentages remain fairly stable over time. Feelings of anxiety or nervousness are the least often reported, but are still reported by 14% and 17% of respondents, respectively. If people display two or more of the aforementioned characteristics, they are classed as psychologically frail. As can be seen from table 8.1, the percentage of people with psychological frailty increases with age, from 22% in 1998 to 26.6% in 2005. In a select group of respondents who participated in the study at all three observation moments (i.e. excluding persons who died or dropped out for other reasons), psychological frailty increased more strongly during this period, from 16.2% to 26.2%. 106


Table 8.1 Course of psychological frailty in older persons (in percentages and ages)  

1998/1999

2001/2002

2005/2006

problems with memory feeling down nervous or anxious number of characteristics

26.0 21.2 13.6 16.8

29.8 22.3 17.0 17.1

34.3 22.0 16.8 17.4

number of characteristics none one two three four % psychologically fraila

53.4 25.8 13.0 6.1 1.7 22.0

46.7 32.4 12.0 6.1 2.8 22.6

47.5 29.5 13.7 6.8 2.6 26.6

average age (sd)b minimum/maximum age (n)

73.9 (6.2) 65.0 / 91.6 1267

76.1 (5.8) 67.7 / 94.3 1098

79.0 (5.1) 72.0 / 98.6 672

a People with two or more characteristics of psychological frailty. b sd = standard deviation. Source: vu (l a sa’98-’06)

8.3 Six courses of psychological frailty In order to map out the course of psychological frailty during the three observations over a period of seven years, six different groups were formed, each with their own specific course (see chapter 6).1 Women are found in psychologically frail groups more often than men (temporarily frail, became frail and persistently frail), while men more often die without having been psychologically frail. The group who remained not frail during the six years of the study period are the youngest group, and as expected people who died during the study period were relatively speaking the oldest. People aged between 65 and 85 years most often become psychologically frail, while almost 50% of people aged 85 years and over die without having been psychologically frail, and 33% die after having been psychologically frail. Widows and widowers are the least often psychologically stable and relatively more often die, sometimes after being psychologically frail, sometimes not. There are no clear differences in education level and religious faith between the different courses of psychological frailty.

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Figure 8.1 Six courses of psychological frailty at three observation moments (average item score)a

average item score

0.8


0.7

temporarily frail

0.6


0.5


0.4

death after frail

0.3 0.2 0.1 0.0 1998/1999

2001/2002

2005/2006


People with two or more chronic diseases or functional disabilities are least often psychologically stable and most often die after having been psychologically frail. The group who have no chronic diseases or no more than one functional disability contains the relatively largest number of people who are temporarily psychologically frail.2 Older persons with a low score on the m mse (Mini-Mental State Examination) dementia test, which screens for the presence of cognitive disorders, died most frequently during the study period, after having been psychologically frail or otherwise. As expected, the psychological complaints differ in each of the courses of psychological frailty identified. People with multiple symptoms of depression or anxiety are relatively often temporarily or persistently frail and more often die after having been psychologically frail. Analysis of the average depression and anxiety scores shows that a sizeable proportion of the persistently frail group probably suffer from an anxiety or depressive disorder. Certain personality characteristics also differ between the different courses of psychological frailty. People with low competence expectations and little sense of control over their lives are relatively often temporarily or persistently frail and more often die after having been psychologically frail. People who score highly on a neuroticism scale are often among the psychologically frail groups and most often die after having been psychologically frail. Finally, there are also differences between the courses of psychological frailty with respect to feelings of loneliness. Only 28% of the most lonely people are persistently non-frail; people in this group are often temporarily or persistently psychologically frail and more often die after having been psychologically frail.

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8.4 Relationship between course of psychological frailty and physical and social frailty in the longer term There appears to be a relationship between psychological frailty, age and sex: the chance of psychological frailty is higher for people who are older and for women. However, these relationships disappear after inclusion of physical and social frailty in the regression model; evidently these are stronger predictors of psychological frailty than age and sex. The analyses thus show that the more psychologically frail people are, the more physically and socially frail they are. In order to illustrate the relationship between psychological frailty and the course of physical and social frailty, figures 8.2 and 8.3 portray the course of physical and social frailty for the different courses of psychological frailty. Figure 8.2 Course of physical frailty by six different courses of psychological frailty (average item score)a 0.50


0.45

temporarily frail

0.40

became frail

average item score

0.35

persistently frail

0.30


0.25

death after frail

0.20 0.15 0.10 0.05 0.00 1998/1999

2001/2002

2005/2006


There is clearly a relationship between psychological frailty and physical frailty (figure 8.2). For example, people who die after having been psychologically frail also score highest on physical frailty at the first observation moment and also display a sharp increase in physical frailty in the subsequent three years. People who became psychologically frail during the study period also recorded a fairly low physical frailty score at the start of the study, which increased fairly sharply over the six-year study period. The groups ‘persistently frail’ and ‘death after non-frail’ also recorded fairly high physical frailty scores at the start of the study period. People who were psychologically non-frail were also the least physically frail during the six-year period.

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Figure 8.3 Course of social frailty by six different courses of psychological frailty (average item score)a 0.6

persistently non-frail temporarily frail

0.5

average item score

became frail 0.4

persistently frail death after non-frail

0.3

death after frail

0.2 0.1 0.0 1998/1999

2001/2002

2005/2006


The relationship between psychological frailty and social frailty is slightly less convincing than that between psychological and physical frailty, but can still be clearly seen in figure 8.3. Psychologically frail persons are also the most socially frail. Social frailty increases as people have been psychologically frail for longer, but declines in the group who die after having been psychologically frail. Temporary psychological frailty appears to have no influence on social frailty. People who were psychologically non-frail throughout the six-year period were also the least socially frail. 8.5 Does the course of psychological frailty predict admission to a care or nursing home and death? Admission to a care or nursing home is closely associated with physical decline (see chapter 7), but also with cognitive decline, whether caused by dementia or otherwise (Comijs et al. 2005). The extent to which people are able to function independently depends greatly on their cognitive capacity, such as memory and the ability to plan and organise. Depression and anxiety are much less likely to be reasons for admission to a care or nursing home; these complaints are initially treated in the primary health care system or a mental health institution, with the aim being maintenance of or a return to an independent residential setting. Depression may be associated with the early stages of dementia, and in that case admission to a care or nursing home will often be unavoidable in the longer term.

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As figure 8.4 shows, just under 7% of people who were psychologically frail during a period of three years were admitted to a care or nursing home during the subsequent period of four years. The figure among those who were not psychologically frail, were temporarily psychologically frail or became psychologically frail, is 2-3%.3 Figure 8.4 Share of admissions to a care or nursing home for four different coursesa of psychological frailty 2005/2006 (in percentages) 7 6 5 4 3 2 1 0 not frail

temporarily frail

became frail

persistently frail


Those who were persistently psychologically frail throughout the period studied appear to be three times more likely to be admitted to a care or nursing home as people who were not frail at all. If we correct the analyses for age, sex and education and for physical and social frailty, however, these relationships prove not to be statistically significant.4 People who were temporarily psychologically frail have a high chance of admission, and this chance increases to around 2.5 after correction for the other factors. People who became frail have a substantially greater chance of being admitted. Psychological frailty can thus lead to a greater likelihood of admission to a care or nursing home. Older persons who are depressed, especially if they are also lonely, are at greater risk of death, as are persons with cognitive problems (Smits et al. 1999). There also appears to be some cognitive decline in the period prior to death (Wilson et al. 2003). We might therefore expect there to be a relationship between psychological frailty and mortality. Figure 8.5 shows the percentage of people who died in the period between 2002 and 2005 for each course of psychological frailty in the period between 1998 and 2001. Of those who were temporarily psychologically frail (frail in 1998 but not in 2001), 40% died 111


during the subsequent three-year period.5 A much lower percentage of those who became frail or were persistently frail died, namely between 20% and 24%. Only 12% of those who were not psychologically frail at both observation moments died during the subsequent three years. Figure 8.5 Share of deaths in four different coursesa of psychological frailty within three years after the observation moment 2001/2002 (in percentages) 45 40 35 30 25 20 15 10 5 0 not frail

temporarily frail

became frail

persistently frail


Older persons who are temporarily psychologically frail are the most likely to die: more than five times more likely than persons who are not psychologically frail. After correcting for age, sex and education and for physical and social frailty, this likelihood actually increases to more than six times. This is a striking finding. On closer inspection of the data, it transpires that persons who were temporarily psychologically frail and subsequently died were also people who had very high physical frailty scores. Evidently there is a group who are capable of regaining their psychological well-being despite a further decline in their physical health and their ultimate death. People who are persistently psychologically frail or become frail are roughly twice as likely to die as those who are not frail, but after correcting for age, sex and education and for physical and social frailty, this difference is no longer statistically significant. 8.6 Recommendations for research and policy Our study shows that a quarter of older persons aged 65 years and over are psychologically frail. A large proportion of this group report symptoms of depression or anxiety. 112


Research and clinical practice have shown that older persons generally do not seek help for psychological complaints, and extra attention on the part of care professionals for the psychological health of older persons who are already frail is therefore called for. An additional problem is that older persons do not always report their psychological complaints clearly, often describing only the physical symptoms that accompany depression or anxiety, such as pain or tiredness, or saying that they no longer have any enthusiasm for anything. This is often treated by doctors as a somatic complaint, so that depression or anxiety is not recognised. Recognising and treating depression and anxiety symptoms in frail older persons could improve their quality of life considerably. In addition, depression and anxiety are too often still regarded as simply a part of ageing. There is also an impression that it is not possible to treat older persons adequately, whereas there are in fact several evidence-based treatments for older persons, such as problem solving therapy and the life review method. These are often short-term treatments which could be very easily provided in the primary care system, and thus close to older persons’ home setting. Loneliness in older persons is a major problem and is relatively common among those who are psychologically frail. There is an important role for local social policy and the Social Support Act (Wmo) in preventing social isolation and loneliness (see chapter 12). Owing to the comorbidity with other psychological complaints such as depression, however, there is also a task for care professionals from the primary and secondary health care system. Treatment of depression ought to go hand-in-hand with measures to help lift people from their social isolation and eliminate feelings of loneliness. Around 30% of frail older persons report problems with memory. These complaints may be associated with age or with poor physical and mental health. The memory problems sometimes disappear when the psychological complaints are eliminated. However, if there is no clear relationship with depression, it may be useful to encourage people to keep their brains in good condition by using them well and frequently, by taking sufficient exercise and by eating a healthy diet. The maxim ‘use it or lose it’ also appears to apply to the brain, although not all studies are equally clear on this point. However, problems with memory can be a first sign of dementia. Dementia is still not readily treatable, but the associated behavioural and psychological problems are. Early recognition of beginning dementia allows psychosocial intervention to begin early, and this can have a positive effect on the course of the disease (Gauthier et al. 2006). Early diagnosis can also be important for the patient and those around them, so that the course of the disease can be anticipated and there is an explanation for the cognitive and behavioural problems that will arise as time goes by. Many older persons lose control over their lives as their health deteriorates. This has consequences for their mental well-being and quality of life. Having less control exacerbates feelings of helplessness and makes people even more dependent on others. Psychosocial interventions are available which can help older persons to retain control over their lives even though they are becoming increasingly dependent on help from others. One such intervention is the Chronic Disease Self-Management Program, a method developed especially to enable frail older persons to learn to regain control over their own lives despite their deteriorating health (Lorig 1996). Recent research on the effec113


tiveness of this initiative has shown that people’s control over their lives improved in the short term, and that the effect lasted for at least six months, being particularly beneficial for people with a lower education level. The intervention also had a positive impact on the subjective quality of life of the person concerned in both the short and long term (Jonker et al. 2009). 8.7 Summary Roughly a quarter of people in the Netherlands aged 65 years and over are psychologically frail. Usually they have problems with their memory, but feeling down (around 22%) or helpless (around 17%) are also fairly common. Women are more often psychologically frail than men, and most people appear to become psychologically frail between the ages of 65 and 85 years. People who have been widowed and people with two or more chronic diseases or functional disabilities are most often found to be psychologically frail. A substantial proportion of the group who are were persistently psychologically frail throughout the study period suffer from depression and anxiety symptoms to such a degree as to suggest the presence of an anxiety and/or depressive disorder. Psychological frailty is also often accompanied by loneliness. There is a strong correlation between psychological and physical frailty and a slightly weaker correlation between psychological and social frailty. People who are psychologically frail are more likely to be admitted to a care or nursing home and are more likely to die. People who are temporarily psychologically frail, in particular, have a very strong chance of dying. Notes 1 The biggest group consists of people who were not psychologically frail during the entire six-year period (persistently non-frail). This group contained 458 individuals (41.6%). The second group comprises people who were frail in 1998 or 2001, but not in the subsequent observation(s) (temporarily frail); this group numbered 90 persons (8.2%). The third group consists of 123 persons (11.2%) who were initially not psychologically frail but who became frail during the course of the study. A small fourth group of 42 persons (3.8%) were psychologically frail at all three observation moments (persistently frail). The fifth group consists of people who were not psychologically frail between 1998 and 2001 and who died between 2001 and 2005 (death after non-frail). This group numbered 238 individuals (21.7%). The sixth group, finally, consists of people who died between 2001 and 2005 after having become psychologically frail (death after frail). 2 This conclusion is based on data from the first observation in 1998/1999. 3 This section first looked at how many people with or without psychological frailty were admitted to a care or nursing home. In assessing psychological frailty, the period between 1998 and 2001 was taken as a basis; for admission to an institution, the study looked at the four years thereafter. 4 The small number of people admitted between 2001/2002 and 2005/2006 (n = 29) plays a role in the statistical significance of the relationships.

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5 Predicting the likelihood of death requires a different analysis than predicting the chance of admission to a care or nursing home, because validated data on mortality are available in the l a sa database only until 1 September 2007. This is too soon after the observation in 2005/2006 to see the trend in deaths during the study period, and it would require respondents to remain alive until 2005. It was therefore decided to look at the course of psychological frailty between 1998 and 2001 in relation to the chance of dying within three years after the 2001 observation. A maximum term of three years after the 2001 observation was chosen to ensure that sufficient respondents had died to permit a multivariate analysis. Only four groups were distinguished in the analysis: not frail, temporarily frail (frail in 1998, not in 2001), became frail (not frail in 1998, frail in 2001) and persistently frail.

115

Willem Swart (aged 94 years)

will only feel frail when death is approaching. It’s sometimes ‘ Ihard that you have fewer contacts then in the past. I used to have lots of friends and joined in everything. Lots of them are dead now, I’ve outlived them all. Not having many contacts might also make you a bit more frail, I suppose.

‘

s o ci a l fr a ilt y

9 Social frailty Marjolein Broese van Groenou 9.1 What is social frailty? Social frailty appears to be of a different order from physical and psychological frailty. After all, it does not refer to the capacities of the individual themselves, but the relationship between the individual and his or her social setting. Social frailty refers to deficits in social relationships: the lack of a partner or trusted confidant, lack of support, low participation in social networks such as family, neighbourhood and organisations, potentially resulting in a degree of experienced loneliness. In other words, someone is socially frail if they have too few people to whom they can turn in difficult times or if they receive too little support from those around them. A partner is of particular importance for someone’s social frailty, and lack of a partner is the strongest predictor of loneliness: people living alone have smaller social networks and participate less in social activities; they also receive less support from members of their network than people with a partner (Van Tilburg & De Jong Gierveld 2007). People who are alone, have few contacts and/or lack support have more difficulty in coping with traumatic life events. If such an event affects their social network, for example if they lose their partner through divorce or death, this could bring on or exacerbate social frailty. Social frailty means not participating in social networks, or not participating sufficiently, and experiencing a loss of contacts and support. Social frailty plays a role in government policy in several ways. First, within the Exceptional Medical Expenses Act (aw bz), the lack of informal care for older persons with a high care need leads to the use of professional home care services and temporary or permanent admission to a care or nursing home. Second, social participation (‘taking part’) is one of the objectives of the Social Support Act (Wmo) (see www.rijksoverheid.nl/onderwerpen, in Dutch). The idea is that every citizen should be able to participate in Dutch society, even where they have physical or mental disabilities. The introduction of the Wmo in 2007 made local authorities responsible for promoting the independence and social participation of people with disabilities. Recent research suggests that individual support provided via the Wmo does indeed considerably improve the independence of frail older persons (see the findings of Anna Maria Marangos and Mirjam de Klerk in chapter 12 of this report), which in turn has a favourable effect on the maintenance of their social contacts. In addition, the Act charges local authorities with the task of promoting social cohesion and liveability and supporting frail older persons. Some years ago the Ministry of Health, Welfare and Sport (v ws), in collaboration with the then Ministry of Housing, Spatial Planning and the Environment (v rom), launched the initiative ‘Better (at) home in the neighbourhood’ (‘Beter (t)huis in de buurt’), which sets participation in their own residential setting by people with disabilities as a key objective (v rom/v ws 2007). Thirdly, in addition to participation in social networks, preventing loneliness is an important government 117


objective (r mo 1997) (loneliness is defined as an experienced lack of contacts and support; see Van Tilburg & De Jong Gierveld 2007). At local level, innumerable projects have been set up to promote social participation by older persons and prevent loneliness (Fokkema & Stevens 2007). These projects are targeted mainly at people in the very oldest age groups, people living alone and people who are housebound because of physical or cognitive disabilities. Policymakers prefer to talk about participation by frail older persons rather than about social frailty, but this seems to be partly a question of semantics: preventing social isolation and loneliness in older persons is an important goal for national and local government. We know from the literature that there is a relationship between social factors and health (George 1995). This relationship manifests itself in two ways. First, social integration (marriage, family relationships, friendships, church and civic communities, volunteering) is good for the health of the individuals concerned (Berkman et al. 2000). These social relationships make people feel safe and secure in a familiar setting and assured that they will receive support in times of need. Social integration prevents health problems, leads to more rapid recovery where health problems do occur, and extends life (George 1995; Penninx et al. 1999; Berkman et al. 2000). The more social relationships someone has, the fewer health problems they will suffer. This suggests that the onset of social frailty can lead to the onset or exacerbation of health problems. This in turn means that those who lose a partner or who for some reason receive less support from others or have less frequent contact with people from their network could be at risk of developing physical or psychological frailty. People can literally become sick of loneliness, although that sickness will more often take the form of depression than, say, a heart attack. Conversely, good health is a precondition for maintaining contacts. It has been demonstrated that health problems lead to reduced contact with friends, acquaintances and other contacts within organisations, resulting in smaller social networks (Van Tilburg & Broese van Groenou 2002; Aartsen et al. 2004). Physical disabilities impede mobility and therefore pose an obstacle to maintaining contacts which require transport or proximity. Cognitive disabilities lead to a reduction in all sorts of contacts, including with close family members, neighbours and children. Psychological disorders also impede social participation and social contacts: people with depressive disorders have smaller networks and receive less support from others (Kwekkeboom & Van Weert 2008). These findings show that the development of a physical, cognitive or psychological disorder can lead to deficits in social relationships, and thus to social frailty. The causality in this relationship is not entirely clear. During a person’s life course, there will be a constant interaction between social, physical and psychological factors (Cornwell 2009; Ertel et al. 2009). The social network that someone has built up during their life can to a greater or lesser extent compensate for frailty in old age. For example, persons with a large and varied network (mainly married couples, people with children and those who practise religion) have more potential providers of support than people with a small network (Broese van Groenou & Van Tilburg 2007). However, if health problems mean that someone becomes less mobile or communicates less well with their network 118


members, the network will shrink and relationships with non-relatives, in particular, will disappear. For example, someone who has a large network at the age of 65 can still run the risk of social isolation at the age of 80 due to health problems. On the other hand, having a small social network can also accelerate the development of physical or psychological frailty; people who are ill and have a small network tend to die earlier, possibly because of a lack of support when traumatic life events occur. In short, the causality is difficult to demonstrate and will not be discussed further in this report. We will however look at the relationship between the three domains of frailty and investigate to what extent the different courses of social frailty also display elements of physical and psychological frailty. In this chapter we follow the structure of chapters 7 and 8 and investigate the characteristics, course and adverse health outcomes of social frailty on the basis of data drawn from the Longitudinal Aging Study Amsterdam (l a sa). The research questions addressed are as follows: – How many older persons are socially frail? How many people become more or less socially frail over time and what characteristics do they have? – How is social frailty related to the other forms of frailty (physical and psychological)? – How is the course of social frailty related to admission to an institution and to death? 9.2 Course of social frailty In this section we explore how often social frailty occurs among older persons aged over 65 years. In the Tilburg Frailty Indicator (t fi), social frailty is measured on the basis of three criteria: living alone, lack of contacts and lack of support. If someone meets at least two of these three criteria, they are classed as socially frail. During a study period spanning seven years the rate of social frailty in the population who were aged 65 years at the start of the study and 72 years at the end increased from a fifth to almost a quarter (table 9.1). If we look at the three criteria, we see that ‘living alone’ is the most common factor (40%-45%), followed by lack of contacts (around 25%) and lack of people to fall back on (around 15%) (table 9.1). At all observation moments, roughly a third of the participants displayed one of the three characteristics of social frailty; 17-19% exhibited two characteristics; and only 3-4% met all three criteria for social frailty. Older persons who are socially frail will thus often live alone and experience a lack of contacts and/or social support.

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Table 9.1 Course of social frailty in older persons (in percentages and ages)a

living alone lack of contacts lack of support number of characteristics none one two three % socially frailb average age (sd)c minimum/maximum age (n)

1998/1999

2001/2002

2005/2006

39.8 25.2 16.7

42.2 24.4 15.2

45.2 25.9 14.8

43.6 35.3 16.9 4.2 21.1 73.8 (6.2) 65.0 / 91.6 1268

44.2 33.7 18.6 3.6 22.1 76.3 (5.9) 67.7 / 94.3 1069

40.3 37.5 18.8 3.4 23.3 79.4 (5.4) 72.0 / 98.6 602

a Weighted by sex and age for the population aged over 65 in 1998/1999, over 68 in 2001/2002 and over 72 in 2005/2006. b Persons with two or more characteristics of social frailty. Sd = standard deviation. Source: vu (l a sa’98-’06)

The course of social frailty was also examined in a select group of respondents who took part in the study at all three observation moments. In this group, the percentage with social frailty increased over the seven-year period from 17% to 23.4%. The percentage of older persons living alone increased from 35% to 47%, the biggest increase. The experienced lack of contacts increased to a lesser extent, from around 22% in 1998/1999 to approximately 26% in 2005/2006. Lack of support remained fairly stable over this period. In 2005/2006, these older persons were just under 80 years old on average, and 62% reported at least one characteristic of social frailty; just under 20% reported two characteristics, and only 3.7% reported all three characteristics. We may conclude that social frailty in this group of older persons is primarily a result of a transition to living alone, very probably due to the loss of their partner. The increase in the lack of contacts or support over time is less marked. 9.3 Six courses of social frailty It cannot be seen from table 9.1 which older persons develop social frailty during the observation period and which older persons are socially non-frail throughout the period. In order to map out the course of social frailty during the observation period, six different groups were constructed (see also chapter 6 for a description of these groups). The first group remained socially non-frail during the period 1998-2005 (roughly 44%). Only 7% were temporarily frail, which means that they were socially frail in 1998 and/or 2001 but had recovered in 2005. The third group consists of persons who were not frail in 1998 but were frail in 2001 and/or 2005; this group make up 9.2% of the sample. Then 120


there is a small group (5.2%) who were socially frail throughout the entire study period. Roughly 22% of the sample died before becoming socially frail. Around 12% died after having been socially frail. Figure 9.1 shows the average social frailty of these six groups over time, using a score of between 0 and 1. Figure 9.1 Six courses of social frailty at three observation moments (average item score)a

average item score

0.8


0.7

temporarily frail

0.6


0.5


0.4

death after frail

0.3 0.2 0.1 0.0 1998/1999

2001/2002

2005/2006


Women turn out to be in the frail groups more often than men (temporarily frail, became frail and persistently frail), whereas men are found more often than women in the group who die before having been socially frail. These gender differences can on the one hand be interpreted in the light of the fact that women more often lose a partner due to death than men, and on the other the fact that men more often die following an acute disease, whereas women more often develop chronic diseases which do not prove fatal. There is a clear difference in social frailty by age. Below the age of 75 years, the onset or presence of social frailty is much less likely. The percentage who die before having been socially frail is relatively high in this age group. From age 75 onwards, social frailty is relatively common, and from the age of 85 years death occurs relatively often, so that most people aged 85 years and over die after having been socially frail. These data show clearly that social frailty increases sharply with age. Education level makes no difference to the course of social frailty. People who are married, people with children, people with a large social network and members of the Catholic religion relatively often fall into the group who were not socially frail between 1998 and 2005. The same applies for those who were members of a club or association or who did voluntary work. By contrast, widows and widowers relatively 121


often fall into the group who became frail or were persistently socially frail throughout the study period. Divorced older persons are relatively often temporarily frail; it may be that they temporarily miss support or contacts following the loss of their partner, but that this feeling disappears once they begin living with somebody again. Those with a small network relatively often die after having been socially frail, and the same applies for those who are not members of a church community and who do not do voluntary work. The lack of various types of relationships is found to be associated with social frailty (defined as living alone and lack of support or contacts). It is understandable that people who have lost their partner and who also have few other social relationships will miss these contacts and/or this support. Those who are members of a church community less often appear to be frail; the lack of a partner appears to be compensated for by contacts and support within the church. Participation in broader associations (social network, church and volunteering) appears to be able to prevent social frailty. Older persons with one chronic disease more often become socially frail than older persons without diseases, while those with two or more chronic diseases more often die, having been socially frail or otherwise. People with functional disabilities are also socially frail and die relatively often, either having been socially frail or otherwise (see § 9.5). 9.4 Relationship between course of social frailty and physical and psychological frailty in the longer term The reciprocal relationship between social frailty and physical and psychological frailty was mentioned in the introduction. The literature shows that the onset of social frailty can lead to physical and psychological frailty, but there is more evidence for a relationship that operates in the opposite direction, whereby the development of physical and psychological health problems leads to social frailty. Social frailty is less common among men than women, and also less common among persons aged between 65 and 84 years and those aged over 85 (this is supported by multivariate analyses). Education pays no role. If we look at the degree of physical frailty, we find a positive correlation with social frailty. If we also take into account the degree of psychological frailty of these persons, however, the correlation with physical frailty weakens again. There is a strong positive relationship between psychological frailty and social frailty. The greater the psychological and physical frailty, the greater the social frailty. This relationship is present regardless of the sex and age of those affected. To illustrate the relationship between the different domains of frailty, figures 9.2 and 9.3 show the degree of physical and psychological frailty for the different courses of social frailty.

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Figure 9.2 Physical frailty by six different courses of social frailty (average item score)a 0.45

not frail

death after frail

0.40

temporarily frail

0.35

became frail

0.30

persistently frail

0.25

death after non-frail death after frail

0.20 0.15 0.10 0.05 0.00 1998/1999

2001/2002

2005/2006


Figure 9.2 shows that physical frailty increases over time in every group, and that this is not closely related to the development in social frailty. This explains the relatively weak correlation between physical and social frailty. In chapter 7 we saw that there are v irtually no differences in social frailty between the different courses of physical frailty. In figure 7.2b we saw that an increase in social frailty occurs in older persons who become physically frail, but also in those who do not. The weak correlation suggests that the two trends can occur independently of each other.

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Figure 9.3 Psychological frailty by six different courses of social frailty (average item score)a

frailty item score

0.40

not frail

0.35

temporarily frail

0.30


0.25


0.20

death after frail

0.15 0.10 0.05 0.00 1998/1999

2001/2002

2005/2006


It can be seen from figure 9.3 that the increase in psychological frailty is fairly marked in the group who became socially frail during the study period, the group who were temporarily socially frail and the groups who died. The upward trend in psychological frailty is weaker in the group who were not socially frail and among those who were persistently socially frail. In chapter 8, the reverse relationship was investigated, i.e. the degree of social frailty for a given course in psychological frailty. In figure 8.3 we saw that social frailty increased above all in the group who became psychologically frail and the group who were persistently psychologically frail. This suggests that the trends in social and psychological frailty rise in parallel. It is not clear whether social frailty or psychological frailty comes first; it is likely that they influence each other. We may conclude that the development of social frailty is associated more with the development of psychological than physical frailty. The results of our study confirm the picture that loss of a partner and/or of contacts or support mainly leads to psychological problems, such as depression and feelings of loneliness, and not necessarily to physical complaints. 9.5 Does the course of social frailty predict admission to a care or nursing home and death? Under the Exceptional Medical Expenses Act (aw bz), admission to a care or nursing home not only requires a physical or cognitive indication, but also a social indication. Single persons and persons not receiving informal care have a relatively strong chance 124


of being admitted to an institution if they develop health problems (Den Draak 2010). In this section we explore how much the development or prevention of social frailty contributes to admission to a care or nursing home. Admission can of course only be predicted for those who were alive throughout the observation period.1 Figure 9.4 shows the percentage of older persons admitted to a care or nursing home for the different courses of social frailty. A relatively high percentage of older persons who became socially frail during the study period were admitted to a care or nursing home in 2005 (14.6%). Among those who recovered from social frailty and those who remained frail throughout the period, the figure is around 11%. It thus appears that a transition in the social determinants of frailty (being left alone, losing contact and support) could be a predictor of care or nursing home admission. Figure 9.4 Share of admissions to a care or nursing home for four coursesa of social frailty, 2005/2006 (in percentages) 16 14 12 10 8 6 4 2 0 not frail

temporarily frail

became frail

persistently frail


To assess the relative probability of admission to a care or nursing home for the four different courses of social frailty, a logistic regression analysis was performed. Initially only social frailty was included in the analysis; subsequently, background characteristics (age, sex and education level) and the course of psychological and physical frailty were added to the model. The results of the unadjusted analyses suggest that older persons who became frail were twice as likely to be admitted to a care or nursing home in 2005 as older persons who were not frail. This probability reduces after correction for background characteristics, however, and it is mainly the high age of those who became frail which causes the effect 125


of social frailty on care or nursing home admission to diminish. After addition of the course of physical and psychological frailty as variables, the course of social frailty was found no longer to influence care or nursing home admission. Being or becoming physically and/or psychologically frail are thus more important predictors of care or nursing home admission (see chapters 7 and 8). We may conclude that becoming socially frail influences care or nursing home admission, but that this is largely because it is mainly very elderly persons who are admitted. It has been known for some time that social integration contributes to longer life. In section 9.3, however, we saw that the relationship between physical frailty and social frailty is not a strong one. The research also suggests a fairly weak correlation between social relationships and physical health (Aartsen et al. 2004). In this section we examine the extent to which the course of social frailty contributes to a greater risk of death,2 taking account of the course of physical and psychological frailty. Figure 9.5 shows that older persons who died within three years after the observation in 2001 differ from each other little in the course of their social frailty. Around 16% of older persons who recovered from social frailty died within three years of the observation, compared with approximately 18% of those who were persistently socially frail. Among those who became frail the percentage is around 14%. The differences are thus small, though are significant.3 A logistic regression analysis was also performed to determine the relative probability of dying within three years after the last observation moment. Those who were and remained frail between 1998 and 2001 were found to be around one and a half times more likely to die within three years than those who were not socially frail during this period.4 If we correct for the background characteristics age, sex and education level and for the course of physical and psychological frailty, we find that the course of social frailty no longer influences the chance of death. It is mainly advanced age and becoming or remaining physically frail which increase the chance of death (not shown in figure, see also chapter 8). The chance of dying within three years is slightly greater for those who are socially frail, but this is explained mainly by the fact that these are also the oldest age group and the most physically frail.

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Figure 9.5 Share of deaths in four different coursesa of social frailty within three years after the observation moment 2001/2002 (in percentages) 20 18 16 14 12 10 8 6 4 2 0 not frail

temporarily frail

became frail

persistently frail


9.6 Recommendations for research and policy This chapter makes clear that social frailty, defined as living alone and lacking contacts or support, does not adequately predict whether someone will become physically frail, be admitted to a care or nursing home or will die. It may be that the criterion ‘living alone’ is not specific enough. The number of persons aged over 65 living alone is increasing, and living alone is therefore becoming less unusual. Many older persons who live alone are still able to maintain a social network or call on neighbours and nearby family members when needed. The number of contacts with other people per week may be a better indicator for the degree of objective social isolation than simply living alone. The relationship between social and physical frailty could also strengthen if other indicators of social frailty were used. Research has shown that health problems can lead to shrinkage of personal networks and withdrawal from social contacts (Ertel et al. 2009). In interviews, older persons with health problems also cited social frailty in particular as a potential major consequence of physical disabilities (see chapter 2 of this report). The relationship between physical and social frailty may thus be stronger than suggested in this chapter; further research on the different indicators of objective and subjective social frailty could provide more clarity here.

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We may conclude that social frailty appears to influence the chance of admission to an institution or death less than physical and psychological frailty. The implication for measuring frailty is that social frailty items should be included in the measure, but should not be given the greatest weight in assessing frailty. Consideration could even be given to starting from a minimum criterion for physical and psychological frailty when determining the frailty of an individual, supplemented by social frailty. On the other hand, it is possible to identify socially frail older persons using the t fi. Social frailty is however important for older persons’ well-being. Policymakers are committed to ensuring that people continue participating in society for as long as possible and to preventing loneliness in the frail older population. Given the positive correlation between social and psychological frailty, this commitment appears justified. It would be useful to map out the social contacts of older persons in order to obtain a good picture of their social frailty. Their marital status, the size of their social network, their association with the church and their activities as volunteers should all be taken into account here. It is primarily those who do not participate in these networks who die after having been socially frail, or who are persistently socially frail (without dying). When implementing the Social Support Act (Wmo), more attention could be devoted to providing support in the social sphere. At present, older persons are mainly supported with domestic help and transport, both of which boost their independence (see chapter 12), but which increase their social contacts only indirectly. The most elderly persons without a partner and with a low education level (and possibly also a low income) are the ones who are relatively often socially frail and therefore constitute an important target group for local authorities in implementing the Wmo. The results imply that implementation of the Exceptional Medical Expenses Act (aw bz) could apply social frailty as a supplementary criterion, in addition to the criteria of physical and/or psychological frailty. Older persons with a high care need often receive longterm help at home from both informal and formal care providers (De Klerk 2004). The step to admission to a care or nursing home is generally only taken when the available informal carers are no longer able to provide the necessary care, or where no informal carers are available (Den Draak 2010). The t fi and the assessment of social frailty appear to be more applicable in the implementation of the Wmo than the aw bz. The t fi enables local authorities to determine at an early stage whether someone is socially frail. Providing support through the Social Support Act (Wmo), especially aimed at combating loneliness, can help prevent social and psychological frailty, even where chronic diseases and physical frailty are present. 9.7 Summary Four research questions are answered in this chapter. First, the chapter describes how many older persons are socially frail; this is found to be the case for roughly a quarter of the older population, in the sense that they live alone and experience deficits in contacts and support. Perceived lack of support is the least common characteristic among socially frail older persons.

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The second question was concerned with the course of social frailty. During a sevenyear study period, 43% of older persons reported no social frailty and around 22% died without having been socially frail. Only a minority of older persons are therefore socially frail, either temporarily or through becoming or being persistently frail or as a precursor to death. People who become socially frail start off by finding themselves living alone and then begin missing contacts. Those who participate little in social networks relatively often are or become socially frail, in some cases followed by death. People who are widowed or divorced, people with small networks, non-religious people and those who do not do voluntary work, in particular, are or become socially frail relatively frequently. This suggests that older persons who live alone but participate in all kinds of social activities (own social network, church, volunteering) are at less risk of becoming socially frail. It is plausible that having lots of diverse social contacts also prevents (subjective) lack of contacts and support. The third research question concerns the relationship with physical and psychological frailty. It emerges that there is only a weak correlation between social frailty and physical frailty. This implies that people will not necessarily develop physical problems if they are socially frail, even though the results in chapter 7 suggest that the development of physical problems can increase social frailty. The relationship between social frailty and psychological frailty is stronger. This can be explained by the fact that social frailty was measured in this study using the criteria living alone and subjective indicators for social isolation. Living alone (which is very common due to the death of a partner) does not itself make people physically ill, but does make them feel gloomy and lonely, and they have fewer people in their immediate setting to help deal with difficult circumstances. Finally, we looked in this chapter at the extent to which the course of social frailty is related to admission to a care or nursing home and to death. The conclusion is that social frailty does not lead directly to a greater probability of admission to a care or nursing home; it is primarily the high age of those who are socially frail combined with psychological or physical frailty which explains their admission to a home. This suggests that social frailty should carry less weight in assessing someone for admission to a care or nursing home. In other words, there must always be a high care need due to physical and/or psychological disorders before admission to a care or nursing home is deemed necessary. The lack of a social safety net could then make such an admission more likely. In research among residents of care and nursing homes, only 7% report that loss of their partner or their social network was the immediate reason for their admission to the home (Den Draak 2010). It is possible that there was already a high care need in this group. Admission to a home purely on the grounds of social frailty is unimaginable in present-day Dutch society. Social frailty also does not increase the chance of death; the effect of social frailty on mortality appears to be mainly indirect and to operate via the fact that those concerned are very elderly and are at increased risk of being psychologically frail.

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Notes 1 In the group who had been admitted to a home at the third observation moment (2005/2006), the course of their frailty in the period 1998-2001 was examined. Four different groups were distinguished: not frail, temporarily frail (frail in 1998, not in 2001), became frail (not frail in 1998, frail in 2001) and persistently frail. 2 Predicting the likelihood of death requires a different analysis than predicting the chance of admission to a care or nursing home, because validated data on mortality are available in the l a sa database only until 1 September 2007. This is too soon after the observation in 2005/2006 to see the trend in deaths during the study period, and it would require respondents to remain alive until 2005. It was therefore decided to look at the course of social frailty between 1998 and 2001 in relation to the chance of dying within three years after the 2001 observation. A maximum term of three years after the 2001 observation was chosen to ensure that sufficient respondents had died to permit a multivariate analysis. Only four groups were distinguished in the analysis: not frail, temporarily frail (frail in 1998, not in 2001), became frail (not frail in 1998, frail in 2001) and persistently frail. 3 The differences are statistically significant: Chi squared = 9.6, p = 0.02. 4 This relative probability is just not statistically significant at the 5% level (odds ratio = 1.76, p = 0.05).

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PART IV Protection against frailty

Jacob Mooiman (aged 100 years)

don’t feel frail at all; I feel in top form. I can still do anything I ‘ Iwant and I do everything myself: walking, washing, making my bed. The nurses sometimes say: ‘We do so little for you!’. I get up every day at 5:30 a.m., drink two glasses of Dutch gin every day and three on a Sunday. I could easily reach 1000 years old.

’

s o cioeconomic s tatus

10 Socioeconomic status Martijn Huisman 10.1 Socioeconomic status and health of older persons People with a lower socioeconomic status are generally less healthy than people with a higher socioeconomic status. There are indications that socioeconomic differences in healthy life expectancy are not much lower in the Netherlands than in other European countries, and in some cases are actually greater (Kunst & Droomers 2009). The fact that Dutch citizens with a low socioeconomic status are unhealthy applies not only for younger and middle-aged adults, but also for the older population (Broese van Groenou et al. 2003; Huisman et al. 2003). Older persons with a low education level or a low income have a higher risk of mortality, being admitted to an institution and developing functional disabilities. These health differences among older persons suggest a systematic, chronic problem for the public health system, and indicate that the highest proportion of all health problems in the Netherlands occurs in groups which are socially and economically underprivileged. In 2008 the Dutch government formulated the policy plan on ‘Socioeconomic Health Differentials’ (seg v). The plan argued that socioeconomic health differentials should be given an important place in the then Coalition Agreement. However, ‘the older population’ very rarely formed a specific target group in the seg v initiatives from the various ministries. If substantial socioeconomic differentials in frailty are found to exist among older persons, greater efforts may need to be made to eliminate and reduce those differentials. Socioeconomic status is the position someone occupies in a social hierarchy. The higher their socioeconomic status, the more influence they can exercise over their own lives and those of others. This influence can be obtained in several ways, for example through a good education (which brings scarce, highly valued jobs with lots of responsibility within reach) or through a high income (giving access to material goods). Socioeconomic status can therefore best be measured using several indicators, in order to obtain the most complete picture possible of an individual’s status. That is the approach taken in this study: we investigate how frailty relates to education, which gives an indication of cognitive and cultural development; with income, to provide an indication of the material situation; and with the socioeconomic status of the residential neighbourhood, which gives an indication of a person’s living environment. There is evidence that socioeconomic status influences health throughout life, and that a low socioeconomic status early in life can partially affect health in later life. As the indications are that the socioeconomic status of their parents has additional predictive value for an individual’s health in older age, in addition to their own socioeconomic status (Broese van Groenou et al. 2003), we also investigate possible correlations between frailty in older persons and the education level of their father and mother. 133


In this chapter we examine whether there is a relationship between socioeconomic status and frailty in older Dutch men and women. Research has been carried out on this in the past, and has been widely published in the scientific literature. Without exception, those studies show that a high socioeconomic status offers protection against becoming and remaining frail (Strawbridge 1998; Fried et al. 2001; Leigh & Fries 2002; Lang et al. 2009; Syddall et al. 2010; Szanton et al. 2010; Woo et al. 2010). The evidence for a relationship between socioeconomic status and frailty appears robust, because the studies were carried out in different countries and investigated different socioeconomic indicators. The indicators studied to date include individual characteristics such as income, education level, access to a car, total value of material possessions (wealth) and home ownership (Strawbridge 1998; Fried et al. 2001; Leigh & Fries 2002; Syddall et al. 2010; Szanton et al. 2010; Woo et al. 2010). Research on the relationship between the socioeconomic status of the neighbourhood and the frailty of residents is scarce, though an association has also been demonstrated for neighbourhood deprivation (Lang et al. 2009). What has not been studied to date is whether there is a relationship between indicators of socioeconomic status and the course of frailty. Section 10.2 devotes some attention to this question. No in-depth research has to date been carried out on the explanation of the relationship between socioeconomic status and frailty. There are however some ideas on this point. Which explanations are put forward depends greatly on the type of frailty being studied: physical, psychological or social frailty. In this report, social frailty is measured primarily by the presence of social support and of a partner. It is possible that groups with a lower socioeconomic status experience more social frailty because their networks shrink more rapidly as they age. The causes of both physical and psychological frailty must be sought in physical ageing processes: those processes cause molecular damage, which in turn leads to health problems and other characteristics of ageing such as physical and psychological frailty. To understand why older persons with a weaker socioeconomic profile may be more frail, therefore, it is important to examine how frailty develops during the life course and to obtain as complete a picture as possible of exposure to factors that (adversely) affect the physiology. These will be largely lifestyle factors, and exposure to acute and chronic stress throughout the life course. These factors are known to be related to socioeconomic status and to have a major influence on human physiology. Exposure to risk factors which play a role in later life has also been found to influence socioeconomic differentials in health among older persons (Koster et al. 2006). Data from the Longitudinal Aging Study Amsterdam (l a sa)1 were used to answer the following research questions: – How often does frailty occur in Dutch older persons with a different socioeconomic status? – Are there socioeconomic differences in the course of frailty among Dutch older persons? – Are there socioeconomic differences in admissions to a care or nursing home and mortality?

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10.2 Socioeconomic differences in frailty It is mainly older persons’ own socioeconomic status (and not that of their parents) which is related to the occurrence of frailty (table 10.1). There is a relationship between frailty and the individual’s own socioeconomic status, with the rate of frailty rising with falling socioeconomic status. This applies for both education and income. The education of the parents is generally found (contrary to what might be expected) not to be significantly related to the occurrence of frailty in older persons.2 We find no convincing evidence for a strong correlation between neighbourhood status and frailty, though there is a statistically significant difference in the percentage of frail persons between the groups with differing neighbourhood status in 2001/2002; this difference is not found in the other observation years, however. This lack of a statistically significant relationship in all observation years is probably due to the small difference between the group with a medium to high neighbourhood status and the group with a high neighbourhood status. In all years, it is the group with the lowest neighbourhood status which contains the highest percentage of frail persons. Table 10.1 Occurrence of frailty in older persons, by socioeconomic status (in percentages)    

% frail 1998/1999 (n = 1042)a

% frail 2001/2002 (n = 867)a

% frail 2005/2006 (n = 674)a

28.5

34.4

35.7

20.2 11.1 **

26.0 20.0 **

26.3 13.7 **

education primary or no education secondary education (junior or senior secondary vocational education, general secondary education) tertiary education (universe of applied sciences, university p-valueb household income 1998/1999 ≤ 909 euros per month 910-1364 euros per month ≥ 1365 euros per month p-valueb neighbourhood statusc low average high p-valueb

42.5 17.3 14.0 **

50.0 26.1 20.2 **

44.1 27.4 21.1 **

26.5 22.0 17.2 *

30.5 26.1 27.8 0.47

34.1 24.2 25.4 0.07

education father primary or no education secondary education tertiary education p-valueb

22.6 17.9 21.4 0.27

30.1 21.2 28.6 *

28.2 26.5 26.3 0.69

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Table 10.1 (continued)     education mother primary or no education secondary education tertiary education p-valueb

% frail 1998/1999 (n = 1042)a

% frail 2001/2002 (n = 867)a

% frail 2005/2006 (n = 674)a

21.7 20.0 17.6 0.59

28.8 20.7 22.2 0.11

27.9 25.0 28.6 0.77

a (n) is the unweighted sample size; the percentages in the tables are weighted to make them representative for the entire older population. b Significance: * p < 0.05; ** p < 0.01. c The socioeconomic status of the neighbourhood was measured using various indicators: average income per household; percentage of households with a low income; percentage of people without paid work; and percentage of households with a low average education level. The socioeconomic status scores were distributed in tertiles. Source: vu (l a sa’98-’06)

If we look at the different courses of frailty (see chapter 6), we find that they vary with socioeconomic status, especially education, income, neighbourhood status and education of mother. It is striking that those who were persistently non-frail throughout the study period are found mainly in the higher socioeconomic groups. Having a high individual socioeconomic status and a high neighbourhood status thus offers protection against frailty in ageing. The relatively high share of participants in the lowest income group who died after having been frail is also striking (32.5% versus 14.5% in the middle and 14.6% in the highest income segments). 10.3 Socioeconomic differences in care or nursing home admission and death There is a relationship between education, income and the course of frailty on the one hand and admission to a care or nursing home on the other (table 10.2). Lower-educated older persons are more than twice as likely to be admitted to a home as their counterparts with a higher education level. After including income in the analytical model, this probability declines, but is still one and a half times as great. After including the course of frailty in the model, this relationship no longer changes. These results suggest that education is related to admission for both men and women, and that this relationship can be partly explained by the fact that those with a lower education level more often have a lower income. The results for the variable ‘education’ are however not statistically significant, so that we cannot say with certainty that the relationships we found apply for the Dutch population as a whole.

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Table 10.2 Relationship between socioeconomic status and admission to a care or nursing home, before and after controlling for course of frailty (in odds ratios)a controlled for sex and age odds ratio education primary or no education secondary education tertiary education (ref.) household income ≤ 909 euros per month 910-1364 euros per month ≥ 1364 euros per month (ref.) course of frailty persistently non-frail (ref.) temporarily frail became frail persistently frail

2.31 1.09 –

+ income odds ratio

+ course of frailty odds ratio

1.53 0.87 –

1.50 0.81 –

2.60* 1.36 –

2.44* 1.38 – – 0.27 3.20** 2.10

a Significance: * p < 0.05; ** p < 0.01. The influence of interactions between the variables ‘education’ and ‘course of frailty’ and between the variables ‘income’ and ‘course of frailty’ on the outcome measure ‘admission to a care home’ were tested and found not to be statistically significant. Source: vu (l a sa’98-’06)

People on the lowest incomes are found to be more than twice as likely to be admitted to a home as those on the highest incomes. The difference between the middle and highest income groups was found not to be statistically significant (table 10.2). The correlation between low income and admission to a care home weakens after adding the variable ‘course of frailty’ to the analytical model, but only slightly. The relationship between a low income and admission to a care home is found to be statistically significant, independent of age, sex, education and course of frailty. We may conclude that course of frailty is a predictor of care home admission independently of individual socioeconomic status. The group who become frail have a particularly high probability of being admitted. This implies that the relationship between frailty and care home admission cannot be explained exclusively from the fact that frail persons more often have a lower socioeconomic status.

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Table 10.3 Relationship between socioeconomic status and death within three years after 2001/2002, before and after controlling for course of frailty (in odds ratios)a controlled for sex and age odds ratio education primary or no education secondary education tertiary education (ref.) household income ≤ 909 euros per month 910-1364 euros per month ≥ 1365 euros per month (ref.) course of frailty persistently non-frail (ref.) temporarily frail became frail persistently frail

1,16 0,64 –

+ income odds ratio

+ course of frailty odds ratio

1,09 0,63 –

1,15 0,66 –

1,21 0,98 –

0,92 0,91 – – 1,18 2,31** 3,92**

a Significance: * p < 0.05; ** p < 0.01. The influence of interactions between the variables ‘education’ and ‘course of frailty’ and between the variables ‘income’ and ‘course of frailty’ on the outcome measure ‘admission to a care home’ were tested and found not to be statistically significant. Source: vu (l a sa’98-’06)

We also estimated the relationships for men and women separately, because there are many differences between the sexes as regards both education and income and frailty and the probability of care home admission and death.3 The sex-specific results partially correspond with the results we found for the group as a whole. What is striking when we compare the results for men and women is the relative strength of the relationship between income and care home admission for men. Another difference is the strong relationship between course of frailty and care home admission for men compared with the substantially weaker relationship among women (which is also not statistically significant).4 We find virtually no relationships between education and income level and death (table 10.3). The predictive value of the course of frailty for mortality is found to be independent of socioeconomic status. The fact that the groups who became frail or who were persistently frail throughout the study period have a greater probability of death is therefore not due to the fact that they have a low socioeconomic status more often than the group who are not frail. 5 The relationship between education and income on the one hand and death on the other is different for men and women. In men, there is a positive correlation between income level and probability of early death; there is virtually no correlation between education 138


level and early death, and in fact the correlation is actually weaker among those with a secondary education level than among those with the highest education level. For women, there is a correlation between education and care home admission, and the lowest income group have a smaller probability of being admitted to a care home than the highest income group.6 10.4 Summary There is a relationship between socioeconomic status and the occurrence of frailty in Dutch older persons. It is their own individual socioeconomic status, determined by factors such as education level and household income, which influences their frailty; other indicators of socioeconomic status, such as the education of their father and mother and the status of the neighbourhood where they live, play no role. The course of frailty, by contrast, is influenced not only by the individual’s own socioeconomic status, but also by the neighbourhood status and the education level of their mother. The higher socioeconomic groups experience a stable, non-frail ageing process more often than the lower socioeconomic groups.7 The correlation between income and care home admission is statistically significant. This correlation is largely explained by factors other than the course of frailty. When investigating the relationships between socioeconomic status, frailty and care home admission and death, we also calculated the correlations for men and women separately. We expected to find differences between men and women, because both education and income on the one hand and frailty and the probability of care home admission and death on the other differ considerably between the two sexes, and a number of differences were indeed found to exist. First, the correlation between income and admission to a care or nursing home is a good deal stronger for men than women. Second, the relationship between course of frailty and admission to a care or nursing home is stronger for men than for women. Men who become frail, in particular, are more likely to be admitted to a home. As regards the predictive value of the course of frailty for death, this is found to be independent of socioeconomic status: according to our data, there is also no strong correlation between socioeconomic status and death within three years.8 It is thus not the case that older persons with an unfavourable course of frailty are more likely to die within three years simply because they have a lower socioeconomic status. Conversely, it may be concluded that frailty is an important predictor within all socioeconomic groups.9 Chapter 6 reported on the relationships between health characteristics and frailty. Lifestyle factors such as smoking and a high bmi were found to be clearly related to frailty. Since these factors are also related to socioeconomic status, measures taken to prevent unhealthy lifestyles in groups with a lower socioeconomic status could also prevent or reduce differences in frailty. The recent government policy document ‘Healthy diet, from beginning to end’ (Gezonde voeding, van begin tot eind) states that the government will devote particular attention to the lower socioeconomic groups in its efforts to encourage a healthy diet. Not much is currently known about the dietary patterns of older persons, making it difficult to determine whether and how a healthy lifestyle can be 139


encouraged for this population group. A first step in establishing these dietary patterns has recently been taken by the National Institute for Public Health and the Environment (r i v m), which is investigating the eating habits of older persons with the help of the Food Consumption Survey (Voedingsconsumptiepeiling). Notes 1 In the l a sa study, data were gathered on a large number of socioeconomic indicators. The following indicators are discussed in this chapter: education level, household income, socioeconomic status of the neighbourhood and education level of the father and mother. Education level was divided into three categories: no qualification or only primary education; secondary education (junior and senior, both general and vocational) and higher education (university of applied sciences or university). The same subdivision was applied to the education level of the father and mother. Income was divided into three categories, each representing roughly a third of the respondents: ≤ 909 euros per month, 910-1,364 euros per month and ≥ 1,365 euros per month. The socioeconomic status of the neighbourhood was measured using various indicators: average income per household; percentage of households with a low income; percentage of people without paid work; and percentage of households with a low average education level (this method has been used earlier by the Netherlands Institute for Social Research | scp, see scp 1998). This distribution of the scores for neighbourhood status was divided into tertiles for this study. 2 A significant relationship between the education level of the father and frailty of older persons was demonstrated only for the observation moment 2001/2002. Older persons whose father had a secondary education level (21.2%) were the least frail, and not the older persons whose father had enjoyed a tertiary education (28.6%). 3 This relationship was estimated using a series of logistic regression analyses. First, the relationship was estimated between own education level and the dependent variable (for care or nursing home admission see table 10.2, and for death see table 10.3); in this estimate, we controlled for possible sex and age differences between the educational groups. Household income was then added to the regression model, and finally the course of frailty. The extent to which education level, income and course of frailty are related to care/nursing home admission and death independently of each other can be deduced from the results. The results also enable a conclusion to be drawn on the extent to which any relationship between education level and care/nursing home admission or death can be explained by income and/or course of frailty, and also to what extent any relationship between income and care/nursing home admission or death can be explained by course of frailty. 4 An estimate was made in the analysis of the effects that the interaction between socioeconomic status and course of frailty have on admission to a care or nursing home; however, these effects were found not to be statistically significant and are therefore not included in table 10.2. 5 In these analyses, too, no interaction was observed between socioeconomic status and course of frailty. 6 The observed correlations are not statistically significant. 7 The effect of education is found to be substantial, but not statistically significant. We can therefore not state with certainty that the correlation found between education level and course of frailty applies for the entire Dutch older population. The lack of a statistically significant relationship may be connected to the small absolute number of admissions in the sample. 140


8 No correlation was found between education and income level on the one hand and death on the other. This contrasts with the findings that are generally reported in the international scientific literature (Huisman et al. 2004; Steenland et al. 2004; Shishebor et al. 2006; Martikainen et al. 2008; Chapman et al. 2010). It may be that the period of three years that we applied in our analyses to determine the mortality rates was too short to detect any socioeconomic differences that may have been present. The longer the period, the greater the number of deaths, so that after a longer period of observation it may become clearer how socioeconomic status influences the probability of death. 9 A subdivision by sex was also made when investigating the relationships between socioeconomic status and course of frailty and death. The relationship between education level and income on the one hand and death on the other is different for men and women. For men, the correlation between income level and probability of death is relatively strong, while there is virtually no relationship between education level and death. For women, education level correlates with death, and the lowest income group has a greater probability of dying than the highest income group. These opposing correlations probably explain the lack of relationships in the survey population as a whole. The relationships found for men and women separately are not statistically significant, however, so that we cannot say with certainty that these relationships apply for the Dutch population as a whole.

141

Johanna Oosterbaan (aged 86 years)

was frail when my only child died of cancer when she was 64. ‘ ILuckily, I have three wonderful granddaughters. I was also frail when I had to move out of my house; I had to throw away lots of things, and that’s very difficult emotionally. But I’ve never had any regrets and I now really enjoy life.

’

housing a nd c a r e

11 Housing and care Alice de Boer, Debbie Oudijk and Marjolein Broese van Groenou 11.1 Policy and research Housing and care play an important role in offering protection against the adverse consequences of frailty. The international literature shows that providing housing and care can prevent or delay admission of older persons to a care or nursing home (Gitlin et al. 2001). The literature also shows that moving into a care or nursing home can lead to a deterioration in health (see McKinney & Melby 2002).1 The Dutch government is committed to enabling older persons to continue living independently in the community for as long as possible. Its aim is to ‘help older persons and people with disabilities to (continue to) live in their residential neighbourhood, to receive support and care that is geared to their needs and therefore to continue participating (for longer) in society’ (v rom/v ws 2007).2 Given their greater probability of being admitted to a care institution (see chapters 6 to 9 inclusive), it is important to gain a picture of the frail older population. Notwithstanding this government policy, older persons themselves also have a responsibility here: policy documents on care for older persons place the emphasis on their own responsibility and independence. The principle is that older persons should first seek to resolve their health problems themselves, where necessary with the help of a partner or children (informal care). Publicly funded help financed through the Exceptional Medical Expenses Act (aw bz) (such as admission to a care institution or help with personal care) will only be provided for the least healthy older persons). Housing policy is mainly implemented at local level. Housing associations invest among other things in housing and care facilities and accessible homes for all older persons. However, they also develop specific measures for frail older persons, for example by launching internal projects and initiatives for care networks, though housing associations differ in the efforts they devote to such initiatives. Apart from the government (support funded through the aw bz), responsibility for providing support for frail citizens also lies with local authorities, who are charged with implementing the Social Support Act (Wmo). They liaise with housing associations to decide what is needed in terms of ‘lifetime homes’ and the building of adaptable homes for older persons (De Klerk et al. 2010). Agreements are made on adaptation of existing homes when these are renovated or improved, as well as on the proportion of new rental lifetime homes. A further discussion of the relationship between Wmo provisions and frailty may be found in chapter 12. Research literature on the life situation of older persons often refers to their need for safety. According to the literature, older persons with health problems place greater demands on the safety of their residential setting and neighbourhood, but also of their home. Safety therefore plays a major role in the desire to move home (Kingston

143


et al. 2001). The safety of the residential setting is part of local safety policy and urban policy, while safety of the home falls under the Social Support Act (Wmo). Another important topic in the literature is the effect of living independently on the health of older persons. International studies (see Gitlin 2003; Oswald & Wahl 2004), for example, underline the positive effects of good housing and a suitable residential setting on the lives of people with illnesses, and on preventing diseases and health decline. However, little is known about the influence of external factors, such as the type of home and the physical and social setting, on the development of disabilities (Clarke & George 2005). Oswald et al. (2007) have demonstrated that the (perceived) accessibility of the home is related to living independently. Older persons with an accessible home experience more well-being and have a lower probability of developing depressive symptoms. National and international studies show that older persons can employ a variety of strategies (De Boer 1999; Kullberg 2004; Luijkx 2005; Thomése & Broese van Groenou 2006). It is generally assumed that most people apply the strategy of ‘ageing in place’, in which they continue living in one place for as long as possible and seek to avoid major changes (see e.g. Gilleard et al. 2010). Some older persons apply adaptive strategies, generally after a decline in their health. They may for example apply for formal or informal care if they develop disabilities. This care enables them to continue living in the same house or apartment for longer. Some older persons begin looking for a more suitable home in response to health problems (e.g. all rooms on the ground floor), or consider adaptations to their home to avoid having to move. The reactive strategies of older persons fit in with the present objectives of government policy of curbing rising demand for the limited supply of homes suitable for older persons. Anticipatory behaviour does not tally with this policy, i.e. behaviour by vital or relatively young older persons who adapt their housing situation in anticipation of future health problems and begin looking for a suitable home before the need manifests itself (Kullberg & Ras 2004). In their new home they can then get used to their changing health and have the time and energy to build up a new social network. They no longer need to worry about whether a suitable home will be available at the time that they really need it. The characteristics of the home (accessibility and adaptations) help ensure that their demand for care remains relatively low even in the long term. A possible drawback is that they relinquish a pleasant housing situation, which may later prove not to have been necessary. In this chapter we explore the relationship between frailty and the housing and care of older persons. We answer the following questions on the basis of data drawn from the Longitudinal Aging Study Amsterdam (l a sa), measuring frailty using the Tilburg Frailty Indicator (t fi): – What proportion of frail older persons are in different housing and care situations? – Which characteristics of the housing and care situation are related to the course of frailty in older persons? – Which changes in housing and care are related to the course of frailty in older persons? 144


11.2 The housing and care situation of older persons Dutch government policy is based on the assumption that frail older persons will be able to continue living independently for longer if they are provided with good housing and care. It accordingly aims to ensure that there are sufficient stairless homes and homes offering supported living. The l a sa data say nothing about these housing situation indicators, and we therefore looked for alternative housing characteristics. In this section we examine the extent to which the following characteristics show a relationship with frailty: type of housing; availability of home adaptations; receiving professional or informal care at home; and characteristics of the residential setting. Type of housing The lowest frailty rates are found among older persons who live in semi-detached (14%) or detached homes (20%). The percentages among those who live in a flat or ‘other’ type of home – generally sheltered housing – are much higher: 37% and 38%, respectively. Older residents of ground-floor dwellings are relatively often classed as frail (35%). This finding confirms the results of other research which show that if older persons consider moving home or feel they need to do so, they generally move to a ground-floor dwelling or a flat (Kullberg 2004). De Waal-Saulais et al. (2004) also found that a large majority of the over-55s attach great value to having a good and accessible home.3 Home adaptations Dutch policymakers have begun devoting much more attention to ic t and domotics in recent years (t k 2007/2008). The assumption is that adaptations to the home could improve the independent living prospects and quality of life of older persons with disabilities whilst at the same time lightening the load of care providers (see also Vermeulen 2006). Dutch research has however shown that adaptive aids are only provided once major health problems arise (De Klerk 1997). One explanation suggested by the author is that home care staff introduce aids which older persons are unfamiliar with and encourage them to use them. The home care service is a familiar intermediary which advises older persons on aids. Home adaptations and frailty often occur together. Of older persons who had not had any home adaptations in 2005, 18% were frail; the figure among those who had had adaptations carried out was 38%. This difference is understandable, because many of the adaptations are carried out only where there is an indication for them. Older persons who request an such an indication often have severe physical disabilities and score high on the frailty scale (see chapter 4). 62% of older persons with home adaptations are classed as non-frail; in these cases, the home adaptations were probably already present when they moved in (see e.g. De Klerk 2004). It is also possible that the adaptations were carried out for their partner. The highest percentage of frail persons is found among older persons with a ramp to their home or with a personal alarm system (67% and 61%, respectively, are frail). The frailty rate is also relatively high among older persons with a stair lift (55%).

145


De Klerk (2004) also finds that such adaptations are often used by older persons with severe disabilities. There is a substantial group of older persons whose housing situation is matched to their frailty: they live in a ground-floor dwelling or have had home adaptations carried out which meet their needs. There is also a group of frail older persons who do not live in accessible homes. It is not by definition the case that this is an undesirable situation: it may be that these older persons manage perfectly well because they are not physically frail or because they can call on resources such as help from relatives and neighbours. Use of care Physical adaptations to the home are not the only way of enabling people to continue living independently for longer. A ‘care strategy’ can also be applied, in which older persons call in professional carers or ask family and friends to provide informal care. Policymakers work from the principle that compensation for frailty can in the first instance be offered through informal care, and if this is insufficient, by calling on the help of professionals. Government policy on caring for the older population in the context of population ageing (t k 2004/2005: 43) describes the importance of having sufficient good-quality professional care for older persons: That older persons who become frail as a result of health problems, for example due to psychogeriatric disorders, are assured of sufficient good-quality care, even if their number increases sharply due to population ageing. Most older persons who receive professional help are frail (53%: table 11.1). This is a logical outcome and is related to the requirement to be assessed for this kind of care. What is striking is that that 47% of those who use professional help are not frail (100% minus 53%). This may have to do with the fact that a criterion comprising five characteristics is used to determine frailty. Older persons who have between one and four of the characteristics of frailty may also need professional care, for example older persons who have difficulty walking and also become physically tired and live alone. Such persons score below the normal level for total frailty, but may well receive help at home from the home care service. It is also striking that one in four older persons not receiving professional care are classed as frail (18%). Why they do not receive professional help is unclear; it may be that they are able to look after themselves and have therefore not been assessed as needing professional care; it is also possible that the informal care they receive is sufficient. Others do need professional care but are unable to find their way through the application process (De Klerk et al. 2010). Finally, there are older persons who do not like asking others for help and therefore do not want to receive or apply for professional help.

146


Table 11.1 Share of frail older persons by use of informal care and professional care at home, 2005/2006 (horizontal percentages; n = 728)

informal carea no yes private help no yes professional careb no yes

% frail

p-value

26 30

0.18

26 31

0.17

18 53

0.00

a Help with personal care and/or domestic help provided by people living in and/or outside the home. This does not include privately paid help and volunteering. b Help provided at home with personal care and/or domestic help provided by the home care service, home help (or, in the past, district nursing) or staff from a care or nursing home. Source: vu (l a sa’05/’06)

The relationship between frailty and informal and private care is weaker; 30% of older persons who receive informal care are frail, as are 26% who do not receive informal care. The differences between these groups are however not statistically significant (p = 0.18). The conclusion is that frailty in older persons is associated primarily with the use of professional care, and not so much with informal care or private help. The residential setting The policy document on the older population in the context of population ageing (t k 2004/2005: 29) stresses the importance of the residential setting for older persons: Being able to move freely around the neighbourhood, unhindered by obstacles and high kerbs; feeling safe in the public space; being able to move around freely, even when you have difficulty walking. These are values for older persons which go a long way towards determining their quality of life. The expectation is that older persons who live in an attractive setting will less often be frail. There is no relationship between frailty and living in highly urbanised areas (table 11.2). There is also no relationship with living in neighbourhoods with a high or low percentage of immigrants, nor with the average property tax value of the homes in a particular neighbourhood. There is however a relationship between satisfaction with the neighbourhood and frailty; the highest frailty rates occur in older people who are either dissatisfied or are neither dissatisfied nor satisfied with the neighbourhood in which they live (43%). These are older persons who score slightly higher on the social frailty scale, and have fewer contacts in the neighbourhood. The percentage of frail older persons is much lower among those who are satisfied with their neighbourhood (26%). 147


One characteristic of housing situation that has not yet been discussed is safety. Government policy states the following on this topic (t k 2004/2005: 67): The immediate residential and living environment must be ‘ageing-proof’. This implies that allowance must be made when designing neighbourhoods for the future (care) needs of older persons and that additional attention must be paid to safety. In new-build neighbourhoods this is a design requirement which must be proactively taken into account. Table 11.2 Share of frail older persons by characteristics of the residential setting, 2005/2006 (horizontal percentages; n = 728)

degree of urbanisationa very low (< 500) low (500-1000) moderate (1001-1500) high (1501-2500) very high (> 2500) % immigrants in the neighbourhood low (0%-2%) moderate (3%-8%) high (9% or higher) woz-waarde van de wijkb low (< 150.000 euro) moderate (150.000-189.000 euro) high (> 189.000 euro) satisfaction with the neighbourhood dissatisfied or neither satisfied nor dissatisfied satisfied feeling of safety in the neighbourhood does not feel safe feels safe

% frail

p-value

23 25 22 29 34

0.29

24 26 30

0.43

30 27 23

0.29

43 26

0.04

55 22

0.00

a Number of addresses per square km b The property tax value of the neighbourhood was determined using various indicators: average income per household; percentage of households with a low income; percentage of people without paid work; and percentage of households with a low average education. Source: vu (l a sa’05/’06)

There is a strong correlation between frailty in older persons and feeling safe in the neighbourhood (table 11.2); 55% of older persons who do not feel safe in the neighbourhood are classed as frail; this figure is lower among those who feel safe, namely 22%. The conclusion based on the figures in this table is therefore that objective characteristics of the residential community or neighbourhood bear little relationship to the frailty of older persons; satisfaction with the neighbourhood and feelings of being safe in the 148


neighbourhood, by contrast, do show a clear significant correlation with frailty. It is however unclear whether feelings of dissatisfaction and feeling unsafe lead to frailty or vice versa. 11.3 Course of frailty So far we have looked at the relationship between frailty in older persons, housing and care during the study period 2005/2006. It emerged clearly that the share of frail older persons is high among those who live in ground-floor homes. However, it is not possible to deduce from the figures presented how the housing and care characteristics relate to the changes in frailty between 1998 and 2005. In this section, therefore, we examine the relationship between the different courses of frailty and the housing/care situation of older persons (which characteristics of the housing/care situation are related to changes in frailty – the second research question). The relationship between course of frailty and housing type is statistically significant. A fairly high percentage of older persons living in flats are persistently frail throughout the study period (11%). The chance that older persons will become frail is also high if they live in a flat (on the ground floor or otherwise) or, for example, in a terraced house (12-17%). One in three older persons who live in ‘another’ type of home, for example sheltered housing, die following a period of frailty (30%). We also see that older persons who do not live on the ground floor are relatively often non-frail (45%). Those living in accessible dwellings, by contrast, died relatively frequently following a period of frailty (28%). It is striking that 29% of older persons who live on the ground floor are non-frail; it is likely that these people moved to these dwellings in anticipation of future health problems, or that they simply enjoy living in a flat. It is however also possible that they moved on account of health problems on the part of their partner or for other reasons (e.g. for a more comfortable home). The relationship between home adaptations and course of frailty is very comparable. 10% of those with home adaptations are persistently frail, compared with 5% of those without such adaptations. Home adaptations are also relatively common among older persons who died following a period of frailty (31%). It therefore appears that having an accessible home and the presence of home adaptations are indicative for persistent frailty. There is however a possible alternative interpretation: the results could be being distorted by other characteristics which are also related to the degree of frailty. This is probably the case with age: the very oldest are overrepresented among the long-term frail, who more live in accessible dwellings. We find a comparable pattern for use of professional care (table 11.3). Older persons who receive professional care are more often persistently frail (12%). Older persons who died following a period of frailty were also relatively often in receipt of home care (48%). It is striking that 7% of those not receiving professional care are temporarily frail. Some of them receive informal care, while others are able to manage without help from others (not shown in table). In addition, persistent frailty in older persons is related to the use of professional care. It may be that the Needs Assessment Centre (ci z) mainly assigns help to people who have already been frail for some time (De Klerk & Schellingerhout 2006). 149


Table 11.3 Course of frailty by use of informal and professional care, 1998 (horizontal percentages; n = 1042)

not frail (n = 407) use of informal carea no yes use of private care no yes use of professional careb no yes

temporarily frail (n = 63)

became frail (n = 135)

per sistently frail (n = 69)

death after non-frail (n = 164)

death after frail (n = 204)

p-value

41 34

7 4

13 13

7 6

15 18

18 24

0.04

41 31

6 6

13 14

6 9

15 17

18 24

0.09

45 9

7 3

13 12

6 12

16 16

15 48

0.00

a Help with personal care and/or domestic help provided by people living in and/or outside the home. This does not include privately paid help and volunteering. b Help provided at home with personal care and/or domestic help provided by the home care service, home help (or, in the past, district nursing) or staff from a care or nursing home. Source: vu (l a sa’05/’06)

Another notable finding is that it was mainly by older persons who died during the study period (sometimes preceded by a period of frailty, sometimes not) who were receiving informal care. This informal care was offered in the latter years of life. The share of informal care users is smaller for other courses of frailty. Table 11.3 also shows that 7% of older persons who do not receive informal care are persistently frail. Supplementary analyses show that the care need of these persons is not particularly great (not shown in table). Most of them do not receive professional care; they are able to manage or do not want help from others. Finally, there is no statistically significant relationship between private help and course of frailty. This is plausible: many users have probably been receiving this kind of help for many years and do so for reasons of convenience or luxury, not because of health problems.

150


Table 11.4 Course of frailty by characteristics of the residential setting, 1998 (horizontal percentages; n = 1042)

  degree of urbanisationa < 500 500-1000 1001-1500 1501-2500 > 2500 % immigrants in the neighbourhood low (0%-2%) high (≥ 9%) woz-waarde van de wijkb (€) low ( 189.000) satisfaction with the neighbourhood dissatisfied (or neither satisfied nor dissatisfied) satisfied feelings of safety in the neighbourhood does not feel safe feels safe

tempora- became not frail rily frail frail (n = 407) (n = 63) (n = 135)

per sistently death after death frail non-frail after frail (n = 69) (n = 164) (n = 204)

p-value

44 42 47 31 36

5 6 5 7 6

11 15 9 11 16

5 5 9 9 6

24 14 12 17 12

11 18 18 25 25

0.01

43 32

5 7

13 13

6 8

18 15

16 26

0.03

32 39 46

6 7 5

12 15 13

9 6 5

15 15 17

27 19 13

0.00

29 40

5 6

14 13

7 7

10 16

36 19

0.05

22 43

6 6

14 13

14 5

11 17

32 17

0.00

a Number of addresses per square km b The property tax value of the neighbourhood was determined using various indicators: average income per household; percentage of households with a low income; percentage of people without paid work; and percentage of households with a low average education. Source: vu (l a sa’05/’06)

The six different courses of frailty were also investigated in relation to the residential setting of older persons (table 11.4). A less attractive setting is often associated with longterm of frailty: a high proportion of frail older persons are found in neighbourhoods with a relatively high proportion of migrants and in neighbourhoods with low property tax values, as well as in neighbourhoods where people do not feel safe. This latter finding is in line with the literature, which shows that feeling safe helps older persons to remain healthy (Kingston et al. 2001). It therefore seems that certain characteristics of the residential setting (social status and subjective safety) are closely associated with frailty in older persons.4 151


The conclusion is that the courses of frailty differed at the start of the study period on the basis of housing situation (type and accessibility of the home, home adaptations), certain characteristics of the residential setting (such as neighbourhood status and feeling unsafe) and care characteristics (use of home care). The analyses treated the housing and care situation as a ‘given’. However, changes can occur in that situation: people may move home, have home adaptations installed and/or apply for professional care. The relationship between such transitions in the housing and care situation on the one hand and changes in the degree of frailty on the other is the focus of section 11.4. 11.4 Changes in the housing and care situation It is known from the literature that older persons differ in the degree to which they retain their autonomy (see § 11.1). Some of them react to increasing frailty by availing themselves of care or adapting their home. Others anticipate health problems by moving to an accessible home. How often do such transitions actually occur? Here we give a first impression based on the l a sa data. The data show that 85% of older persons did not move home between 1998 and 2005, implying that 15% did do so. The l a sa data confirm the findings of earlier research, which show that most older persons like to stay in familiar surroundings (Kullberg & Ras 2004; Kullberg 2005; Broese van Groenou et al. 2006). Which strategies do older persons who do not move home apply? Many adapt their homes (42%). Professional care is also commonly used; 45% of those who do not move but do adapt their home receive help from professional carers (e.g. home care). Those who neither move home nor install adaptations also relatively often receive professional care (17%). Older persons who moved to a ground-floor dwelling between 1998 and 2005 became frail during that period slightly more often than those who did not move to this type of dwelling (27% versus 18%), but viewed across all the different courses of frailty, the difference is just not statistically significant.5 There is however a significant relationship between professional care and home adaptations on the one hand and the development of frailty on the other. Older persons who install the same number or more adaptations and who retain or are assigned professional help relatively often become frail or had already been frail for a while. These older persons apply a reactive strategy in response to increasing frailty. Another notable finding is that a higher degree of frailty is not reflected in increasing use of informal care. The transition from ‘no or less informal care’ to ‘continuing or new use of informal care’ does not correlate significantly with the course of frailty (p = 0.81).

152


Table 11.5 Relative probability of moving to a ground-floor dwelling and other characteristics, by three courses of frailty (non-frail = reference group) (in odds ratios and percentages; n = 640)a temporarily frail

became frail

persistently frail

R2 b

move to ground-floor dwelling

1.08

1.45

1.33

1

degree of urbanisation low % of immigrants (high = ref.) moderate % of immigrants (high = ref.) property tax values in neighbourhood low (high = ref.) property tax values in neighbourhood moderate (high = ref.) not satisfied with the neighbourhood satisfied with the neighbourhood receiving informal care receiving professional care home adaptations

0.83 0.51 0.55

1.18 1.21 0.99

0.96 1.24 1.12

1.47

0.98

2.33

1.84 0.68 1.63 0.74 1.49 1.04

1.14 1.12 1.80* 1.44 3.26** 0.85

1.18 1.17 3.62** 1.45 5.03** 1.60

16

man (woman = ref.) age education level intermediate (ref. = high education level low (ref. = high

0.26** 1.04 1.02 1.36

0.57* 1.11** 1.98 1.71

0.25** 1.15** 4.15 3.73

27

a Significance: * p < 0.05; ** p < 0.01. b Explained variance. R2 is cumulative (%). Source: vu (l a sa’98/’06)

Using three multivariate analyses, we studied changes in the housing and care situation for different subgroups of frailty, after correcting for a series of demographic and socioeconomic background characteristics of older persons. The first analysis focused on moving to a ground-floor dwelling (table 11.5). We found no correlation between such a move and the course of frailty. In other words, someone who moves to a ground-floor dwelling is not more likely to be frail than somebody who does not make such a move. The earlier finding that feeling unsafe in the neighbourhood is related to frailty in older persons remains intact after controlling for the background characteristics: those who do not feel safe are more likely to fit into the category ‘became frail’ or ‘persistently frail’. In order to prevent frailty, therefore, it is useful to eliminate the causes that make people feel unsafe. Someone who feels safe in their residential neighbourhood will be more likely to go out and is less likely to become (long-term) frail.

153


Older persons who receive professional care are more likely to be frail. This is in line with expectations, because those who are persistently frail are more likely to have a functional disability and therefore be in receipt of professional care. Table 11.5 also shows that frailty is more closely related to age than to moving to a ground-floor dwelling. The very oldest persons are more likely to be persistently frail, regardless of other characteristics such as residential setting, home adaptations and informal care and regardless of sociodemographic characteristics. Finally, men are less likely to be temporarily frail and less likely to become (persistently) frail, regardless of their probability of moving house, characteristics of the home, the help they receive and other socio demographic factors.6 The installation of home adaptations was studied in the second analysis. A transition in home adaptations (from none or fewer to same number or more adaptations, without moving home) is related to the course of frailty, including after correction for use of professional or informal care (table 11.6). Older persons who install new home adaptations (or retain existing adaptations) are more than three times as likely to be persistently frail than to be non-frail. Here we see that men, younger older persons and those not using professional care are less likely to be frail than the older groups. In the final multivariate analysis, the use of professional care was related to frailty; this correlation is fairly strong (table 11.7). Older persons who apply for or retain professional care are between two and four times more likely to be temporarily or persistently frail. The causality probably operates in the reverse direction, with increasing frailty leading to the application for and use of professional care. Apart from the use of care, feeling unsafe in the neighbourhood is also associated with the course of frailty, as are sex and age (see also tables 11.5 and 11.6).

154


Table 11.6 Relative probability of home adaptations, people who do not move home and other characteristics, by three courses of frailty (non-frail = reference group) (in odds ratios and percentages; n = 640)a temporarily frail

became frail

persistently frail

R2 b

same number or more home adaptations

1.11

2.11**

3.43**

1

low % of immigrants (high = ref.) moderate % of immigrants (high = ref.) property tax values in neighbourhood low (high = ref.) property tax values in neighbourhood moderate (high = ref.) not satisfied with the neighbourhood satisfied with the neighbourhood receiving informal care receiving professional care professionele zorg ontvangen

0.87 0.59

1.09 0.92

0.88 0.88

0.75

0.95

1.09

1.66 1.45 0.95 1.42 0.77 2.25

1.10 1.08 1.26 1.78 1.38 3.22**

3.27* 1.58 0.51 4.88** 1.36 6.19**

21


0.13** 1.05 0.96 1.27

0.78 1.09** 1.82 1.39

0.26** 1.17** 2.50 2.02

33


155


Table 11.7 Relative probability of receiving professional care and other characteristics, by three courses of frailty (non-frail = reference group) (in odds ratios and percentages; n = 640)a temporarily frail

became frail

persistently frail

R2 b 15

retaining or applying for professional care

2.32*

3.64**

3.66**

degree of urbanisation low % of immigrants (high = ref.) moderate % of immigrants (high = ref.)

0.91 0.62 0.58

1.11 1.00 1.20

0.93 1.04 1.00

1.53

1.32

1.29

1.25

1.12

2.46

not satisfied with the neighbourhood satisfied with the neighbourhood receiving professional care home adaptations

0.98 1.77 0.79 0.79

1.38 1.70 1.34 0.89

0.84 3.46** 1.25 1.79

19


0.27** 1.02 1.20 1.71

0.66 1.09** 1.85 1.67

0.21** 1.15** 2.38 2.50

30

property tax values in neighbourhood low (high = ref.) property tax values in neighbourhood moderate (high = ref.)


The different multivariate analyses show that feeling unsafe is strongly related to the course of frailty; frail older persons therefore have little resistance to help them deal with feeling unsafe. It also emerges that receiving professional care and installing home adaptations are relatively common among people who become increasingly frail. These housing and care strategies appear to be used mainly as a reaction to increasing frailty. 11.5 Summary The housing and care situation of older persons encompasses different characteristics which are not readily mutually comparable. For example, gaining access to certain housing provisions (such as a ground-floor dwelling) does not require a formal assessment. The relationship between these characteristics and frailty is therefore very different than in the case of professional care (home care). It has become clear in this chapter that an older person’s housing and care situation is often matched to the degree of frailty they 156


experience. For example, the use of housing and care provisions is accompanied by increasing frailty. What is the proportion of frail older persons in different housing and care situations? 35% of occupants of ground-floor dwellings are frail. Frailty is also common among older persons with home adaptations, such as an adapted bed or a personal alarm system. Use of professional care is more closely related to frailty than receiving informal care. Of the environmental characteristics studied, only the subjective indicators are found to be related to frailty: people who are not satisfied with their neighbourhood and who do not feel safe there are more often frail. Which characteristics of the housing and care situation are related to the course of frailty in older persons? Older persons who live in an accessible home are relatively often persistently frail, as are older persons who say they live in a less attractive residential setting. Those who receive professional care are mainly persistently frail older persons; those who do not use professional care often not frail or (only) temporarily frail. There is no significant relationship between private help and informal care and the course of frailty. Moving to a ground-floor dwelling is not common (15%). Such a change in housing situation is not significantly related to the development of frailty. Older persons who live in accessible homes can therefore just as easily be more or less frail as older persons who live in non-accessible homes. Other objective characteristics of the housing situation, such as the degree of urbanisation of the locality or the average property tax value, also play no role in the development of frailty. Our study also shows that two groups are at risk of being frail. First, there are older persons who do not feel safe in their neighbourhood. Those who feel very unsafe are at additional risk of persistent frailty. Too little is yet known about this group, but given the evident risk of frailty, it is important to devote attention to the safety of the residential environment – a recommendation already made in the relevant policy document (t k 2004/2005). The second at risk group are older persons who make adaptations to their home or apply for or continue receiving professional care. The new or continued use of these provisions is clearly related to becoming and remaining frail. This suggests that older persons only (become eligible to) receive help once their frailty has become irreversible. Further research is needed to investigate who these older persons are and whether provisions are being accessed at the right time. Notes 1 This does not rule out the possibility that admission to a care or nursing home can also have positive consequences (see e.g. Den Draak 2010). 2 Dutch policymakers have been interested in this topic since the 1980s, when the idea of older persons living independently was placed high on the political agenda. Several experiments and demonstration projects were carried out to ascertain to what extent older persons with severe health problems were able to continue living independently for longer (see e.g. De Klerk 1997). Substituting institutionalised care for community-based care was found to be possible. People who in the past 157


3

4

5 6

would have gone to a care or nursing home were increasingly able to continue living at home with the necessary support. Only older persons with the most disabilities were (and are) considered for admission to a home (De Klerk 2004). Older persons living independently accordingly began placing increasing demands on care provisions and alternative residential amenities (Knipscheer et al. 2000). The figures also show a mismatch between the housing situation and frailty: 65% (100% – 35%) of those who live in a ground-floor dwelling are classed as non-frail. It is unknown whether they moved into these dwellings as a precaution or whether they moved their earlier with their (unhealthy) partner. Research by De Klerk (2004) produced a comparable result, namely that a substantial proportion of homes for older persons are occupied by people without physical disabilities. A qualifying comment needed to be made here. The fact that a high proportion of frail older persons are found in neighbourhoods with the cited characteristics could also be due to another characteristic shared by these people. They may for example be older persons who moved to an accessible home, and these often tend to be people who are long-term frail. In that case, after correction for such a home move, the positive correlation between the cited characteristics of the residential setting and frailty should disappear. The two groups who died (before or after having been frail) are left out of consideration here. The explained variance in the analytical model underlying the results in table 11.5 is reasonably high (27%). Evidently, the model identifies the most important variables to explain the course of frailty in older persons.

158

Dirk Schaap (aged 91 years)

Some days are better than others. I can still take part in ‘ everything. I’m still myself and I still make jokes with the ladies. You can have a nice conversation with your neighbours here, over a cup of coffee. I can’t complain.

’

lo c a l authorit y supp or t

12 Local authority support Anna Maria Marangos and Mirjam de Klerk 12.1 The Social Support Act (Wmo), a broad piece of legislation Most frail older persons in the Netherlands live independently in the community (see chapter 4). Only a small proportion live in institutions (Den Draak 2010); even those with a disability usually live independently (De Boer & De Klerk 2006). Under the Social Support Act (Wmo), which came into effect in the Netherlands in 2007, local authorities offer support to people who need it to sustain their independence and participation in society. Frail older persons who need support are in other words the target group of the Wmo. On its introduction, the Act absorbed a number of existing laws and schemes, including domestic help provided under the centrally funded Exceptional Medical Expenses Act (aw bz) and the Disability Services Act (Wvg), which was already being implemented by local authorities. To be able to implement the Social Support Act adequately, measures are needed in a number of areas, such as public health, housing and income support. Its broad scope means the Wmo is ideally suited to prevent or compensate for (broadly defined) frailty (see chapter 3 for the definition of frailty). According to the explanatory memorandum to the Act, the goal of the Wmo is ‘participation’. Local authorities are expected to support people with a disability, a chronic psychological problem and/or a psychosocial problem in this ‘participation’ and to compensate them for the deficits caused by their problems. The latter means for example that local authorities have a duty to enable citizens to run a household, to move about within and outside the home, to travel locally using transport and to meet fellow citizens and build social ties. Compensation in these areas increases their independence and gives them more opportunities to participate. Local authorities are free to decide how to support people and whether to place the emphasis on general provisions (such as social/cultural activities, providing odd-job services and building lifetime homes) or to offer individual provisions. Examples of the latter are help in the household, housing provisions (e.g. home adaptations), transport provisions (e.g. collective transport or a mobility scooter) and wheelchairs. Local authorities also differ in their views on who is responsible for obtaining support: their strategies range from placing full responsibility with the citizen up to and including proactively identifying people who might have an unfulfilled support need (Gilsing et al. 2010). This chapter provides an insight into the use of individual Wmo-funded provisions by frail over-65s with a physical disability, and examines which groups use this support. It also provides an insight into the question of whether frail older persons are able to manage adequately with the support they receive, and what the Wmo can mean for this target group. Unfortunately, little is known about the use of general Wmo provisions. For this study, data were drawn from the National Panel of People with Chronic illness or Disability (Nationaal Panel Chronisch zieken en Gehandicapten – npcg)) from the Netherlands Institute for Health Services Research (ni v el), for which older persons with a physical disability were selected who were characterised by physical frailty or a combination of physical and 161


sychosocial frailty. Psychosocial frailty alone is not applicable in this study population. p Frailty was measured using the Groningen Frailty Indicator 2 (Schuurmans et al. 2004) and relates to mobility, physical fitness, visual acuity, hearing, nutrition, multimorbidity, cognition and psychosocial well-being (e.g. missing people around them, feeling down and/or anxious). The scores recorded for older persons on the Groningen Frailty Indicator show a high correlation with the scores on the Tilburg Frailty Indicator used in the other chapters of this report (Metzelthin et al. 2010). 12.2 Frail older persons with a disability 65% of physically disabled over-65s who live independently are frail on the basis of the Groningen Frailty Indicator (gfi). According to the Tilburg Frailty Indicator (t fi) (see chapter 4), 27% of the total population aged 65 years and over who live independently are frail.3 These differing percentages reflect the selectivity of the npcg. The percentage of frail older persons in this panel is of course higher because the panel members have a physical disability and are often also confronted with multimorbidity. People with a severe physical disability, people aged over 75 and people with a low education level are more often frail than those with a mild physical disability, persons aged between 65 and 74 years and the highly educated (table 12.1). Sex, income and having a partner do not correlate with being frail or non-frail. Table 12.1 Frail over-65s with a physical disability, by a number of personal characteristics, 2009 (in percentages; n = 529) is frail severity of disability mild moderate severe

p < 0,05a 50 69 85

age 65-74 years ≥ 75 years

p < 0,05a 56 72

education level low intermediate high

p < 0,05a 69 57 50

total

65

a The significances are based on multivariate analyses, the percentages on bivariate analyses. Source: nivel (np cg’09) scp treatment

162


12.3 Differences in use of and need for Wmo support There is a significant difference between frail and non-frail older persons in their use of and self-perceived need for Wmo-support (table 12.2). Just under half of frail older persons receive no support and also say they do not need it, versus three-quarters of non-frail older persons.4 44% of frail older persons receive (adequate) support, compared with 21% of their non-frail counterparts. Finally, frail older persons more frequently report that they need (more) support. Those who say this would mainly like (more) help with the household, (more) transport options and/or better-quality collective transport; they would also like more activities that are accessible to people with a disability and someone who supports them, such as a volunteer, friend or buddy. Table 12.2 Use of and need for support funded through the Social Support Act (Wmo), over-65s with a physical disability, by frailty, 2009 (in percentages; n = 641)

Wmo support not needed adequate Wmo-support (more) Wmo-support needed

not frail

frail

total

74 21 5

47 44 9

56 36 8

Source: nivel (np cg’09)scp treatment

Use of individual Wmo-support As expected, frail older persons with a more severe physical disability make more use of Wmo-support than persons with a milder disability (table 12.3). Help with the household is the most widely used form of support: 12% use only this provision, and 26% use household help in combination with a help provided under the former Disability Services Act (Wvg). The most commonly used former Wvg-provisions are travel cost assistance (29%), housing provisions such as home adaptations (17%) and transport (13%). Frail older persons with a mild physical disability mainly use help with the household. That is logical, since performing household activities is the task with which this group have most difficulty. Persons with a moderate or severe disability also have problems with mobility or personal care (De Klerk et al. 2006).

163


Table 12.3 Use of support provided through the Social Support Act (Wmo), frail over-65s with a physical disab ility and by type of support, 2009 (in percentages; n = 428) mild physical disability no support only help with household only help through former Wvga help with household and help through former Wvga

moderate physical disa- severe physibility cal disability

total

82 9 2

44 15 15

17 11 22

49 12 13

7

26

50

26

a Housing provision, travel cost assistance, vehicle or wheelchair provided through the former Disability Services Act (Wvg) Source: nivel (np cg’09)scp treatment

12.4 Who receives Wmo-support? Which groups of frail older persons use support provided under the Social Support Act (Wmo)? As indicated in section 12.3, the severity of their physical disability plays a major role here; 83% of frail older persons with a severe disability make use of Wmo-support, compared with only 18% of people with a mild disability (table 12.4). Age is also important; a third of people aged between 65 and 75 years use support compared with two-thirds of those aged over 75 (table 12.4). These differences remain significant after controlling for the severity of the disability. This is because people develop several diseases as they get older or because those diseases become more specific and require more support, as for example with dementia. Other possible reasons are that very elderly persons are generally less fit and often no longer have a partner to support them. The local authority policy can also be a cause: it may be that the very oldest age groups are considered first for certain types of support.

164


Table 12.4 Use of support provided under the Social Support Act (Wmo), frail over 65 is with a physical disability, 2009 (in percentages; n = 369-428) uses support severity of disability mild moderate severe

p < 0,05a 18 56 83

age 65-74 years ≥ 75 years

p < 0,05a 31 67

income level low income middle income high income

p < 0,05a 67 56 25

total

51

a The significances are based on multivariate analyses, the percentages on bivariate analyses. Source: nivel (np cg’09) scp treatment

Income also influences the use of support. Frail older persons with an income up to 1,600 euros per month more often receive support under the Social Support Act (Wmo) than people in the higher income groups. It is very possible that people with a higher income buy the services or aids they need themselves. This idea is confirmed by earlier research; for example, the scp Report on the Elderly 2004 (Rapportage Ouderen 2004) showed that people with a lower income are more likely to receive home care services, whereas older persons with a higher income and higher education level more often purchase private care (De Klerk et al. 2004). Sex, education and household composition are not related to the use of Wmo-support. Another way of looking at users of Wmo-support is to compare frail older persons who use support with those who do not. Those who use support virtually all have moderate or severe disabilities (88%, not shown in table); those who use support are also often aged over 75 (73%) and rarely have a high income (20%). Among non-users these percentages are 46%, 37% and 54%, respectively. 12.5 Who does not receive Wmo-support? Half (49%) of frail over-65s with a physical disability make no use of support provided under the Wmo (see table 12.3). The majority of them (94%) say when asked that they 165


do not need any support. Do these people, who are frail and are therefore by definition confronted with an accumulation of problems, have access to other resources such as a partner, an informal carer or a reasonable income in order to purchase support or aids themselves? This is found to be partially the case. For example, just under two-thirds (62%) of frail older persons without individual Wmo-support are married or cohabiting, and may therefore be able to call on their partner for help. One in six (17%) receive help from an informal carer and 54% have a monthly income of 1,600 euros or more, and may therefore be able to purchase support. There is however a group who have no access to any of these resources: 22% of frail older persons who do not receive support via the Wmo do not have a partner, informal carer or a high income. The vast majority (85%) know that they should apply to the local authority for Wmo-support but, apart from a very small minority (3%), do not feel they need support. 12.6 Does Wmo-support help? Do frail older persons benefit from the support they receive via the Wmo? Does that support enable them to manage their household, with making journeys and in their social contacts (areas in which local authorities have a duty to compensate for the disabilities of their residents)? Most frail older persons receiving Wmo-support feel this is the case (table 12.5). For example, 79% think they are sufficiently able to maintain social contacts and 85% feel they are able to move around in and outside the home adequately. Opinions differ on the contribution made by Wmo-support to this independence. With regard to running the household, three-quarters feel that the support makes a (very) considerable contribution. A relatively large group also think the support helps them in moving around in and around their home and travelling in the local region (73% and 65%, respectively). Individual support plays a smaller role when it comes to maintaining social contacts, however (51%). This may be because the forms of support applied for are not intended for this purpose. Moreover, most people will maintain their social contacts in their own sphere, not in a network organised by the local authority. Those who feel they are not able to manage in the areas mentioned are primarily people with a severe disability or a low income and people living alone. The majority (between 67% and 85%) say they do not need (additional) Wmo-support. It seems remarkable that so many frail older persons state that they do not need any (more) support. What is going on here? Are they not aware of their frailty, or are they perhaps in denial? Are they afraid to ask for support, for example out of a sense of shame? Are they lonely, anxious or depressed? Do they not want ‘strangers in their home’, or do they not want to submit to the possibly irregular timetables of carers? Or is there not really anything amiss at all, and do they simply experience a reasonable to good quality of life (see also chapters 2 and 3)? Have these older persons resigned themselves to their situation, or do they no longer have a (strong) need to participate in the life of society?

166


Table 12.5 Independence by area of life, frail over-65s with a physical disability who receive support via the Social Support Act (Wmo), 2009 (in percentages; n = 216) (more than) sufficiently independent keeping household running moving about in and around the home travelling in the region maintaining social contacts

84 85 78 79

support makes a (very) large contribution 76 73 65 51

Source: nivel (np cg’09)

12.7 What else could the Social Support Act (Wmo) do? This chapter shows that not all frail older persons who could benefit from Wmo-support are actually receiving it. Local authorities could identify frail older persons and examine whether they genuinely do not need support. There are any number of initiatives aimed at identifying frail groups, for example projects in which older persons’ counsellors and volunteers make home visits, or where general practitioners, practice nurses, oddjob service operatives and concierges of housing associations could be given a task in identifying frail older persons. That identification could also be a systematic process. For example, people who are eligible for a flu vaccination could be screened for risk factors such as difficulties with mobility, depression or loneliness (v ws 2009) or for frailty, by asking them to complete a short questionnaire (e.g. a frailty instrument such as the Tilburg Frailty Indicator (t fi) or the Groningen Frailty Indicator (gfi)). A recent standpoint by the Royal Dutch Medical Association (k nmg) also advocates a proactive approach by gps, among other things through screening for frailty, performing a multi-domain analysis and setting up professional programme support services (k nmg 2010). Since the introduction of the Social Support Act (Wmo), a special organisation has also been active, the Stichting Eropaf! foundation, which develops ideas on what should – or should not – be done to facilitate professionals in focusing more on outreach (i.e. operating in the real-life situation of the citizen rather than from behind a desk (www.eropaf.org). If people are willing to receive support after being identified as frail, this opens the way for intervention in the form of material or psychosocial support and it may be possible to prevent or delay a deterioration in their life situation. Local authorities can offer various forms of preventive support. Examples include sociocultural activities, courses to help people deal with anxieties, panic attacks or depressive complaints, social support systems, befriending services and buddy projects. Some care centres are equipped to deal with reports of loneliness. Special conferences are also organised (under the name Eigen Kracht – ‘strong together’) in which potential service users (who are no longer able to resolve their issues alone) and their family, friends or acquaintances pool their strengths and draw up a plan for future. There is currently no clear overview of precisely which services are offered by which municipalities. 167


Although some of these psychosocial interventions appear very valuable, it is difficult to be sure what works. For example, an impact study of ten relatively large intervention projects aimed at tackling loneliness showed that only two succeeded in their mission: the loneliness of participants had diminished, whereas in the control group it had remained roughly unchanged. Four other interventions had at best a preventive effect: the degree of loneliness within the participant group remained the same, whereas it increased in the control group (Fokkema & Van Tilburg 2006). The use of provisions funded under the Exceptional Medical Expenses Act (aw bz) is discussed in chapter 13. A proportion of frail older persons will receive support funded both through the Social Support Act (Wmo) and the aw bz. This could lead to a double administrative burden (e.g. having to fill in the same information on several application forms or having to undergo several medical assessments), as well as coordination problems (see e.g. De Klerk 2006). The coordination between the aw bz and the Wmo is also one of the problem areas cited by Wmo coordinators when they talk about the issues with implementing the Wmo in practice (De Klerk & Schellingerhout 2010). There is a basic assumption that welfare provisions can prevent, reduce or delay the need for care. As long as local authorities are responsible for people’s well-being (through the Wmo) and central government (through the aw bz) for providing care and nursing services, local authorities have few incentives to invest in well-being in order to reduce care use. In section 12.1 we stated that local authorities take different views on who is responsible for obtaining support. Is it right to expect people always to take their own responsibility for this? Or should local authorities have a duty to actively identify them? Moreover, there are ethical questions here, such as: Is it acceptable for older persons to be passive? (And perhaps even: Is it acceptable for older persons to become neglected or lonely?). Can they be permitted to refuse support? It is unclear how local authorities approach questions of this kind. 12.8 Summary What is striking in this chapter is the relatively high proportion of over-65s with a physical disability who fall into the category ‘frail’ – two-thirds, compared with 27% in the population as a whole. Half of these frail older persons with a physical disability receive individual Wmo-support, chiefly those with a moderate or severe disability, those aged over 75 years and those with a low income. A quarter of those who do not receive Wmo-support have no partner, nor an informal carer, nor a significant income with which they could purchase support services themselves. Most of them are aware of the Social Support Act (Wmo) and virtually all of them state that they do not need support. This view even seems to be held by most frail older persons who, despite receiving support, state that they are unable to manage adequately in areas such as running a household or maintaining social contacts. It seems strange that so many frail older persons say they do not require any (more) help. We know little about the possible reasons for this non-use or about the need for and use of preventive Wmo-provisions by frail older persons. 168


Notes 1 The National Panel of People with Chronic illness or Disability (np cg) was launched in 2005 and comprises around 3,500 persons living independently selected from the population aged 15 years and over with a (mild, moderate or severe) physical disability and/or a (medically diagnosed) chronic physical disease (see also Calsbeek et al. 2006). These are people who have had disabilities for some time. For this publication, a selection was made of people with a mild, moderate or severe physical disability because they were invited to answer questions both on Wmo-support and frailty. 2 Frailty is measured on the basis of 15 criteria relating to mobility, physical fitness, visual acuity, hearing, diet, multimorbidity, cognition and psychosocial well-being. A person is classed as frail if he or she meets at least four of the 15 criteria. 3 In a study carried out using the Groningen Frailty Indicator among persons aged 65 years and over living at home in the Groningen region, 32% were found to be frail. 4 It may be that people who do not receive Wmo-support do receive other professional support, for example provided via the Exceptional Medical Expenses Act (aw bz). Chapter 13 discusses the use of aw bz-support.

169

Jacoba Ros-Verbaan (aged 91 years)

feel frail; I’m a contented woman. I was happy to move ‘ Itodon’t the care home and I’m still very pleased that I did. Physically: I have trouble walking, I’m a bit forgetful, but I can’t complain. I had a fall recently, and also had a tia , but I don’t worry about it. It happened, and I just get on with it.

’

nur sing a nd c a re

13 Nursing and care Cretien van Campen and Maaike den Draak 13.1 Older persons who are frail, in need of care and receiving care The Exceptional Medical Expenses Act (aw bz) was introduced in the Netherlands in the 1960s to provide support for frail members of society by providing cover for uninsurable health risks such as admission to a nursing home. Today, three-quarters of recipients of aw bz-funded care are aged over 65 (Woittiez et al. 2009). This chapter explores the extent to which the present-day aw bz offers care to frail older persons in the Netherlands. Many forms of care have been funded through the aw bz in recent decades. Providing care for older persons has become the biggest area, comprising homecare, care and nursing home care (referred to jointly as ‘nursing and care’). In this chapter we restrict ourselves to the care functions that are used most by older persons living independently in the community and those living in institutions: household care (e.g. help with cleaning), personal care (e.g. help with washing and dressing) and nursing care (e.g. treating wounds and giving injections).1 Since the introduction of the Social Support Act (Wmo), some care previously financed centrally through the aw bz has been transferred to local authorities, especially household care and psychosocial support.2 As the provision of care through the Wmo was discussed at length in chapter 12, the emphasis in this chapter lies more on the aw bz care functions: personal care, nursing and institution-based care. The Wmo-provision ‘household care’ will also be considered as part of nursing and care (cf. Woittiez et al. 2009). aw bz-funded care is provided on the basis of assessed need. An older person can apply for aw bz care to the Needs Assessment Centre (ci z); applications for Wmo provisions are made to the local authority. In view of the increased demand for aw bz provisions in recent decades, the government has tightened up the eligibility policy, based on the principle that ‘only the most frail’ should be eligible for aw bz care (t k 2009/2010). However, precisely who the ‘most frail’ are is open to interpretation, and it is not entirely clear which persons the government has in mind. In this report we have been able to identify the frail older population reasonably well; that offers an opportunity to analyse the extent to which aw bz care reaches frail older persons. Figure 13.1 Step model of increasing frailty healthy

frail

in need of help

applicant for help

care user

not frail ------------------------------- ------------------------------------- very frail

171


A number of steps lie between becoming frail and the moment at which an indication is given for nursing and care (see figure 13.1). To start with, not all frail older persons consider themselves in need of help, either because they are not aware of it or do not wish to be dependent, or for other reasons (cf. chapter 2). Of the frail older persons who do regard themselves as needing help, some resolve their need for care by calling on family or friends (informal care) or hiring in private help. Some also apply to their local authority and/or the national Needs Assessment Centre (ci z) for long-term help. Some applicants will be refused because, although frail, according to the assessment criteria they are still sufficiently independent and/or are still receiving sufficient help from their social network. Others will be assessed as being eligible for provisions under the Wmo and/or the aw bz, entitling them to care. The progressive steps in figure 13.1 show that, theoretically, a difference may be expected between ‘frail older persons’ and what the government describes as the ‘most frail’ people in the Netherlands. We will express this difference numerically later in this chapter. To do this we distinguish three groups: frail older persons, older persons needing help and older persons receiving collectively funded nursing and care (under the aw bz and/ or the Wmo). In theory, the first group incorporates the second and third groups and the second group includes the third group (see figure 13.1). The distinction between the three groups becomes apparent when looking at their independence. Users of nursing and care services are not able to function independently and therefore receive care. Those in need help are also not independent – and would in fact be eligible for care – but resolve their needs (partly) in some other way, for example with help from family and friends (informal care), through self-help, through home adaptations or in some other way. A proportion of frail older persons are not independent, need help and use care. Another group are evidently both frail and independent. These persons believe they are able to manage but consciously or unconsciously run a great risk of becoming dependent on care within a few years (see chapter 6). Virtually nothing is known about this latter group. In the combined avo/oii database (avo: Amenities and Services Utilisation Survey; oii: Older Persons in Institutions survey; see chapter 4) of persons aged 65 years and over living independently and living in institutions, three groups were defined as follows. The group of frail older persons consists of persons with a score of 5 or more on the Tilburg Frailty Indicator (t fi; see chapter 4). The group needing help comprises persons who may be expected to apply for help on the basis of their need.3 These are persons with the same characteristics, such as age and disability is, as people who are eligible (have been assessed and given an indication) for nursing and care (Woittiez et al. 2009: 24).4 The group who use nursing and care are persons who live in care and nursing homes and persons living independently who have received collectively funded home care within the last 12 months (cf. Woittiez et al. 2009). In this chapter we answer the following questions: How many frail older persons use nursing and care services, and what forms of nursing and care do they use? Which frail older persons use no nursing and care services? How will the number of frail older persons develop in relation to the number of users of nursing and care?

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13.2 How many frail older persons receive nursing and care? Six out of ten frail older persons have received nursing and care in the last 12 months through the Wmo (local authority) or the aw bz (ci z) (table 13.1). The total number involved is approximately 415,000 persons. The majority of (approx. 230,000) received care via the local authority. Around 160,000 frail older persons received homecare through the aw bz on the basis of assessment by the ci z; roughly 130,000 received aw bz-funded care in a care or nursing home. Table 13.1 Use of nursing and care by frail older persons, 65 years and over, 2007 (in percentages and numbers x 1,000)a %

estimated number

reliability interval

Wmo-funded home care (household help) awbz-funded home care (personal care and/or nursing help) total home careb

34

231

195-267

24 42

160 283

130-191 244-322

awbz-funded institutional carec

20

132

128-136

total nursing and care

62

415

378-452

a Significance: * p < 0.05; ** p < 0.01; *** p < 0.001; n.s. = not significant. b Total: household help, personal care and/or nursing care through the Wmo or awbz. c Care and nursing home care. Source: scp (avo’07, oii’08)

Which nursing and care services do frail older persons use? As residents of institutions receive a total package of care, we look here only at those who live independently. Four out of ten frail older persons then receive household care via the local authority. A quarter receive help with personal care and one in eight receive nursing help at home (table 13.2). Naturally, frail older persons receive home care more often than their non-frail counterparts. It is striking that one in ten non-frail older persons receive home care. It may be that these persons received this care temporarily during the past year and now no longer need it.5

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Table 13.2 Frailty by home care services received through the Wmo or the awbz a, population living independently aged 65 years and over, 2007 (vertical percentages)b

household help (Wmo) personal care (awbz) nursing help (awbz) totalc (n)

frail

not frail

total

sign.

42 25 13 51

9 3 2 11

17 8 5 21

*** *** *** ***

463

1430

1894

a Help provided by a care institution, housing institution or other care provider in the year preceding the survey and funded from a personal budget. b Significance: * p < 0.05; ** p < 0.01; *** p < 0.001; n.s. = not significant. c Total: household help, personal care and/or nursing help through the Wmo or awbz. The percentages in the three columns add up to more than the total percentages, because persons may receive several forms of care. Source: scp (avo’07)

13.3 Frail older persons without nursing and care Which frail older persons do not receive nursing and care? Four out of ten frail older persons make no use of nursing and care services provided through the Wmo or aw bz (table 13.1). There may be a variety of reasons for this, such as the method of assessment and related assessment criteria, a degree of independence or the presence of informal care. However, no research is being carried out to determine this. A first step is to identify the group of frail older persons not receiving nursing and care. We describe this group here by comparing them with the group who do receive care (table 13.3).

174


Table 13.3 Characteristics of frail older persons with and without nursing and care (in percentages)a   man average age (in years) Are you able to be sufficiently physically active? Do you have problems in your daily life because of difficulty walking? difficulty maintaining your balance? difficulty hearing? difficulty with your vision? physical tiredness? Have you felt down in the last month? Have you felt nervous or anxious in the last month? Do you live alone? Do you sometimes miss having people around you? (n)

without

with

sign.

38 76 46

23 80 54

*** *** n.s.

69 76 35 35 84 30 28 53 30 225

89 89 21 36 85 24 30 73 29 239

*** ** ** n.s. n.s. n.s. n.s. *** n.s.  


Frail older persons without nursing and care differ clearly on a number of points from frail older persons in receipt of care. The frail older persons not receiving care are younger on average, are more often men, more often live with someone and less often have mobility disabilities. This group thus generally have more resources available: their better mobility, relatively young age and the fact that they live with a partner, in particular, suggest that they are more independent with their partner, children living at home or friends.6 13.4 Trends in frailty and demand for nursing and care The rise in the use of nursing and care services by older persons is the main factor driving up the costs of the aw bz. At the request of the Dutch Ministry of Health, Welfare and Sport, therefore, scp has for some time compiled forecasts of the demand for and use of nursing and care (Woittiez & Timmermans 2004; Jonker et al. 2007; Woittiez et al. 2009). As well as being a group who use and apply for nursing and care, frail older persons are also a group that need to be monitored in the light of future demand for nursing and care. Part iii of this report showed that frail older persons are more likely to be admitted to a care or nursing home within a few years (see chapters 6 and 8). Four out of ten frail older persons may not be receiving nursing and care at present, but this group are more likely to begin using long-term home care or institutionalised care funded through the aw bz within a few years. It is therefore important to estimate the size of the future group of frail older persons (as in chapter 5), alongside existing scp estimates of the 175


demand for and use of nursing and care. Early identification and intervention (prevention) by general practitioners and local authorities could prevent some of this group needing to make demands on the aw bz. It was established in chapter 5 that the number of frail older persons will rise in the period 2010-2030 from around 690,000 to around 1 million. How does this trend compare with the use of nursing and care in that period?7 This is visualised in figure 13.2 using trends in the total number of frail older persons, the number of frail older persons receiving collectively funded nursing and care and the total number of older persons receiving this care, all in the period 2010-2030. Figure 13.2 Trend in the number of frail older persons and use of nursing and care in the population aged 65 years and over, 2010-2030 (in absolute numbers) 1,100,000 1,000,000 900,000 800,000 700,000 600,000 500,000 400,000 300,000 200,000 100,000 0 2010

2015

2020

2025

2030

number of frail older persons use of collectively funded care (Wmo/AWBZ) use of collectively funded care by frail older persons

a Frail older persons are persons aged 65 years and over with a score of 5 or more on the Tilburg Frailty Indicator. b Use of nursing and care includes household care, personal care and nursing care at home, as well as care and nursing home care, funded through the Wmo (local authority) or awbz (central government). Source: scp population model

In 2030, a quarter of the older population will be frail, or roughly a million people. The number of older persons receiving collectively funded nursing and care will be slightly lower than this. The number of recipients of collectively funded nursing and care will increase more rapidly over the next two decades (60%) than the number of frail older persons (50%). The trends shown in figure 13.2 suggest that the use of nursing and care will catch up with the number of frail older persons. If we look at the trend in the 176


number of frail older persons who will use collective nursing and care services, we see that this figures reaches only around 600,000 in 2030. Note that there is a key difference between the trend in use of nursing and care and the trend in frailty. Use of nursing and care was estimated on the basis of objective assessment criteria from the ci z and municipal Wmo departments, while frailty was determined on the basis of the opinions of older persons themselves. This difference becomes clearer when the number of frail older persons receiving nursing and care is considered. Only 60% of the frail over-65s will use collectively funded nursing and care in 2030. 13.5 Discussion and recommendations The provision of support and care to older persons through collectively funded nursing and care services (Wmo and aw bz) is based on an assessment system which determines who is eligible for collectively funded care and how much care each person is entitled to. With a generous assessment, frail older persons will also be eligible for care. In recent years, the assessment criteria for eligibility to aw bz-funded care have been tightened up; applications for nursing and care are more often rejected if an informal carer is available in the applicant’s social network. The government recently also tightened up the assessment criteria for psychosocial support, so that only ‘the most frail’ are eligible (t k 2009/2010). Seen in this light, it is not surprising that only half the frail older persons in the Netherlands receive nursing and care on the basis of an indication from the Needs Assessment Centre (ci z) and/or the local authority. Frail older persons in the Netherlands are not eligible for care until something is actually wrong with them. In that case, generally because of a physical disease or disability, they will receive nursing and care.8 This assessment-based approach ignores two aspects that are essential in caring for older persons. First, people often receive care on the basis of a visible functional disability; however, most frail older persons do not require help because of a single disability, but because of an accumulation of related complaints. Many older persons have more than one chronic disease, and a broad-based assessment system would identify more frail older persons. A second essential characteristic of caring for older persons is that they become frail gradually over a period of time: they do not suddenly change from being non-frail one day to being frail the next. The present assessment system lacks this temporal perspective. Judging from the records, it would seem as if older are independent and able to look after themselves right up to the moment that they suddenly stop being so, at which time they are assessed as being in need of care. Subsequent reassessments then show, for example, that the amount of care increases in the following years. In reality, of course, the moment that an older person is assessed as being eligible for care is preceded by a process of increasing frailty. As registration in the care system begins only at the moment that an older person is severely in need of help, the present system lacks the instruments to intervene earlier in the process of increasing frailty. It has been shown that early intervention can prevent admission to a care or nursing home and premature death. 177


This report presents instruments which could improve the assessment system in the Netherlands. First, using a simple questionnaire to be completed by the older person or their informal carer would make it possible to identify frailty across the older population at an early stage (see Part ii of this report). Second, repeated completion of the questionnaire at regular intervals could bring to light the course of frailty in older persons (see Part iii), avoiding the need to wait until the first positive assessment by the local authority or the Needs Assessment Centre (ci z). Frail older persons could then be identified at an early stage and be brought on to the radar of the local authority and/or the ci z much earlier. The costs of administering the questionnaire would be minimal. It would not lead directly to care, because in principle there is as yet no indication of a care need, unless the identified course of frailty in the older person makes shows an immediate need for care. 13.6 Summary Care for the older population in the Netherlands was for a long time organised and funded on a broad national basis through the Exceptional Medical Expenses Act (aw bz). A few years ago, organisation of part of the care for older persons was shifted to a more local level, namely the municipality, and this portion is funded through the Social Support Act (Wmo). In addition, the Dutch government is placing more responsibility for caring for older persons on the recipients of care themselves and their social networks. The question is: How far do household help and personal nursing and care services today meet the needs of frail older persons who live independently? The eligibility of older persons for collectively funded nursing and care services is determined on the basis of an assessment by the local authority (Social Support Act – Wmo) or the national Needs Assessment Centre (ci z) (Exceptional Medical Expenses Act – aw bz). As demand for aw bz provisions has increased in recent decades, the government has begun tightening up the eligibility criteria. Six out of ten frail older persons had received nursing and care from the local authority (Wmo) or the government (aw bz) in the 12 months prior to the study. In total, they number approximately 415,000 persons. Most frail older persons (approx. 230,000) receive care services in their home from the local authority. Around 160,000 frail older persons receive home care based on an aw bz assessment by the ci z. Approximately 130,000 frail older persons live in care or nursing homes. Four out of ten frail older persons do not receive nursing and care services. Compared with their counterparts who do receive such services, frail older persons not receiving care are younger on average and are more often men; they also less often live alone and have fewer mobility disabilities. These resources mean that, although they are just as frail, they are less in need of help. In 2030 a quarter of the Dutch population aged 65 years and over will be frail. A quarter of the older population will make use of collectively funded care (aw bz and/or Wmo). The overlap between these groups is however limited; only 60% of frail over-65s will use collectively funded nursing and care services in 2030. The present system of assessment by local authorities and the ci z could be improved or supplemented by repeated meas178


urements of frailty at an early stage, well before older persons develop a need for help and apply for care and support from the local authority or the ci z. These measurements of frailty could be carried out by older persons themselves or their care workers by completing a short and simple questionnaire (with 15 ‘yes/no’ questions). This would offer local authorities and the ci z an instrument for tracking frailty in the older population. Notes 1 The institutions which provide long-term care to older persons are home care organisations, residential care homes, nursing homes, institutions for people with physical or intellectual disabilities, regional sheltered housing institutions, psychiatric hospitals, psychiatric departments of general hospitals, hospitals and rehabilitation centres. Since the majority of older persons use home care services, care homes and nursing homes, we have restricted our analyses to the nursing and care sector. 2 The expectation is that use of the function ‘psychosocial support’ will decline (ci z/hh m 2008). Many older persons receiving this service will apply for other forms of care, primarily through the Wmo (Dam et al. 2009). 3 Woittiez et al. (2009) describe this group as ‘potential applicants’ for nursing and care. 4 A proportion of this group have the characteristics needed to meet the assessment criteria but will nonetheless be rejected on the basis of the ‘usual care’ criterion (i.e. there is sufficient informal care available). 5 It is also possible that a recipient of home care has one severe disability. He or she will then record a low score on the frailty measure (t fi), which measures an accumulation of multiple problems. 6 The group not receiving care are less frail on average (with a t fi score of 7.9). This is a statistically significant difference (p < 0.01). 7 By nursing and care we mean care for older persons provided in their home or in an institution. It includes household help, personal care and nursing in the home setting as well as care and nursing home care. The household help is funded by the local authority through the Social Support Act (Wmo), while the other care functions are financed nationally through the Exceptional Medical Expenses Act (aw bz). 8 It may be that a small proportion of frail older persons received psychosocial support through the aw bz and/or Wmo. These persons were left out of our analyses.

179

Hendrika Taal -Toet (aged 89 years)

take an upbeat view of life. You feel less frail then. I’ve had a ‘ Ihard life, but I don’t let things get me down. I have a positive nature, always try to look on the bright side and can manage very well on my own. I still dress nicely, wear jewellery and make-up. I’d like to go on for a very long time yet; I can’t imagine no longer being here.

’

fr a ilt y a nd m a inta ining qua lit y of life

14 Frailty and maintaining quality of life Concluding discussion Cretien van Campen

Care professionals in the Netherlands have signalled that the late recognition of frailty in older persons is an urgent problem (Gezondheidsraad 2008, 2009; k nmg 2010). Older persons can be offered better treatment if their multiple physical, psychological and social problems are identified early. Policymakers regard the frail older population as an important target group, but give no indication of precisely which persons they have in mind. Several definitions are used in scientific research, but there is no consensus as to which should be followed (see chapter 3; cf. Slaets 2004; Deeg & Puts 2007; Van Iersel et al. 2009; Kempen 2009; Gobbens et al. 2010a). The Dutch Ministry of Health, Welfare and Sport asked the Netherlands Institute for Social Research | scp to carry out an exploratory study of the frail older population in the Netherlands. In the policy discussions surrounding care for older persons, this relatively young concept is used alongside older and more established concepts such as functional disabilities, (multi)morbidity, quality of life, independence (autonomy) and ability to manage. What does the notion ‘frailty’ add to these concepts? Dialogue between older person and carer The first thing that came to the fore in this study is that ‘frailty’ is a ‘care professionals’ concept’ which has little meaning for older persons themselves. Frail older persons report that this concept says little to them and that they have difficulty imagining what it might mean (see chapter 2). The primary consideration for older persons is maintaining their quality of life (Mootz 2009; De Lange 2009; Hertogh 2010). Research has shown that the concepts ‘frailty’ and ‘health-related quality of life’ largely coincide in terms of their content (see chapter 3; cf. Egging & Van Campen (forthcoming)). The best approach for care professionals is therefore to speak to frail older persons in terms of the maintenance and loss of quality of life; they would do better to avoid professional jargon or terms derived from the international literature, such as ‘frailty’. Using the term ‘frailty’ also illuminates only one side of the balance between the burden to be borne by older persons and their capacity to bear it. To date, research on frailty has devoted little attention to this capacity, for example in terms of their resilience. Research on quality of life offers more insight here (cf. Pot 2010; Westerhof & Bohlmeijer 2010). In discussions with frail older persons, therefore, attention ought to be given to both sides of the balance. The purpose of any intervention is after all to restore the balance between burden and capacity in the lives of frail older persons (cf. Zijlstra 2008). Currently general practitioners, ‘practice nurse’ and local authority assessment officers already visit older persons at home for an ‘interview’ in the context of the Social Support Act (Wmo), though this is not yet the rule or custom (k nmg 2010; v ng 2010). The practice varies from one gp to another and from one local authority to another. Some general 181


practitioners set aside time during a consultation for an ‘overall problem review’, while others adopt a ‘complaint-based’ approach. Something comparable happens at local authorities; some municipal assessment officers make home visits for an overall problem review, while others make their assessments in a ‘claim-based’ way and deal separately with each application for an individual provision (De Klerk et al. 2010; Boekholdt & Coolen 2010). Organisations representing older people complain that discussions with the doctor focus mainly on medical topics and that little attention is given to problems such as loneliness and social exclusion (Slager & Van Minnen 2010). Engaging in dialogue with frail older persons requires preparation and a careful approach. First, the conversation has to be conducted in a language to which the older person is receptive. A conversation about maintaining their present quality of life (their own home, family and friends, hobbies) will have much more meaning for them than a conversation filled with the medically slanted jargon of the care professional. Second, carers need to set aside time for a conversation. The time that a general practitioner is able to set aside for a consultation, or a Wmo assessment officer for a home visit, is however limited. In some general practices and local authorities, more time is set aside for an overall problem review based on a home visit. However, these visits cost time and money. It is therefore important to identify frail older persons at an early stage, because more time can then be set aside to review the problems of this specific group. Identifying frailty Early identification of frailty in older persons obviously has advantages and disadvantages. One advantage is that people can be helped at an early stage to prevent things getting worse. A disadvantage is that it means intervening in the personal life of someone who has not yet asked for help themselves. This remains a difficult judgment. Thanks to the recent attention for frailty, instruments have been developed which make it possible to detect frail older persons. An example is a short questionnaire of 15 ‘yes/no’ questions which older persons can fill in themselves and which offers a quick and simple means of detecting frail older persons. This questionnaire could be administered at little cost by care professionals, assessment officers, housing associations, local authorities, welfare workers, community workers, older persons’ organisations, and so on. A high proportion of older persons will be able to complete the questionnaire themselves. The problem, of course, is that it is precisely frail older persons, especially those with cognitive issues, who will find it more difficult or simply be unable to complete the questionnaire. On the other hand, these older persons will often already be receiving care. It is mainly the group of older persons in the early stages of frailty, i.e. the target group for early recognition, for whom the instrument is intended, and they are usually able to fill in the questionnaire themselves. In addition, as this study has shown, this instrument is also suitable for use in population surveys and polls. In short, such a measurement instrument would seem to be an ideal means of identifying the target group for further research. One difficulty is that there are currently several different questionnaires available, which identify different forms of frailty. One instrument identifies physical frailty, the other also includes psychosocial frailty. 182


Similarly, one instrument identifies frailty with a view to a specific geriatric intervention, while another also takes into account the life situation of the older person. There is a need for a consensus on one instrument which can be used across the board to identify frailty in older persons. Work is in fact going on to evaluate the frailty measurement instruments already in use in intervention studies (see www.nationaalprogrammaouderenzorg.nl (in Dutch)). It is known that older persons with multiple, complex problems often come into contact with a whole series of institutions and care professionals, ranging from their gp to the pharmacist, nurses, physiotherapists, geriatricians, hospital specialists, welfare workers, transport and housing providers from the local authority, home care services, mental health care services, in addition to informal carers and volunteers. The services of these different providers are not always ideally coordinated in practice, and there is a great need for multidisciplinary cooperation in the system of care for older persons (Mootz 2009; Boekholdt & Coolen 2010). Many care professionals also feel that an integrated approach to identifying frail older persons would make clearer which care professionals need to be involved in providing treatment and support. Frail older persons with multiple problems would probably benefit from integrated care (i.e. coordinated care provided by different professionals) with a single point of contact for the older person and their family. Currently, gp practice nurses often fulfil this role. Multidisciplinary cooperation in this area is however proving difficult to get off the ground (Timmermans 1994; De Klerk 2004). Experiments with cooperation were carried out in health centres in the 1970s and 80s (Sixma 1997), and experiments have also been started in the National Older Persons Care Programme aimed at promoting multidisciplinary cooperation (www.nationaalprogrammaouderenzorg.nl (in Dutch)). Although many care professionals, researchers and policymakers embrace the idea of an integral approach to frailty, there is as yet little scientific evidence that early identification of frailty produces health gains or that multidisciplinary treatment and care enhance efficiency and effectiveness. There is accordingly a need for scientific evidence and an insight into which forms of multidisciplinary cooperation produce health benefits for frail older persons. We shall return to this later. One group who are left out of consideration in Dutch studies of frail older persons are older persons of non-Western origin. There is a suspicion that this group contains many frail people. Little is also currently known about the relationship between frailty, ethnic origin, migration and integration into Dutch society (Çelik & Groenestein 2010). Older members of non-Western ethnic minorities who have lived in the Netherlands for a relatively short period and who speak Dutch poorly or not at all and live in social isolation probably experience a different kind of frailty from the older persons described in this report (Schellekens 2009; Raghoebier & Witter 2010). However, they constitute a very small proportion of the older population, and moreover the share of older persons in non-Western ethnic minority groups in the Netherlands is much lower than in the native Dutch population. A few studies have recently been carried out on the course of health problems in older ethnic minorities (Kulu Glasgow et al. 2010; Goudsmid et al. (forthcoming)).

183


The right intervention at the right time Frailty is a process of decline caused by an accumulation of physical, psychological and/ or social deficits. This view of frailty differs from the standard approach taken in Dutch hospitals, for example, where the thinking is more in terms of disease categories (cf. Gezondheidsraad 2009). In the funding framework for the diagnosis/treatment combinations employed by Dutch hospitals, little attention is paid to the simultaneous presence of multiple diseases, the circumstances under which diseases arise and the course of frailty. This funding framework influences the approach to treatment, which is focused on single disease categories and is therefore not ideally suited for the multiple and complex problems faced by frail older persons. A multidisciplinary approach would appear to be a better option, but this is difficult to fit into the present funding system (Mootz 2009). In order to adequately reflect the dynamic of frailty, this report has explored the way in which frailty develops, as well as whether different patterns can be discerned in that development. The results show that frail older persons cannot be treated as a homo genous group. Depending on the course of their frailty, different interventions may be needed, at different times. In order to be able to determine the right moment for an intervention and what that intervention should be, it is important to map out the course of frailty clearly. In our study, for example, the finding that some people are ‘temporarily frail’ makes clear that ‘once frail’ does not have to mean ‘always frail’. It would be interesting to investigate when frailty reduces and what causes this turnaround. It is recommended that existing panels and monitors of older persons continue to receive support, because they can provide an insight into the course of frailty in older persons. Longitudinal series are however costly and are hampered, especially in studies of the older population, by high rates of dropout due to severe disease and death. More and more data are nonetheless becoming available in the Netherlands from panels and monitors in which there is a substantial representation of older persons; examples are the Longitudinal Aging Study Amsterdam (l a sa), the National Panel of People with Chronic illness or Disability (npcg), the Healthy Older Persons Population Monitor (Bevolkingsmonitor Gezondheid Ouderen), the Older Persons Mental Health Monitor (me mo) and the Resident Assessment Instrument (r a i) database. These databases offer tools for monitoring and investigating frail older persons in the population. Time series analyses could produce many new insights into the course of frailty during the life of older persons (Pot 2009). The longitudinal analyses presented in this report offer a basis for more advanced studies. A more refined picture of the dynamic of frailty, for example, would provide an insight into the interaction between maintaining quality of life and investments in care. Costs of population ageing Politicians regard population ageing as a major problem for the future. The discussions generally focus on the increasing cost burden that an ageing population places on society. The observation that a quarter of the Dutch population will be aged over 65 in 2030 is often followed by the question of how we as a society will be able to pay for this. It is

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tacitly assumed that (many) of those older persons will require expensive care and that frail older persons, in particular, are a group who will generate higher costs. In fact, frail older persons in themselves do not generate extra costs. It is only when they need help that they could potentially cost society extra money. If society succeeds in recognising frail older persons at an early stage, it may be possible to avoid costly care and manage with lighter (and therefore cheaper) forms of care (cf. Q-consult 2008). This lighter care can often be provided by the older person themselves and their family and friends (De Boer et al. 2009). This potential saving on publicly funded provisions thus goes hand in hand with giving more control to older persons and their networks, in addition to more autonomy and independence. The estimates presented in this report already provide indications that older persons in the future will have a lower risk of becoming frail because they will have a higher average education level and will therefore have access to better resources and competencies to take control of their situation themselves. The estimates allow for the fact that both the average life expectancy and the number of people aged over 85 years will increase (‘double population ageing’). A small piece of good news for the public finances is that the number of frail older persons is projected to rise less quickly than current demographic models suggest. In fact, the share of frail older persons in the population aged over 65 will actually fall in the coming decades. Nonetheless, it remains the case that the number of frail older persons in the Dutch population is likely to increase by more than 300,000 over the next 20 years. As yet, little is known empirically about the potential cost savings through early identification of frailty in the older population. It is recommended that cost/benefit analyses be carried out based on longitudinal data on older persons and their use of care; these analyses could reveal at which point in time or as a result of which events during the life course the benefits and costs rise or fall. Who can do what? The right intervention at the right time is an important condition for preventing premature care or nursing home admission or death; but who should take the initiative and when? Using the knowledge we now have, let us return to the case of Mrs H., who featured in the Introduction to this report. Who could have done what in her final years of life? Older persons In the first place, Mrs H. could have done something herself if she had been aware of her increasing frailty. Older persons often do not realise that they are frail. That awareness could be increased if they were able to fill in a questionnaire (online or via newsletters and folders or during interviews with care professionals). Anyone scoring above the threshold value on the questionnaire would then know that a visit to their doctor was advisable. There are great advantages if older persons are aware of their frailty: they recognise the problem and can begin working on a solution, for example by living more healthily, exercising more, organising a social support network and increasing their resilience. 185


They will then be more likely to take responsibility for their health and will be better able to retain control over their lives, thereby increasing their subjective quality of life (Westerhof & Bohlmeijer 2010). Special courses are available which help older persons to develop and apply these skills (Steverink 2009; Kempen 2009; Jonker et al. 2010). General practitioners This study shows that gps see 80% of frail older persons. General practices are at the forefront in identifying frailty in older persons and in the multidisciplinary treatment of their problems. By using a questionnaire, gps would be easily able to establish signs of frailty, regardless of the complaint which brought the older person to the practice. The questionnaire would then enable the gp to identify more problems than those recounted by the patient themselves and to prescribe treatment intended to improve the overall functioning of the older person rather than just focusing on the reported complaint (Gezondheidsraad 2008, 2009; Mootz 2009; Kempen 2009). Local authorities Questionnaires for measuring frailty could help local authorities in performing their duty to monitor, identify and prevent health problems in older persons (t k 2009/2010; Zantinge et al. 2011). Identifying frailty can help in achieving the goals set out in the Dutch Public Health Act (w pg): ‘a. the systematic monitoring and identification of the health of older persons and of factors that promote and endanger health; b. estimating the care needs; c. early detection and prevention of specific disorders such as multimorbidity (w pg 2010, art. 5a). Local authorities devote indirect attention to frail older persons by organising projects designed to combat loneliness and promote self-determination, by focusing attention on socioeconomic health differentials, and by stimulating physical fitness (Van Regenmortel 2010; Zantinge et al. 2011). Regular exercise promotes the health of older persons and can prevent deterioration in functioning, independence and social participation (Chorus et al. 2010). A cautionary note here is that persuading older persons to change their lifestyle can often be difficult, since they have often developed ingrained habits (Zantinge et al. 2011). The Social Support Act (Wmo) imposes a duty on local authorities to compensate citizens living in their municipality for the consequences of their disability in several areas (such as running a household, making journeys or engaging in social contacts). This study reveals that compensation in the form of home adaptations is offered only at the point that the frailty has become irreversible. It would make sense to have frail older persons on the radar before this. Some of these older persons may in fact already have been on that radar, for example when applying for household help through welfare services. When older persons contact the Wmo department at their local authority, it is usually to apply for an individual provision, such as household care or home adaptations. When this happens, local authorities could also look at ‘the question behind the question’; in fact, most local authorities do this (De Klerk et al. 2010; v ng 2010) – or at least, that is their intention, because in practice it does not always happen. For example a quarter of applicants for an individual provision feel that too little consideration is given to their 186


personal situation (De Klerk et al. 2010). A frailty indicator would give local authorities a tool enabling them to identify an important target group of the Wmo and to see where older persons experience problems. Nursing and care Older persons who are no longer able to run a household or to maintain control over their lives are eligible to receive care at home; if the situation is more serious, they are entitled to be admitted to a care or nursing home. The Needs Assessment Centre (ci z) carries out assessments for long-term care funded under the Exceptional Medical Expenses Act (aw bz), basing its assessment on the criterion of the applicant’s independence at the time of the application. Taking into account the course of frailty in the assessment process has advantages both for older persons themselves and for the government, which administers the aw bz. This study shows that increasing frailty is a good predictor of the use of more intensive aw bz-funded care. Someone who enters a rapid decline will for example return for a reassessment for more intensive care sooner than someone whose health is stable. The ci z has databases from longitudinal research on people’s ‘care careers’, i.e. the successive assessments they have received since first being assessed as eligible for care. A study could be carried out to ascertain which groups of frail older persons could be assessed for lighter forms of care at an early stage based on information on the course of their frailty, in order to prevent or delay the need for more intensive care, such as subsequent admission to a care or nursing home. All things considered … Frail older persons have more than one disease and face associated social problems. At present, however, care for the older population is in principle aimed at addressing single diseases: older persons go to the doctor with a complaint and this is treated using disease-specific protocols; the intervention is reimbursed by the health insurer because this disease-specific approach also applies to the funding of medical care. Complaints which do not fit into a single disease category, such as loneliness and loss of a partner, receive less attention. The result is that frail older persons feel they are not heard and are not always able to tell their doctor all the things that are going on for them. In principle, local authorities also work in a complaint-specific way, and the delivery of provisions for frail older persons is fragmented (De Klerk et al. 2010; Zantinge et al. 2011). Moreover, there is little coordination between local authorities and gps in the care for frail older persons (Oomen 2009). Although there is ample scientific evidence that identifying frailty in older persons is useful, the added value of a broad approach to frailty has yet to be proven through scientifically evaluated interventions. To date, the broad-based approach has been valuable mainly in shifting emphases: from care interventions after the onset of serious health problems to early identification of the problems; and from a complaint-based approach to medical treatment to obtaining an overview of the multiple and social problems faced by frail older persons. The aim is to maintain quality of life, not just to eliminate a specific disease or complaint. Measuring frailty is a means of bringing that goal will within 187


closer reach. Whether this is achievable for all frail older persons is uncertain at present; for those who are at the beginning of a process of increasing frailty (for example following a traumatic life event such as losing their partner), early identification and inter vention can enable them to maintain control over their quality of life for longer.

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v rom/v ws (2007). Beter (t)huis in de buurt. Actieplan Samenwerken aan wonen, welzijn en zorg 2007-2011. The Hague: Ministry of Housing, Spatial Planning and Environment / Ministry of Health, Welfare and Sport. Waal-Saulais, C.R.M. de, M.E. Jacons & J.P. de Wit (2004). De ideale seniorenwoning volgens het seniorenpanel Zuid-Holland. Resultaten van een schriftelijke enquête in de zomer van 2003. Voorburg: Tympaan Instituut. Walston, J. & L.P. Fried (1999). Frailty and the older man. In: Med Clin North Am, vol. 83, no. 5, p. 1173-1194. Wellink, H. (2003). Een beetje meer draagkracht graag: Determinanten van de kwaliteit van leven van mensen met lichamelijke beperkingen (doctoral thesis). Utrecht: Utrecht University. Westerhof, G. & E. Bohlmeijer (2010). Psychologie van de levenskunst. Amsterdam: Boom. w ho Group (1998). whoqol User Manual. Geneva: World Health Organization (Division of Mental Health and Prevention of Substance Abuse). Wilson, R.S., L.A. Beckett, J.L. Bienias, D.A. Evans & D.A. Bennett (2003). Terminal decline in cognitive function. In: Neurology, vol. 60, no. x, p. 1782-1787 Winograd, C.H., M.B. Gerety, E. Brown & V. Kolodny (1988). Targeting the hospitalized elderly for geriatric consultation. In: J Am Geriatr Soc, vol. 36, no. 12, p. 1113-9. Winograd, C.H., M.B. Gerety, E. Brown & V. Kolodny (1991). Screening for frailty: criteria and predictors of outcomes. In: J Am Geriatr Soc, vol. 39, no. 8, p. 778-84. Woittiez, I., E. Eggink, J.J. Jonker & K. Sadiraj (2009). Vergrijzing, verpleging en verzorging: ramingen, profielen en scenario’s 2005-2030. The Hague: The Netherlands Institute for Social Research | scp. Woo, J., R. Chan, J. Leung & M. Wong (2010). Relative contributions of geographic, socioeconomic, and lifestyle factors to quality of life, frailty and mortality in elderly. In: ploS One, vol. 19, no. 5, p. E8775. Woo, J., W. Goggins, A. Sham & S.C. Ho (2005). Social determinants of frailty. In: Gerontology, vol. 51, no. 6, p. 402-8. Woodhouse, K.W., H. Wynne, O. Baillie, O.F.W. James & M.D. Rawlins (1988). Who are the frail elderly? In: Q J Med, vol. 68, no. 255, p. 505-506. w p g (2010). Artikel 5a. Bepalingen over de zorg voor de publieke gezondheid (Bill of public health). Altered proposal of Bill 31316. Upper Chamber, year 2007/2008. Zantinge, E., E. van der Wilk, C. Schoemaker & M. van Wieren (ed.) (2011). De gezondheid van ouderen in Nederland. Bilthoven: National Institute for Public Health and the Environment (r i v m). Zijlstra, G.A.R. (2008). Managing concerns about falls: fear of falling and avoidance of activity in older people (doctoral thesis). Maastricht: Maastricht University.

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public ations of the ne ther l a nd s ins titute for s o ci a l r ese a rch | s cp in english

Publications of the Netherlands Institute for Social Research | scp in English Sport in the Netherlands (2007). Annet Tiessen-Raaphorst, Koen Breedveld. isbn 978 90 377 0302 3 Market Place Europe. Fifty years of public opinion and market integration in the European Union. European Outlook 5 (2007). Paul Dekker, Albert van der Horst, Henk Kox, Arjan Lejour, Bas Straathof, Peter Tammes, Charlotte Wennekers. isbn 978 90 377 0306 1 Explaining Social Exclusion. A theoretical model tested in the Netherlands (2007). Gerda Jehoel-Gijsbers, Cok Vrooman. isbn 978 90 377 0325 2 Out in the Netherlands. Acceptance of homosexuality in the Netherlands (2007). Saskia Keuzenkamp, David Bos. isbn 978 90 377 0324 5 Comparing Care. The care of the elderly in ten eu-countries (2007). Evert Pommer, Isolde Woittiez, John Stevens.isbn 978 90 377 0303 0 Beyond the breadline (2008). Arjan Soede, Cok Vrooman. isbn 978 90 377 0371 9 Facts and Figures of the Netherlands. Social and Cultural Trends 1995-2006 (2008). Theo Roes (ed.). isbn 978 90 377 0211 8 Self-selection bias versus nonresponse bias in the Perceptions of Mobility survey. A comparison using multiple imputation (2008). Daniel Oberski. isbn 978 90 377 0343 6 The future of the Dutch public library: ten years on (2008). Frank Huysmans, Carlien Hillebrink. isbn 978 90 377 0380 1 Europe’s Neighbours. European neighbourhood policy and public opinion on the European Union. European Outlook 6 (2008). Paul Dekker, Albert van der Horst, Suzanne Kok, Lonneke van Noije, Charlotte Wennekers. isbn 978 90 377 0386 3 Values on a grey scale. Elderly Policy Monitor 2008 (2008). Cretien van Campen (ed.). isbn 978 90 377 0392 4 The Netherlands Institute for Social Research | scp at a glance. Summaries of 16 scp -research projects in 2008 (2009). isbn 978 90 377 0413 6 Sport in the Netherlands (2009). Annet Tiessen-Raaphorst, Koen Breedveld. isbn 978 90 377 0428 0 Strategic Europe. Markets and power in 2030 and public opinion on the European Union (2009). Paul Dekker, Albert van der Horst, Paul Koutstaal, Henk Kox, Tom van der Meer, Charlotte Wennekers, Teunis Brosens, Bas Verschoor. isbn 978 90 377 0440 2

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Building Inclusion. Housing and Integration of Ethnic Minorities in the Netherlands (2009). Jeanet Kullberg, Isik Kulu-Glasgow. isbn 978 90 377 0442 6 Making up the Gap, Migrant Education in the Netherlands (2009). Lex Herweijer. isbn 978 90 377 0433 4 Rules of Relief. Institutions of social security, and their impact (2009). J.C. Vrooman. isbn 978 90 377 0218 7 Integration in ten trends (2010). Jaco Dagevos and Mérove Gijsberts. isbn 78 90 377 0472 3 Monitoring acceptance of homosexuality in the Netherlands (2010). Saskia Keuzenkamp. isbn 978 90 377 484 6 The minimum agreed upon. Consensual budget standards for the Netherlands (2010). Stella Hoff, Arjan Soede, Cok Vrooman, Corinne van Gaalen, Albert Luten, Sanne Lamers. isbn 978 90 377 0472 3 The Social State of the Netherlands 2009 (2010). Rob Bijl, Jeroen Boelhouwer, Evert Pommer, Peggy Schyns (eds.). isbn 978 90 377 0466 2 At home in the Netherlands. Trends in integration of non-Western migrants. Annual report on Integration 2009 (2010). Mérove Gijsberts and Jaco Dagevos. isbn 978 90 377 0487 7 In the spotlight: informal care in the Netherlands (2010). Debbie Oudijk, Alice de Boer, Isolde Woittiez, Joost Timmermans, Mirjam de Klerk. isbn 978 90 377 0497 6 Wellbeing in the Netherlands. The scp life situation index since 1974 (2010). Jeroen Boelhouwer. isbn 978 90 377 0345 0 Just different, that’s all. Acceptance of homosexuality in the Netherlands (2010). Saskia Keuzenkamp et al. (ed.) isbn 978 90 377 0502 7 Acceptance of homosexuality in the Netherlands 2011. International comparison, trends and current situation (2011). Saskia Keuzenkamp. isbn 978 90 377 0580 5 Living together apart. Ethnic concentration in the neighbourhood and ethnic minorities’ social contacts and language practices (2011). Miranda Vervoort. isbn 978 377 0552 2 Frail older persons in the Netherlands. Summary (2011). Cretien van Campen (ed.) isbn 978 90 377 0563 8 Frail older persons in the Netherlands (2011). Cretien van Campen (ed.) isbn 978 90 377 0553 9

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