Article
A comparison of service use by people with dementia in two samples a decade apart
Dementia 2017, Vol. 16(1) 96–107 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301215581504 dem.sagepub.com
Claire Gilbert, Jane Wilcock, Ingela Thune´-Boyle and Steve Iliffe University College London, UK
Abstract Investment in improving community-based dementia care is underway in the United Kingdom, but we do not know how well it meets the needs of people with dementia and those who care for them. The aim of this study was to explore the service use and reported unmet needs of people with dementia in two samples recruited a decade apart. We interviewed 122 carers from Central Scotland and London in 2000–2001 and 84 carers from South-East England in 2010–2011 using the same interview schedule. The two samples of carers had similar demographics. The later groups were more likely to be spouses, slightly older, not working, ethnically diverse, have better perceived health and better access to a car. The people with dementia in each sample had similar characteristics and levels of disability. Carers in the later sample reported more met need for activities of daily living, although up to a third were still not getting sufficient help with some activities. Nearly half of both samples reported verbal aggression and nearly a fifth physical aggression, yet most have not received advice on how to manage this. There is a more evident role of the practice nurse (p ¼ 0.01) and less evident use of community nurses (p ¼ 0.0005), psychiatric nurses (p ¼ 0.006) and health visitors (p ¼ 0.0003) in the more recent sample. Keywords caregiver, dementia, general practice, family practice, service use
Introduction In 2012 there were an estimated 800,000 people in the United Kingdom with a form of dementia, and numbers are set to increase (Alzheimer’s Society, 2013a). Dementia costs the UK economy »23 billion per year, twice that of cancer (Alzheimer’s Society, 2013b). The report ‘Dementia: a public health priority’ (World Health Organisation and Alzheimer’s Disease International (WHO & ADI), 2012) recognises dementia as one of the major causes of disability and dependency internationally. Dementia is not only Corresponding author: Jane Wilcock, Research Department of Primary Care & Population Health, University College London NW3 2PF, UK. Email:
[email protected]
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overwhelming for the people who have it, but also for their caregivers and families. Most care is provided by family and other informal support systems in the community and the presence of a carer reduces institutionalisation. However, changing population demographics are likely to reduce the availability of informal carers in the future, and provision of care can result in significant physical, emotional and economic strain on the caregiver. There are currently 670,000 family and friends acting as primary caregivers for people with dementia in the UK (Alzheimer’s Society, 2013c). A European cross-national study (Schneider, Murray, Banerjee, & Mann, 1999) of 288 spouse carers for people with Alzheimer’s disease (the most common form of dementia) demonstrated a high level of burden and mental distress in spouse carers. A systematic review of services providing information and/or advice to people with dementia and/or their caregivers identified a serious lack of studies focusing on the impact of service provision on people with dementia and very limited understanding of how services affect quality of life or neuropsychiatric symptoms. They found 13 studies investigating the effects of services that included information and/or advice as a prominent part of the intervention, none of which were based in the UK. This review identified some support for the value of information provision, but concluded studies are needed to determine the specific elements that are effective (Corbett et al., 2012). There have been studies that have analysed needs and service use among caregivers, such as a survey of 64 UK carers who were concerned about coping with cognitive decline, early diagnosis and getting support from their general practitioner (Nurock & Wojciechowska, 2007). A study of 45 carers in Wales reported that the greatest difficulties lay in coping with the demands on carer’s time and the emotional strain of caring (Cascioli, Al-Madfai, Oborne, & Phelps, 2008) whilst interviews with 152 community dwelling people with dementia and 128 carers showed the greatest unmet needs were for daytime activities, companionship and help with psychological distress (Miranda-Castillo et al., 2010). When searching the literature we were unable to find any studies that identified changes in service use by people with dementia or their carers within the UK over the last decade. Service availability in the last decade has changed. The NHS Plan (2000) boosted investment and led to the National Service Framework for Older People, which promoted earlier recognition for people with dementia, improved access to treatment, specialist services and social care (Department of Health (DoH), 2000a, 2001). In general practice, the Quality and Outcomes Framework for dementia introduced in 2004/2005 is expanded in 2014/2015 to include a new indicator of recording the name and contact details of the carers of people with dementia (National Institute for Health and Care Excellence (NICE), 2013). This is in keeping with recent increased recognition of the role of carers such as through the Carers and Disabled Children Act 2000 (DoH, 2000b) and the Carer’s Equal Opportunities Act (2004), as well as clarification of capacity through the Mental Capacity Act (MCA, 2005) The National Institute for Health and Care Excellence has published national guidance on care for patients with dementia (NICE, 2006 updated 2011) highlighting the rights of carers to receive an assessment of needs and be offered psychological therapy if appropriate. In 2009 the National Dementia Strategy set new standards for dementia care and provided a strategic framework within which local services could improve dementia services, address health inequalities and provide a guide to the content of high-quality services for dementia (DoH, 2009). Building on this, the Prime Minister launched the Dementia Challenge in 2012, setting out plans to go further and faster in improving dementia care, with a focus on raising
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diagnosis rates and improving the skills and awareness needed to support people with dementia and their carers (DoH, 2012). Clearly, there has been significant work undertaken to improve quality of life for people with dementia and their carers and much has been achieved, but Dementia 2012 shows that at present people are still not living well with the condition (DoH, 2012). In this paper, we aim to explore how service use of carers for people with dementia recruited a decade apart compares and to assess their remaining unmet needs.
Method Thirty-five family practices were recruited in 2000–2001 in central Scotland and in London and 21 family practices in urban and rural South East England (Metropolitan North London, Essex, Hertfordshire and Bedfordshire) were recruited in 2010–2011. These family practices identified patients diagnosed with dementia where there was a carer by the following process (Downs et al., 2006): (1) Patients with diagnosed or ‘probable dementia’ of any kind in the opinion of the GP and/or a specialist were identified by the GP. (2) Carers giving a substantial amount of unpaid care on at least a weekly basis, as defined by The Carers (Recognition and Services) Act, 1995 were identified by practice. (3) Documentation on whether the carer was aware of the diagnosed or probable diagnosis of dementia was done by practice. Carers were excluded if their GP felt that approaching them would be inappropriate for medical reasons. One hundred and twenty-two carers were recruited and interviewed between 2000 and 2001. Eighty-four carers were interviewed between 2010 and 2011. Consent for interview was obtained from the carers following Medical Research Ethics Committee approval which was granted by Southampton Ethics Committee (reference 09/H0502/77). The two samples in this study are part of a randomised controlled trial in the evidencebased interventions in dementia (EVIDEM) programme (Iliffe et al., 2010). The two randomised controlled trials (Downs et al., 2006; Iliffe et al., 2010) were undertaken a decade apart and aimed to test the effectiveness of different educational interventions in improving knowledge and skills in the identification, diagnosis and management of dementia. Carers’ accounts of their encounters with family practice in the first sample have previously been published, but at that time did not include analysis of specific service use (Downs et al., 2006). Summary descriptive statistics of the sample characteristics including frequency counts, mean and median averages were obtained using SPSS version 20. Demographic data for both the carers and people with dementia, and service use differences were analysed using a one-tail chi-square analysis or Fisher-exact analysis for sub-samples less than five using OpenEpi version 3.01 (see Tables 1 and 3). Three services identified as showing significant differences between the two samples were analysed using a logistic regression. In order to determine variables that may predict change in service use we performed binary linear regression analyses using the 2010–2011 sample’s data. Service contacts (with practice nurses, district nurses and community psychiatric nurses (CPNs)) were used as the dependent variable in three separate analyses. Independent variables were identified from
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Table 1. Demographics of carers and people with dementia. Carer demographics Number Gender Age Relation to person with dementia Carer for anyone other than person with dementia Marital status
Employment status Education status
Ethnicity Carer health
Long-standing illness Accommodation Car availability Person with dementia’s demographics Gender Age Education
Ethnicity Accommodation
Female Male Median and range (years) Spouses (husband / wife/partner) Non-spouses
Married/co-habiting vs. single/widowed/ divorced/separated Working Not working Age (in years) when finished full-time education White Non-white Good/very good vs. fair/poor /very poor Yes No Owner occupied Not owner occupied Yes No
Female Male Median Range Age (years) when person with dementia finished full-time education White Not white Lives in own home Not living in own home
2000–2001 (sample 1)
2010–2011 (sample 2)
122 86 (70%) 36 (30%) 60 28–93 42 (34%)
84 63 (75%) 21 (25%) 65 36–88 41 (49%)
80 (66%) 23 (18.9%)
43 (51%) 23 (27.4%)
93 (76%) 29 (23%)
72 (86%) 14 (15%)
0.10
48 (39%) 74 (61%) Median 16 (range 12–29)
21 (25%) 63 (75%) Median 16 (range 13–29)
0.02
121 (99.2%) 1 (0.8%) 26 (21.7%)
79 (94.0%) 5 (6.0%) 52 (62.7%)
0.02
94 (78.3%) 72 (60%) 48 (40%) 96 24 82 (68.3%) 38 (31.7%) 2000–2001
31 (37.3%) 56 (67.5%) 27 (32.5%) 74 9 75 (89.3%) 8 (9.5%) 2010–2011
83 (68.0%) 39 (32.0%) 84 73–95 Median 14 (range 12–25)
44 (52.4%) 40 (47.6%) 83 57–97 Median 15 (range 11–18)
121 (100%) 0 105 (86.8%) 16 (13.2%)
77 (91.7%) 7 (8.3%) 79 (94%) 5 (6%)
p 0.24
0.02
0.07
