Enriching opportunities for people living with dementia: The

Aging & Mental Health, July 2007; 11(4): 371–383

ORIGINAL ARTICLE

Enriching opportunities for people living with dementia: The development of a blueprint for a sustainable activity-based model

DAWN J. BROOKER & ROSEMARY J. WOOLLEY University of Bradford, UK

(Received 22 December 2005; revised 12 June 2006; accepted 25 July 2006) Abstract The aim of this paper is to describe the process of building a multi-level intervention called the Enriched Opportunities Programme, the objective of which is to provide a sustainable activity-based model for people with dementia living in long-term care. It is hypothesised that five key elements need to work together to bring about a sustainable activity-based model of care. These elements are specialist expertise – the staff role of Locksmith was developed as part of this programme; individualised assessment and case work; an activity and occupation programme; staff training; and management and leadership. These elements working together are known as the Enriched Opportunities Programme. This paper reports on the processes undertaken to develop Enriched Opportunities from its inception to the present, and focuses on lessons learnt from the literature, an expert working group and action research in four UK study sites. A blueprint for evaluation in other long-term care facilities is described.

Introduction Many practitioners in the dementia care field see activity and occupation as central to promoting well-being for people with dementia. Activities for people with dementia can be therapeutic, enhance quality of life, arrest mental decline, and generate and maintain self-esteem (Marshall & Hutchinson, 2001). Activities can also create immediate pleasure, re-establish dignity, provide meaningful tasks, restore roles and enable friendships. The National Minimum Care Standards for Care Homes for Older People (Department of Health, 2001) states that service users, particularly those with dementia, should have opportunities for stimulation through leisure and recreational activities which suit their needs, preferences and capacities. Nevertheless, the practical issues of working with people with dementia in nursing homes and extra care housing in a way that promotes activity, achievement and well-being, remain unclear and improvements are difficult to sustain over time. Although there is growing consensus that individually based and multifaceted interventions are likely to be most efficacious (e.g. Cohen-Mansfield, 2005; Margallo-Lana et al., 2001; Moniz-Cook, Woods, Gardiner, Silver, & Agar, 2001), there is little guidance for how these might work as part of regular care.

Members of our research and development team have worked together with a care provider organisation since 1998, initially on staff training issues and assessment and on the evaluation of innovative practice. The starting point for the Enriched Opportunities Programme was whether it was possible to achieve the elevated levels of well-being that we had seen during a small scale evaluation (Brooker, 2001) for people with dementia as part of regular nursing home care. The past three years has seen a process of research and development to build the Enriched Opportunities Programme into a practical working model. There were a number of processes that we used, including: 1. a review of the published literature 2. an Expert Working Group 3. action research in four practice development sites. The Enriched Opportunities Programme was subjected to a within-subjects repeated measures evaluation in three specialist nursing homes and one extra care housing scheme, the outcomes of which are reported elsewhere (Brooker et al., in press). This paper reports on the process of the development and the resulting blueprint for long-term care facilities.

Correspondence: Professor Dawn Brooker, Bradford Dementia Group, School of Health Studies, University of Bradford, Unity Building, 25 Trinity Road, Bradford. BD5 0BB, UK. Tel: 01274 235726. Fax: 01274 236395. E-mail: [email protected] ISSN 1360-7863 print/ISSN 1364-6915 online/07/040371–383 ß 2007 Taylor & Francis DOI: 10.1080/13607860600963687

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Methods The literature review The published literature was reviewed throughout the development of the programme. Searches were made of relevant databases such as Medline, CINAHL and Cochrane with regard to key terms such as dementia, activity/occupation, therapy, and long-term care/homes. Similarly, key journals were hand searched. Further references were followed up from articles obtained. The Expert Working Group (EWG) This group guided the development of the Enriched Opportunities Programme. It was a four-way forum for discussion and action between the research team, the practitioners (key operational staff) in the four practice development sites, family carers and a group of thirty experts from a variety of professional, therapy and training perspectives in dementia care. Collectively, this forum was known as the Expert Working Group (EWG). All members were invited to use their expertise from practice and research in order to shape the Enriched Opportunities Programme from a theoretical ideal into a usable intervention within long-term care. An initial twoday residential meeting of the Expert Working Group was held and the recordings of presentations and ensuing discussions of this first meeting were transcribed to help guide the project (Brooker & Woolley, 2003). A further five EWG meetings were held in this advisory capacity over the course of the development. All meetings were recorded and notes made for analysis. Between times, individual members of the EWG provided training and mentorship to the four practice development sites. Action research The remit of the research was to capture the processes and outcomes of the Enriched Opportunities Programme on people with dementia, their family carers and staff in the four study sites. The evaluation adopted a case study design (Robson, 1993) combining qualitative and quantitative research methods and action research. The case in this evaluation can broadly be viewed as the innovation i.e. the development of the Enriched Opportunities Programme. Action research was integral to the case study approach, as the innovation required action with collaboration between the researchers and practitioners and the EWG in order to achieve both the developmental and research objectives. Four practice development sites participated; three dementia specialist nursing homes and one extra care housing scheme. All three nursing homes were registered EMI homes. In total, 127 people residing within these nursing homes participated in the programme. The extra care housing scheme

practice development site had apartments for 86 tenants with 18 tenants participating in the programme. A fuller description of the facilities and outcomes of the intervention in the nursing homes are reported in a companion paper (Brooker et al., 2007). A series of focus groups were held for staff, relatives and volunteers. Thirty staff focus groups, seven relatives groups and six volunteer groups were held in all, ranging in size from 3 to 12 participants. In addition to obtaining general feedback, the aim of the groups was to help draw out ideas that had been effective in promoting well-being and to explore remaining obstacles to change. Notes were written afterwards, and each focus group meeting was recorded then transcribed for analysis. ‘Locksmiths’ and practice development site managers were interviewed individually at three points to help capture the processes and enhance understanding of their roles. A semi-structured interview schedule was followed so that similar questions were asked at each site at parallel research stages, but issues specific to each could be followed up. The interviews were recorded and subsequently transcribed for analysis purposes. In addition, in-depth case studies were completed on five residents in each of the nursing homes. In the extra care housing scheme, in-depth case studies were undertaken on all of the tenants who had participated. The Locksmith, staff members, relatives and wherever possible the participant themselves were involved individually in this process. The transcripts from the focus groups and interviews were read and re-read on a number of occasions by the authors. These were analysed to identify the perceptions around four broad themes and to develop sub-themes from these: 1. how people felt about the Enriched Opportunities Project 2. what life was like for residents/tenants 3. what were identified as barriers to leading an enriched life 4. what was identified as facilitating leading an enriched life The qualitative data was analysed as a whole and differences and similarities between the study sites were explored. The results were then discussed with the project team and the EWG. Two in-depth reports were produced to set out the experience as a whole – one focusing on the nursing home sites and one on the extra care housing scheme.

Results Enriched Opportunities for People with Dementia had as its premise that elevated well-being for people with dementia is desirable and, that given the right conditions, is obtainable and sustainable. It was

Enriching opportunities for people living with dementia hypothesized that five key elements needed to work together to bring about a sustainable activity-based model of care for people with dementia living in long-term care. These elements, described in detail below, working together were known as the Enriched Opportunities Programme. The quotes used in this section are illustrative. Element 1 Specialist expertise: the Locksmith Specialist expertise can improve staff management of problem behaviours (Moniz-Cook et al., 1998, 2001; Opie, Doyle, & O’Connor, 2002; Chung & Lai, 2002), levels of resident depression and cognitive impairment (Proctor et al., 1999), general clinical practice (Hoek, Ribbe, Hertogh, & Van Der Vleuten, 2003; Rantz et al., 2001), and in reduced use of medication (Ballard, O’Brien, Reichelt, & Perry, 2002; Rovner et al., 1996). As part of the Enriched Opportunities Programme it was decided to develop a senior staff role called a Locksmith who was internal to the team, whose raison d’eˆtre was to ensure residents and tenants reach their potential for well-being. The title ‘Locksmith’ was chosen to reflect their central responsibility in discovering and developing keys that would unlock the potential for well-being in individuals with dementia. Locksmiths also required the authority to take a lead in staff training and mentoring with regard to the Enriched Opportunities Programme. All Locksmiths were employed full-time as part of the senior team and as such had authority to lead staff and to challenge decisions. (The Locksmith person specification is available from the author on request.) The Locksmith was pivotal in bringing the Enriched Opportunities Programme to life. The staff team commented on the usefulness of having someone they could use as a resource and someone to offer leadership. ‘‘Having the Locksmith, it’s somebody who, you know if you can’t think of an activity somebody can come back to you with a different idea, so you can try that to get a bit more of a variety and if it’s something you’re not sure about, either it’s nice having the Locksmith there you can go down to see him and that makes a big difference.’’ ‘‘She tries to get us motivated more as well doesn’t she? She will come into the lounge, you know, you can do, get it done, you know kind of thing and she’s, she’s not forceful but she’s practical at getting things working . . .’’ Through the project, a number of themes developed about the Locksmith role. This job would not have been possible without an absolute commitment to the belief that people with dementia are entitled to and able to, enjoy life. One Locksmith commented: ‘‘I really believe in it. I mean, I really, really passionately believe in kind of valuing the lives of

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people with dementia and doing what we can to kind of . . . to improve people’s lives, I suppose.’’ Having specialist knowledge of the needs of people with dementia was important for the Locksmiths both for their own confidence and in order for them to be a role-model and resource for other staff. Comments from the Locksmiths included: ‘‘You’ve got to go in there and you’ve got to lead it. Show them that it’s not a myth and you know, nothing. We’re not asking them to do wonderful things getting them leaping up and down the corridors singing and dancing.’’ The Locksmiths also highlighted communication and person-centredness. Locksmiths needed strong organisational skills. They needed to have a handle on a wide variety of knowledge – knowing their residents, staff, assessments, making and sustaining links with the local community – there was a huge amount of information to process on all these levels. Locksmiths needed to be able to motivate themselves – they were the only person in the establishment employed in this role and they needed to be strong enough to withstand the pressure of the specialist role being eroded. ‘‘Cos if I was the kind of person who just accepted . . . if I was the kind of person who did what they were told and accepted what they were told and did what I was supposed to be doing, according to whoever, then I wouldn’t have got to the point where I am now.’’ The management staff saw the Locksmith as a pivotal figure and particularly commented on their ability to challenge. A manager commented: ‘‘I do feel very strongly that they have to be assertive, they have to be pushy. Not just in their links with me, but in how they relate to other members of staff as well, who are busy and perhaps haven’t got the time and all this sort of stuff. So they really have to be assertive characters, I think, and pretty thick-skinned characters as well, solid characters.’’ Element 2: Individualised assessment and case work The needs of people in long-term care are many and varied. Individualised assessment and analysis sets a basis from which interventions can be designed, for both enhancing well-being by appropriately matching activity and occupation to persons with dementia, or reducing disturbed mood or behaviour (Cheston, 1998; Verkaik, Van Weert, & Francke, 2005) and for determining individualised care plans (Turner, 2005). The aim was to identify types of occupation and activity that were the most likely keys to unlock the potential for well-being. The core elements of the assessment are described in Table I.

What is this person like? What motivates them? What influences their mood?

What happens in the home that brings this person to life? What delights them?

Personality

Current interests

Life history

How does this person think? How do they communicate? How do they relate to the world? How do they relate to objects? What are experiences from the persons past that could hold clues to improving and maintaining well-being now?

Cognitive ability and engagement capacity

Questions that are asked

This provides the establishment of everyday opportunities that can bring real joy.

This provides clues as to what activities will be familiar and enjoyed. Also what objects could trigger positive memories and actions. This provides clues as to what the person enjoys and doesn’t enjoy.

This helps in planning the level that a person can engage with activities and what type of support they will need.

Why is this important?

Summary of the Enriched Opportunities Programme assessment process.

What is the Locksmith looking for?

Table I.

Magic moment cards key cards

Well- and Ill-being Profile likes and dislikes and routines checklist.

Life story books and life boxes.

Milestones Assessment of capacity for engagement and cognitive ability. (May & Edwards, in press)

Tools that were helpful

Completed with person themselves or sometimes family members. Reading and sifting through existing information. Completed by Locksmiths’ own observations and by discussion with key worker and family. These were developed as part of the programme and completed by staff and Locksmiths.

Filled out through observation of the resident in every day situations.

How was this used?

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Enriching opportunities for people living with dementia The assessment process was low-key and non-stressful for participants. It involved the Locksmith reviewing existing information, observing the participants in many situations, talking to participants, families and staff. None of the Locksmiths carried out formalised pen and paper assessments directly with the residents – although all had some of these in mind when making their assessments. This process was individualised and continuous. The Locksmiths commented on seeing things from the point of view of the service user as this quote illustrates: ‘‘I think my whole understanding and my practice, my skills, have vastly changed from this idea that we really want people with dementia doing what we’re doing . . . or stuff that looks good for us. And saying, ‘Well, okay, what we really, really need to do, the real nitty-gritty, is to get alongside people, really understand where they’re coming from and then try to work round that. And connect with that.’’ ‘Magic moment cards’ were used by all staff if they spotted an activity or a trigger that appeared to enhance the well-being of an individual to a significant extent. These triggers could then be investigated further by the Locksmith, to see if they could be turned into a ‘key-card’. Key cards were ideas that had been found to work in a consistent way to bring pleasure to individuals. There were many staff comments on how useful aspects of the assessments had been for individuals and how the findings were incorporated into everyday activities: ‘‘Just having those (magic moment) cards, I mean in lounge four the other day the gentleman that does a lot of shouting he was looking through a magazine and he sort of came out with two words you know, and I though oh my gosh, you know, I’ve never heard him speak like that before, you know, so you write that down on a magic moment card, you know, but it’s one of those things.’’ There had been a well established practice of Life Story work in most of the nursing home sites. The idea of developing these into ‘Life-Boxes’ which contained objects and pictures that had meaning to participants, that staff could use to help maintain a positive identity for the participant, developed as part of the programme. One member of staff commented: ‘‘The Life Boxes help don’t they because they’ve all got something in their life box? So we’ve learned new stuff where they’ve got . . . and that’s good if you’re on a different House Group and residents you’re not familiar with.’’

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Element 3: Activities and occupation There are an increasing number of structured or therapeutic activity-based interventions that have been utilised with people with dementia, on both group and individual bases, with a wide range of aims. These include reality orientation (Spector et al., 2000a, 2000b); cognitive stimulation therapy (Orrell, Spector, Thorgrimsen, & Woods, 2005); reminiscence and life review (Woods et al., 2005; McKee et al., 2005); music therapy (Aldridge, 2000; Sherratt, Thornton, & Hatton, 2004a); art, writing, dance and movement (Allan & Killick, 2000; Coaten, 2001); drama (Batson, 1998; Chaudhury, 2003); aromatherapy and sensory stimulation (Ballard et al., 2002; Holmes et al., 2002; Smallwood, Brown, Coulter, Irvine, & Copland, 2001); Multi-Sensory gentle stimulation (Snoezelen) (Baker et al., 2003); intergenerational programmes (Jarrott & Bruno, 2003); Montessori-based methods (Camp & Skrajner 2004); doll therapy (James et al., 2005); the SPECAL approach (Garner, 2004); emotion-oriented care (Finnema, Droës, Ribbe, & Van Tilburg, 2000; Finnema et al., 2005); horticultural therapy (Gigliotti, Jarrott, & Yorgason, 2004) and woodlands therapy (Pulsford, Rushforth, & Connor, 2000). The research evidence for most of these activities appears weak (see reviews by Beck, 2001; Cohen-Mansfield, 2005; Gitlin, Liebman, & Winter, 2003; Marshall & Hutchinson 2001; Sherratt, Thornton, & Hatton, 2004b; Thorgrimsen, Spector, Wiles, & Orrell, 2004; Verkaik et al., 2005). Nonetheless, from a practice perspective, seeing someone light up with delight when engaged in an activity that has meaning for them, indicates that this is a worthwhile endeavour. It is applying occupation and activity as part of regular care practice that poses the real challenge. The EWG identified that the programme of activity should be rich, integrated with the local community, variable, flexible and practical to provide opportunity for vulnerable individuals to experience optimum well-being. There was consensus that the provision of activities and occupation were the responsibility of the whole staff team not just the Locksmith. The key components and the different roles of the team are shown in Table II. Staff remarked on the difference that knowing more about their residents helped with their everyday interactions, that their care was more person-centred than task centred. ‘‘If you can empathise with the resident and put yourself in that resident’s shoes – how must they be feeling? They have been sat in that chair all day, they have not moved. How do they feel? How would I feel if I’d been there? If you can put yourself in their position then you can do the job properly.’’

Assesses what works with whom. Devises key cards. Communicates to all team. Monitors its implementation. To assess what is needed, to maintain its use, safety and security. Organises and liases with appropriate places and people. Assesses suitability.

Maintains well-being on a day to day basis.

To support the individual and group activities. Maintains feeling part of the world, empowers to continue everyday activities, fresh air, excitement and fun.

Individualised simple and fun activity and occupation that can occur everyday Communal space and equipment Getting out of the facility

Models this in all interaction, can explain its importance to all.

Meets psychological needs of vulnerable people. Overcomes exclusion.

General good quality person-centred care

Locksmith role

Function

Core components of the enriched activity programme.

Core component

Table II.

To use equipment and props imaginatively and safely on a day to day basis. Provide one-on-ones where necessary. Risk aware.

Positive attitude towards and empathy with residents/tenants. Low number of personal detractions. Carries this out on a one-to-one with identified tenants/residents or in small groups.

Staff role

Provide staff resources and planning support.

To provide resources and space.

To give priority to this in workload planning and scheduling.

Recognition and reinforcement of person-centred care practice.

Management role


Enriching opportunities for people living with dementia ‘‘. . . even though they can’t talk you can tell. Their eyes are fixed on you and they’ll smile or they’ll be far more relaxed when you’re doing something. But to be honest, even the most impaired we get some kind of feedback from them.’’ The Locksmith needed to work out everyday activities that would maintain and sustain well-being for each individual participant. This needed to be something that staff could work on with participants as part of the everyday routine. ‘‘We have one woman that spends a lot of times in the rooms, and we know from her family that she used to listen to classical music. Now because we’re playing that a lot, this lady, we’re getting so much more response. She’s smiling, she’s happy, she’s laughing. And we haven’t had that for a long time – and it’s lovely. It’s really lovely.’’ ‘‘We’ve actually got a bottle of Tia Maria, and sherry, so she’s having a tipple with her meals, and it’s lovely – she enjoys it. And her chocolate. So even though we’re not doing a LOT with her down here in the main lounge, she is getting more one-to-one attention. She’s getting something she likes listening to, she likes a drink, and a lot of touchy-feely.’’ ‘‘It is the simple things, it is like last week they had a snowball and put it in front of Bill (resident) and he picked it up and was passing it round, that is an activity. It is sensory, it’s . . . whereas if somebody comes in and says, ‘‘you bake a cake’’, what reaction are you going to get?’’ ‘‘With Elsie who’s so difficult to engage . . . with the balloons, she loves knocking balloons around. I mean she’s just like plus 5, plus 5, plus 5 (exceptional well-being). And once you stop knocking it around she’ll kind of hold on to a balloon and use it in a sensory way, so it’s brilliant.’’ All Locksmiths used a lot of objects in their work. These were either reminiscence-type objects that people enjoyed handling or using, or objects like the balloons that people could have fun with. There was also the more specialist equipment such as massage cushions or craft material that some people found beneficial. A member of staff described using various props to help one of her residents: ‘‘I mean Bob, he can’t communicate, he just shouts; he can’t say any words at all. But if he likes an activity that we’re doing with him he usually grins at you. So, you sort of read his body language that way. He likes hats. Different hats just keep changing the hats. Or he likes reading gardening books, sports. So we know really by his body language. We read his body language that he’s enjoying the activity that he’s doing.’’ The main groups of people that were important to engage with the Enriched Opportunities Programme

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are summarised in Table III. Staff commented on the interest generated by outside therapists and entertainers. ‘‘On St Patrick’s Day we had two Irish Dance girls in and the reaction from some of the residents was lovely. And we did a proper Irish meal and oh it was really nice. The relatives came in and they enjoyed it – the residents enjoyed it. They love live action stuff – close stuff.’’ Working with local community mental health teams was well established already in the practice development sites. Had this not been the case, this would have been a bigger role for the Locksmith. In terms of specialist expertise, the Locksmith is ideally placed to engage with specialists outside the facility, whilst also being able to implement and monitor advice and suggestions. Element 4: Staff training Lack of staff knowledge or skills is often highlighted as a reason for interventions not achieving positive results (e.g. Ballard et al., 2002: Turner, 2005). The value systems, knowledge and skills of staff are fundamental to providing good quality care for people with dementia. There is evidence that short focused training courses (1–5 days) increases care teams’ confidence and knowledge in working with older people (Lintern, Woods, & Phair, 2000a; Mayall, Oathamshaw, & Pusey, 2004; Moniz-Cook et al., 1998). Although all these studies showed a positive impact on staff knowledge, none of them managed to demonstrate a significant impact on the clients that the staff were caring for. The EWG emphasised that all staff, particularly those with greatest participant contact, needed to have the necessary skills to support the Enriched Opportunities Programme. There was no prescribed training at the commencement of the Enriched Opportunities Programme. Part of the Locksmith and managers’ role was to use the Expert Working Group to assess what training would help them deliver the programme. From the interviews and focus groups, all agreed that training had to change hearts and minds and provide the skills and attitude necessary to deliver the Enriched Opportunities Programme. Training should be accessible, fun, practical, and based on examples from practice with the client group. There was a strong commitment that the whole of the staff team should be trained in the core approach and that this staff training should also act as a team building exercise. The core content of training for all direct care staff should include: . Mental health awareness – Knowledge and awareness about mental health and cognitive impairment in later life and how it affects people. . Person-centred approach – Valuing all people and understanding their perspective, team building.

Involvement with local mental health team or specialist statutory services

Working with families

To ensure that health and well-being is maintained at the optimal level.

Maintains feeling part of the world and excitement. Brings in expertise that is not present in the staff group e.g. dancing, aromatherapy. Brings in time and expertise that might not otherwise be available. To ensure key relationships are maintained and that family expertise is fully utilised.

Outside therapists and entertainers

Working with volunteers

Function

Involving others in the Enriched Activity Programme.

Core people & agencies

Table III.

Organises roles for volunteers, supervision and support. Forms relationship with key family members to facilitate life story work and ensure personal preferences are known. Liaison with health and social care professionals if problems with significant deterioration.

Organises and liases with appropriate places and people. Assesses suitability.

Locksmith role

To be alert to worsening confusion or depression.

Ensure tenants/residents are prepared beforehand and supported to get the most out of the therapy or entertainment. Ensure volunteers are welcome and be clear of their role. Be welcoming of family carers and share care where possible.

Staff role

To facilitate good relationships with local teams.

Oversee the engagement and supervision of volunteers in the home. To model and facilitate the involvement of family carers in the general life of the home.

Provide staff resources and planning support.

Management role


Enriching opportunities for people living with dementia . Communication – Effective communication with each other and with residents, observation skills of non-verbal communication. It was recommended that selected direct care staff should receive training on specific activities and creative therapies to enable them to participate more freely in fun activities with residents. The following comments on training illustrate its power to create a new way of looking at their work even for staff who had been employed for many years: ‘‘It gives you more confidence as well and you looked at it in a different way. You may have looked at it in that way before but it feels different now.’’ One of the study practice development sites took a different approach to training and invested in two 3-day training courses with their mentor from the Expert Working Group on Essential Lifestyle Planning (Smull & Sanderson, 2005). This was an intensive experiential course, with its roots in learning disabilities services, that all staff attended. Initial feedback was extremely positive and, at the final focus groups and interviews, the impact the training had had on staff was in no doubt. Staff commented: ‘‘You couldn’t not be affected by the course itself because the course was very emotional. We all came out of it feeling totally changed towards everybody, you know, you see everybody, even the children and your own relations, people on the street, I see them totally different now to what I did before. You know, so it was very powerful in itself, wasn’t it?’’ Element 5: Management and leadership The organisational, professional and management context is particularly influential on dementia care and is crucial to effecting and sustaining change (Cody, Beck, & Svarstad, 2002; Lintern, Woods, & Phair, 2000b). However, there is little research to tell us about managers in dementia care or on the specific leadership qualities and management skills that will have a positive impact on the lives of people with dementia (Cantley, 2001). Poor leadership has consequences for staff in terms of demoralisation, burnout and stress, lower work satisfaction or job clarity, lower psychological wellbeing and high workforce turnover (Cole, Scott, & Skelton-Robinson, 2000; Moniz-Cook et al., 1997, 2001). Staff burnout has been shown to be associated with less willingness to help residents, low optimism and negative emotional responses to their behaviour (Todd & Watts, 2005). With many care environments still emphasising primary fulfilment of a custodial function, it is unsurprising that staff often feel unable to provide therapeutic

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activities for their residents (e.g. Pulsford, 1997). By its nature, management is a dynamic process and it is this area more than any other where it is difficult to be prescriptive. Themes that emerged from the EWG and the focus groups and interviews were: . Change management – taking the whole organisation from task-focused to Enriched Opportunities Programme-based care. . Ownership at the highest level – given the list of competing demands this would have to be prioritised at Executive Board level and at local management levels if it were to become embedded practice. This programme had, leadership from the highest level within the organisation and a clear directive that it should be a priority area to be developed. . Open and inclusive management style – this enables front-line staff to be responsive to changing needs of residents. Both Locksmith and care staff need to feel that they contribute to decision-making and to productive work with the residents. . Seniority and authority of Locksmith – this was essential for giving the programme status and enabling Locksmiths to fulfil a leadership and mentorship role. The leadership function of the Locksmith was acknowledged from the start with the Locksmith being employed as one of the senior team with a salary commensurate with that position. . Supervision and mentoring for Locksmith – from its inception the EWG was very active in its support and guidance. All Locksmiths valued having support and mentorship from the Expert Working Group. This ‘arms length’ supervision element was important for Locksmiths and is something that may need to be in place given the complex nature of the work. Locksmiths also had to have the skill at seeking out and using this support. All Locksmiths reported a dual need both to feel supported by the manager of the facility but also to have the authority of being a senior member of staff. This presented a challenge for management. One manager commented: ‘‘On the one hand you’re trying to drive the project forward, keep the profile, all the rest of it. You’re trying to encourage support, the perception that the Locksmith is senior and all the rest of it. But you’re trying to encourage the Locksmith to get in at a very low level, very basic level, handson level, you know, not to become elitist, not to be seen just as another activity organiser, not to be seen as just an extra member of staff in the social club. So yeah, you’ve ‘gotta guard against all those dangers as you go along. And that’s not easy sometimes. Not easy.’’

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Another manager of one of the homes emphasised the necessity for regular communication between the Locksmith and the manager: ‘‘I think there needs to be a structured period of . . . supervision. You need to have that important linking together, whether it be just for an hour or an afternoon together to work on something. But invaluable I would say, keep your Locksmith onboard, keep you onboard, work together at the team . . .’’ Part of the reason that the Enriched Opportunities Programme remained high on the management agenda was the fact that it was a research project and that a lot of attention was focused on the results. The challenge is how Enriched Opportunities maintains management focus without this. The idea of having a senior coach specifically identified within the organisation who could mentor the process at a management level and provide some of the arms length supervision to the Locksmith was seen as a possible solution to keeping the focus on this programme once the research phase has ended. By and large there was recognition at final measures that the management and organisation of care meant that staff felt proud to part of a cuttingedge organisation. This is a positive spin-off for management who want to improve job satisfaction and retain staff. One member of staff said: ‘‘Compared to other places I’ve worked the residents seem more happy here than anywhere else I’ve worked. And the staff seem to know them better as well; they know them as individuals and not as a resident or a problem, or whatever.’’ The EWG thought there needed to be an external recognition through the inspection process of the impact of this work on the lives of very vulnerable residents, if it were to be maintained in the long term. It has already achieved positive spin offs for inspections, particularly in one nursing home when the manager was describing their latest inspection: ‘‘It was absolutely fantastic, she said, yeah. She’d met with the residents, she met with the staff, she met with the volunteers, she’d looked at our paperwork and she just couldn’t believe how good it was. She just said, ‘‘What I’m actually measuring now for my documentation is just so trivial.’’ You know, she said, ‘‘I don’t really think that this is probably going to be appropriate for here.’’ Challenges There are a number of challenges that remain about the Enriched Opportunities Programme.

Involving family carers in the process of Enriched Opportunities was something that was seen as an important aspect from the outset and something that requires further development. As with engaging family members, working with volunteers was an aspect of the programme that required further work. There was a wish for more volunteers to spend more one-on-one time with people with dementia. There was a theme about ensuring that management and staff teams shared the same vision for the programme. There were still concerns at the end of the intervention that the emphasis on activity meant that some of those with more advanced dementia might be given inappropriate things to do. One of the challenges in the extra care housing scheme was ensuring that those on the Enriched Opportunities Programme were not stigmatised. This quote from the Locksmith about how tenants viewed her, suggests this was achieved although the mechanisms for this need clarifying. ‘‘They just see me as a staff member, it’s, I have to say I’m amazed at the amount of people that haven’t actually said, ‘‘What do you do?’’ Because I think that’s all to do with the approach I had at the beginning, that I worked with the staff team, I went on the floor as a carer. They see me as an office person, because I’ve been in the office doing paperwork and stuff, so nobody’s quite sure, I don’t think. And they’ve never tackled me as ‘‘Why, why are you here? Why you do the things with us?’’ I just say, ‘‘I’m here and I’m doing all the fun things.’’ And I have made it fun.’’ The manager commented on how it appeared to visitors: ‘‘We’ve had some visitors here this morning and we’ve been down there. And the one visitor did ask about dementia and how we cope, you know, but he wasn’t aware that there was anybody in that group who was part of a project group who had been, who’d got dementia or, you know, just a total integration, merger, nothing stood out. And it wasn’t introduced as anything special, you know, this is an ordinary Thursday at Maple Court and this is an ordinary range of activities that are going on.’’ One of the major challenges was in helping the team deal with competing priorities on their time. Staff were aware of competing demands and sometimes felt unclear about their priorities. Lack of staff time was mentioned at all stages of the project and in every facility as being a barrier to achieving fulfilled lives for people with dementia. It is a long day, it is a long day, there are not enough hours in that day to try and fit everything in that you would like because it is just a routine isn’t it?

Enriching opportunities for people living with dementia Discussion During this research and development we identified an evidence base for all of the elements of the Enriched Opportunities Programme. Many lessons have been learnt from the literature, the expert working group and the action research about the provision of the Enriched Opportunities Programme. As a result of this work we now have a much clearer idea of what the different elements of the Enriched Opportunities Programme look like in practice. It has moved from a theoretical ideal to a practical working model. We have a clear idea of the assessment process, the provision of activity and occupation, the person specification and job description of the Locksmith, the role and responsibilities of the Locksmith, the staff team and the management team, staff training needs and issues to do with management and leadership. The strength of The Enriched Opportunities Programme lies in the triangulation of evidence for each element of the programme from the published literature, expert opinion and from feedback from practice. Its limitations lie in its possible narrowness of focus – in that it could be argued that each evidence base was significantly contaminated by the other. The other major weakness is the enormous Hawthorne effect in this type of research. It could be argued that had any care provider found themselves under such scrutiny from the EWG, that this in itself would have radically changed practice. This evaluation was carried out with a care provider that already has in place a number of elements that would be seen as markers of good practice. Whether this model is transportable to other providers with more variable standards of care is a question that requires further research. Research methodologies for understanding the impact of multi-level interventions such as this are not straightforward. There are many variables to do with the micro-environment of a care facility that can strongly affect outcomes in this area. One of the problems with researching a multi-level intervention is being able to ensure that it is carried out in a standardised and uniform manner. In this current evaluation we set out the broad parameters of the Enriched Opportunities Programme as described by the EWG and collected qualitative data to help build the optimal programme. We now have a clearer intervention that could be applied in a number of service settings within a more rigorous research design to test its efficacy.

Acknowledgements Thanks to all the residents, tenants and staff at ExtraCare Charitable Trust who gave so generously of their time. Thanks to all those in the Expert

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Working Group who shaped and guided this development.

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