Disability & Society, Vol. 16, No. 3, 2001, pp. 377–392
What Does it Mean to Listen to People with Dementia? D. REID, T. RYAN & P. ENDERBY Institute of General Practice and Primary Care, Community Sciences Centre, Northern General Hospital, Shef eld, S5 7AU, UK
ABSTRACT A total of 19 people with dementia were interviewed as part of a study into unmet respite care need amongst caregivers and day-care attenders in Shef eld. Some important contextual debates associated with conducting social research with people with dementia are considered. These include informed consent, competency, and how the interests of caregivers and people with dementia are bound together. A form of process consent was used in conducting semi-structured interviews with day-care attenders. Day-care attenders spoke about ‘being here’ in a number of ways. These include their initial experiences, their sources of satisfaction and their sense of being in families. These substantive ndings and the associated methodological insights suggest day-care attenders have important things to say as service-users if appropriate strategies for listening are employed. Service-providers can collaborate imaginatively with day-care attenders to actively explore how care might be shaped by the experiences of persons with dementia.
Introduction There is currently a growing interest in the idea that people with dementia could have an enhanced role to play in shaping care practice (Bond, 1999; Hirst, 1999). This interest can be traced to parallel trends in health and social care practice (Kitwood, 1997), academic discourse (Lyman, 1989; Cotrell & Schulz, 1993) and in considering the role of people with dementia themselves in service development (Cox et al., 1998). This change in emphasis, from pathology to people and their potential has been fostered in part by the latent invitation in community care policies to imagine such people as service users (Department of Health, 1990). Once this challenge is accepted a plethora of further questions arise as to the practical ways in which this goal might be achieved. We shall discuss some of these presently, but it is safe to say that the perspectives of people with dementia are becoming a mainstream concern (e.g. Audit Commission, 2000). This trend has emerged alongside a concerted attempt within care settings to eliminate the negative impacts of both environment and staff attitudes on people ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/01/030377-16 Ó 2001 Taylor & Francis Ltd DOI: 10.1080/09687590120045941
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with dementia. Most notable in the British context has been the in uence of Tom Kitwood’s ideas about person-centred care. Whilst his ideas have captured the imagination and encouraged further scrutiny into the everyday lives of people with dementia Kitwood has not argued that people with dementia ought to be actively involved in shaping their care. Arguably his most in uential contribution has been the formulation of a dialectical approach to dementia (Kitwood, 1990). For the nature of care settings this is signi cant. In this conception people with dementia are framed as recipients of a variable quality of care which affects the symptomatology of dementia. Thus, a ‘malignant social psychology’ will have a demonstrably negative impact on a person’s capacity to function mentally (Kitwood, 1997). The subjective experience of living with dementia has tended to be viewed as the domain of family caregivers whose stresses and coping strategies have been of much interest (e.g. Nolan et al., 1996). This may be in no small part a product of the enthusiasm over the last 15 years to fully recognise the crucial role that family caregivers have in underpinning the welfare state (Finch & Mason 1993). In recent years, in relation to dementia, this has also been evident in the popularity of caregivers’ narratives that that have appeared in British and US mainstream press (e.g. Dyer, 1996; Bayley, 1998; Grant, 1998). However, there has also been a similar mushrooming of personal narratives that are attributed to people with dementia (e.g. Davis, 1989; McGowin 1993; Rose 1996; Snyder 1999), although uncertainty surrounds the precise nature of authorship in some of these cases. It would appear the search for authenticity in the experience of dementia is well and truly on. Our Focus The focus of our research was to explore the question of unmet needs in relation to people with dementia receiving respite services and to consider their status as service-users—as people who actively shape their care. Our research comes at a time when attempts are being made elsewhere to outline a research agenda for evaluating quality of life and developing outcome measures for and with people with dementia in care settings (Bond, 1999). Brenda Gillies (1995) was a forerunner in seeking to include people with dementia in service evaluation, undertaking an exploratory study of users’ views in Dundee. The substantive ndings and practice implications that arise from this study are important as they represent the beginnings of a knowledge base in one approach to both understanding unmet needs and suggesting a way of alleviating them. People with dementia that Gillies interviewed spoke about not feeling their age and about having multiple illnesses. Acknowledge memory problems were typically attributed to the ageing process and not to medical conditions. This study also found that people located current sources of self-esteem in earlier life achievements, expertise or in the local context of friendship networks. It was also found that people perceived a higher level of disability in others around them than they did in themselves. Finally, it was reported that people with dementia were extremely satis ed with their experiences of services. She concluded that these ndings might
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inform service providers about being aware of the danger of ageism in the provision of appropriate activities, about how to enhance the quality of staff training and about promoting mutual support groups amongst users (Gillies, 1995). This route to including people with dementia as service users is far from clear. In particular, questions surround the processes by which their personal experiences are incorporated into care practice. Cox et al. (1998) addressed this issue by inviting a pre-existing group of people with dementia who met to talk about their experiences to become involved in developing a values framework for care settings. Some of the views that were noted included a desire for services that last, improved attitudes from staff, supported independence and to be seen as individuals. Here, people with dementia were included in a consultative capacity. The prospect of care services being responsive to the expressed views of people with dementia is one that requires a discussion about important aspects of dementia research. A starting point is to recognise that three distinct trends have been identi ed in related research. Downs (1997) has drawn attention to research that has sought to focus on the individual’s sense of self, the person’s ‘rights’ and recognition of the value in these perspectives. In the context of our research these perspectives might translate into a commitment to explore a person’s experience, their right as a user to inform service development, and the requirement that meaningful processes be created to elicit and respond to such views. The majority of research undertaken thus far has been with people in the early stages of dementia (Downs, 1997). Keady (1996) has argued that it is only during these early stages that the perspectives of people with dementia can be fully engaged and as early diagnosis is often not possible such perspectives are generally dif cult to determine. This dif culty is important to acknowledge not least because it draws attention to decisions that are made by researchers about what constitutes valid ‘engagement’. Goldsmith (1996) has focused on the nature of communication possibilities with people with dementia and he concluded that it is important to recognise it is a two-way process. That is, the person who is seeking to ‘hear the voice’ must be conscious of the normative expectations he or she brings to the encounter. Clearly, such a warning applies equally to the nature of experience—be it the views, opinions or perspectives—that one is seeking to listen to. In terms of informing our decisions about both methodology and substantive concerns there appeared to be some value in adopting an open-minded approach. For example, Saunders (1998) revealed aspects of experience amongst people with dementia that may have gone unnoticed had a predetermined substantive focus been used. A number of people visiting memory clinics were monitored in terms of how they explained their inability to recall certain things. Saunders highlighted the range of complex metaphors that people employed in accounting for their memory loss. This nding is signi cant as it is emblematic of the wider shift in thinking that has occurred from viewing people with dementia simply as one-dimensional beings, as experiencing only a living death (Woods, 1989). Saunders advises that: Family and institutional caregivers can support dementia patients by
D. Reid et al. acknowledging the dementia patients’ attempts to show the varied aspects of themselves … The data suggest that dementia patients should be treated by their families as multidimensional people who can be both forgetful and intelligent at the same time. (1998, p. 86)
Framework for Study In this paper, we re ect upon interview-based research undertaken with people with dementia in Shef eld. The data collection formed part of a larger project that set out to investigate unmet need amongst caregivers and the people with dementia they cared for. The research project, A Strategic Review of Services for Carers of People with Dementia (Ryan et al., 2000), was funded by Community Health Shef eld (CHS). The aims of the research were: · to investigate the nature of unmet need amongst carers in relation to respite care; · to provide CHS with recommendations about new service developments; · to consider the notion of unmet need in relation to people with dementia using respite services. However, as social researchers seeking to explore unmet needs with people with dementia in care settings and wanting to suggest ways in which such information can be used thereafter there are a number of complex debates to negotiate. What follows is a description of some key debates that were identi ed in the literature and also an explanation of how these debates shaped the methodological strategy we used in our research. People with Dementia as Distinct from their Caregivers In the decade since the NHS and Community Care Act (Department of Health, 1990) there has been a considerable interest in seeking to understand and support the work of caregivers. The requirement in the Carers (Recognition and Services) Act 1995 (Department of Health, 1996) that caregivers receive their own needs assessment was an important milestone from which further initiatives have followed (e.g. Department of Health, 1998). Government policy commitments to recognise and support the work of caregivers re ects what is recognised more widely that community care arrangements are designed so that caregivers are enabled to continue caring (Hughes, 1995). In the dementia care literature this emphasis has been apparent in the primacy given to the caregiver’s perspective. It also appears that in the recent past there has been resistance to the idea that people with dementia can be considered as individuals ‘in isolation’ from their caregivers (Keady & Nolan, 1995) or that there should be research involving only ‘one partner in the process of dementia’ (Keady, 1996). This ‘binding together’ of the interests of the person with dementia with their caregiver is understandable—especially so in community care. People with dementia do rely upon these caregivers for their continued participation in mainstream
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society—be this through emotional, nancial and/or practical support. Yet it has been noted that the interests of people with dementia and their caregivers do not always coincide (Askham, 1991). As many people with dementia are fundamentally dependent is it then acceptable to only view these tensions from the caregiver’s perspective? Care professionals such as community mental health nurses and social workers are well versed in having to negotiate such differences in perspective or opinion. However, in the current climate could there be a case for invoking care legislation about user-involvement to demand that equal attention be paid to the ‘views’ of people with dementia? These are clearly important questions that frame any investigation of unmet need amongst people with dementia. At an early stage in planning our research, after re ecting upon the issue of separation of needs, a decision was taken to collect data from people with dementia in day-care service settings. First, it was believed this would provide a separate physical space in which people with dementia could talk. It was felt that this was required in order for people with dementia to speak about their own needs, as distinct from the needs and perspectives of caregivers. Conducting research at the day services allows this separation to occur ‘naturally’ without having to orchestrate this in a domestic setting. Consent in Social Research Dementia involves cognitive impairment and for the social researcher seeking to communicate with people with dementia there is a clear requirement that the question of informed consent is addressed. Conventional rules for obtaining informed consent involve certain key requirements. These are, competence of the research subject, that information is given in a way that can be fully understood and that a suf cient degree of ‘voluntariness’ is assured and that authorisation is acquired from the research subject (Hansson, 1998). Thus there are clear points of reference for obtaining informed consent from people with dementia and these are referred to in the discussion that follows. Competence has been described as ‘the dilemma’ in relation to negotiating consent from people with dementia to participate in social research (Crossan & McColgan, 1999). Jacques takes the view that ‘the sufferer’s capacity to decide must always be in doubt’ (1997, p. 28). It is this ‘doubt’ that has typically been invoked to reject the decision-making potential of the person diagnosed with dementia. For Berghmans & Ter Meulen (1995) the possibility of gaining informed consent is replaced with a debate about how the ‘best interests’ of people with dementia can be protected in research. However, the prevailing zeitgeist now appears to be about giving people with dementia the bene t of the doubt. For example, Kane (1998) argues that while there may be questions about certain abilities respect must be given to those areas in which people with dementia retain competency. What seems to be occurring is an interest in the potential for collaboration with people with dementia as well as with people with other cognitive impairments. For example, Hansson (1998) accepts that self-determination is central to informed consent, but argues that other values could be introduced in order to include people
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with ‘a low capacity for self-determination’ in research. Speci cally, Hansson argues this is particularly salient in situations in which ‘no vital interests are endangered for the person directly concerned’ (Hansson, 1998, p. 183; see also Valimaki & Leino-Kilpi 1998). In the eld of mental health nursing Usher & Arthur (1998) have argued that the requirement to obtain informed consent is problematic if this is considered to be a static process. Instead of a static process Usher and Arthur advocate the use of process consent where questions about a person’s participation in research are asked at intervals. Crossan & McColgan (1999) utilised what they call ‘ongoing negotiated consent’—a form of process consent—in social research involving people with dementia. That is, not just at the start, but throughout the duration of their research they reminded people of their participation in the study. At the heart of this approach was a commitment by the researchers to judge the reactions of nursing home residents and use these observations as a basis for deciding whether a person was both willingly and knowingly participating in the research. This is an approach that relies upon the conscience of the researcher to monitor the quality of consent on an ongoing basis (Reid, 1999) and represents an attempt to ensure the participation of people with dementia is voluntary. It was felt that day service settings would provide a suitable place for us as researchers to gain ‘familiarity’ with people with dementia and also where the question of consent could be addressed on an individual basis. Ongoing research being undertaken by one of the authors provided some guidance in these matters (Reid, 1999). During three familiarity visits carried out at each setting, the research was explained to day-care attenders using a conversational approach that included ‘gentle reminders’ (Crossan & McColgan, 1999) about our intentions. Importantly, each person was also reminded they had a right to opt out. In terms of explaining our intentions, giving information in way that could be understood, we talked about ‘writing a report’, ‘gathering views and opinions’ and ‘talking to older people like you in places like this’. This sensitivity about the appropriate language to use with attenders is directly linked to the question of knowledge of diagnosis.
Diagnosis Rice & Warner (1994) have found that while caregivers are normally told the diagnosis of dementia the people with dementia themselves are told only on the basis of what ‘stage’ they are judged to have reached. Leroi et al. (1999) suggest that one of the reasons it may not be appropriate to tell people with dementia is because of the anxiety it may cause. Yet surely anxiety associated with problems of memory loss and confusion are experienced irrespective of whether someone has been told their diagnosis? Fearnley et al. (1997) agree there are dangers, but also potential bene ts if people are made aware of their diagnosis at the earliest possible time. These include the opportunity to make future plans, for example, about care and making decisions about whether to participate in research. Other research has also highlighted the link between people with dementia having information and this empow-
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ering them to make informed choices about the future (Alzheimer’s Scotland Action on Dementia, 1998). For social researchers the concern about diagnosis is not only about the impact of disclosure, but also about the implications for seeking informed consent and for methodology. For instance, one of the problems that Crossan & McColgan (1999; see also Gillies, 1995) encountered was uncertainty as to whether people with dementia they met had been told their diagnosis. One response to these ‘problems’ might be to conclude that the views of people with dementia are invalid because many do not recognise themselves as service users. We decided that this course of action would discriminate against people who for no fault of their own are frequently denied a transparent explanation of their condition. Instead, we decided to meet people on their own terms. There was no need for them to admit they had a dementia diagnosis (although some did voluntarily). It was felt that this is not a prerequisite for people to have ‘valid’ opinions about the place they were spending their time, what they felt about it and having the ability and inclination to describe their wider lives. It was from this position that we decided the most appropriate interpretation of unmet need would be one that emerged from what people said about themselves in care settings, if ‘informed’ consent had rst been given. Methods Many of the details relating to the methods used in this research have already been described. Here, some further important aspects are provided. The managers of three day-care settings were approached for permission to undertake a series of visits and to ask attenders to participate in semi-structured interviews. Voluntary sector providers operate two of these settings while the other is operated jointly by both a voluntary and a statutory sector provider. One service manager asked for a letter to be sent to caregivers prior to the interviews explaining the purpose of the research and providing an opportunity for caregivers to withhold their consent. No objections were received. The two other managers said they had consulted caregivers and had raised no objections to the research. Existing research suggests that semi-structured interviews (Gillies 1995) and group discussions (Cox et al., 1998) provide a fruitful way of allowing people with dementia to speak about their experiences of care and of life more generally. A loose interview protocol was devised that focused on eliciting views about satisfaction with the setting, wider aspirations and life in general. During three initial ‘familiarity’ visits to each of the settings it became clear that interviews would have to be conducted in ways that complimented the existing structure of activities. Visits were made to all services during the summer of 1999. At Service A these visits were arranged on the same day of the week to ensure the same cohort of seven or eight attenders were present. After providing advance notice three interviews were conducted with two different attenders each time. Interviewing people in pairs of their choosing was an arrangement that emerged after discussion with the group about the best way to conduct the interviews.
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At Service B one interview was conducted with four attenders. On the day in question the group of eight split between the two rooms of the setting with those who had agreed to participate remaining in one room. At Service C a discussion group normally met on the day for which the interview was scheduled. The staff at the centre agreed to allow one of the research team to lead the discussion after having rst reassured themselves that the attenders had consented to participate. Six people agreed to take part and be recorded, while one man said he only wanted to listen. There were also two interviews conducted in a room at Service C with two attenders, without any staff present. One man was interviewed in his own home. His agreement to participate was given on a previous visit when his wife, then interviewee, had suggested he might also like to have his views listened to. Two attenders, one each at Service A and B, were judged by the researchers to lack the conversational skills required to participate and they were not asked to contribute. In total, 19 interviews were undertaken. The interviews were tape recorded after permission was sought from the people concerned, and after assurances were given about con dentiality and anonymity. Throughout the period leading up to the interviews, including initial visits, people with dementia were reminded about the purpose of the research and their right to withdraw at any time. The interviews were transcribed and analysed for emerging themes (Glaser & Strauss, 1967). The central themes to emerge are presented below. Results Being Here The primary way that many attenders described their presence in the settings in which the interviews took place was to talk about ‘being here’. As researchers we had made a conscious decision not to impose our own understandings of what ‘here’ meant. Attenders themselves did not introduce terms like ‘day-care’, ‘respite’ and ‘service’, and so ‘being here’ became, as the interviews unfolded, the shared de nition of each setting. For many, ‘being here’ was unproblematic in the sense that it was something that required no real scrutiny. Other attenders offered speci c reasons for ‘being here’. Eddie referred to the change of routine that it offered. Anna understood that her visits allowed her husband a break. Charlie also thought it likely his wife would appreciate his absence and the reduction in disruption he thinks he causes at home. A chance to get outside the house (Anna; Frank) or a ‘nice break’ (Betty) were other reasons that attenders gave for ‘being here’. Sources of Satisfaction A great deal of satisfaction was expressed about the day-care services across the range of settings. People enjoyed the company of other people they met in the settings and some talked about the friends they had made. Clara said that although
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she did not know anyone when she started attending, ‘I got plenty of friends now here. So I look forward to coming. I think it’s great having these places’. Many attenders, such as Betty, reported being pleased with the size as well as the composition of the group of people she met each time—‘a good crowd’, as Charlie put it. Attenders highlighted the advantages of the group setting in a number of ways. In a group discussion Enid explained that she felt being part of a group brought her out of herself. She lacked con dence in speaking and believed that if there were no other people around encouraging her to do this she would probably remain silent. At another setting Charlie said that he appreciated the opportunity he had to engage in conversation whilst Betty also said she enjoyed the chance to talk with others. Another way in which the attenders talked about ‘being here’ was by differentiating themselves from others in the setting. Attenders often demonstrated and described how they felt compassion towards other attenders in their group. Charlie talked about the supportive role that he felt he had, whilst Frank and Enid both talked about being helpful to others who encountered problems. These reported attitudes were borne out in the observations undertaken at each of the settings. There was a sense of interdependence, of solidarity—Anna referred to it as ‘mucking in together’. Some attenders compared where they were favourably with other places they had been to. Frances said ‘it’s a nice position isn’t it? … Yes, it’s better than going right down into town isn’t it’. Arthur complained about the time he had spent waiting for a place to come up his current day centre but said that he found it a far better place to visit than other places he had been to. Asked what he thought about these other places Arthur explained: Not very much … Well I said that I’ve been to one or more places in this area and I thought that this place was a very, very convenient for me because I only live literally around the corner and some other places—two anyway were rather like comparing a workman’s cafe´ as compared with luxury surroundings. In the majority of cases the attenders felt that ‘being here’ was an enjoyable experience. Charlie called it ‘splendid’, while Betty called it a ‘great place’. Another reason that attenders felt this way was because they felt they were being cared for (Eddie). In terms of the staff Charlie felt they did ‘a smashing job’, whilst Frank acknowledged the assistance he received as a member of the discussion group. Betty said that she found the staff ‘friendly’ and ‘helpful’. Positive attitudes towards the staff were demonstrated by attenders like Frank and Victor who both recognised their own limitations and hence their need for assistance from time to time. Derek felt that the staff—or the ‘people here’—helped him to feel ‘like you’re on rm ground.’ He agreed the people ‘are very kind to you’ and made him feel ‘like you’re a member of an organisation … They’ll look after you if necessary.’ Some further sources of satisfaction amongst attenders were found in being given ‘authority’, which Frank said he found ‘ attering’. Doug said that he appreciated the variety of activities that were organised in the day centre while Beth admitted that what pleased her most was the fact that it had been her choice to
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attend in the rst place. Lynda also enjoyed ‘being here’ and particularly the physical exercise she could enjoy. Anna said that ‘being here’ gave her the feeling of having done something good. For Beth there was nothing she liked better than cleaning pots and moving things around. She said that she had always had a domestic role and was happy to be carrying on ‘here’ with what she had always done. Attenders were asked whether there were things that they would change about ‘being here’. The majority of people were, as has been demonstrated, very happy with their experiences. There were, however, two speci c suggestions for change that were raised. Frank explained that he was keener on physical activity than he was on the crosswords that he was asked to do when he came here. He felt that he wanted greater physical activity and this related to his view of himself as a physically active man. A similar point was made by Eddie who wanted to play table tennis but could nd neither a table nor a partner to play with. Victor added that he had previously attended another place where he had visited a safari park. He said he would like to go somewhere like this again. Victor said he was not very happy. He said he was anxious about his health and it may have been this preoccupation which lay behind his comment that he did not feel he was bene ting from participation in the discussion group. Attenders were also asked whether they would feel comfortable asking for something that was not already provided in their respective settings. Enid said that she felt she would be able to voice her concerns and Anna also said that she too would feel con dent asking. Others echoed this con dence (Betty, Charlie), whilst Bill said that ‘if it got sort of overcrowded then you’d have to say something about it wouldn’t you … But we don’t do that’. Initial Experiences One issue raised by a number of attenders was in relation to their initial experiences of attending the day-care service. There was a great deal of insecurity, uncertainty and anxiety that people recalled about this time. Three attenders spoke about their initial misgivings when they started ‘coming here’. Charlie said that he felt a bit ‘perturbed at the start’, but now had no regrets, whilst Frank said that being part of a regular discussion group was something he had never done before. A further type of worry was found to supplement this general sense of uncertainty. Anna said she had feared her family’s motives when she had rst attended although now she looked forward to coming: When I rst started coming I was frightened to death. I thought they were going to keep me here. Do you know what I mean? Well you’re not used to these things are you when you rst? And then I got into it and I love to come. That’s what I thought when I rst started coming. I thought, ‘oh they’ve put me in a home. They’ve got shot of me’. Do you know what I mean? George was interviewed at home and had never attended day-care. He talked about his diagnosis of dementia and described the kinds of fears that he had about
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attending a group-based setting and justi ed his decision to avoid these situations at all costs: The one thing they suggested was to go to such and such a place and mix with such and such a circle and up the road there is a place up there. But the thought of those things, just because of where I’m at, they are so intimidating. It’s hard to express because it doesn’t make sense. Why? Where is the problem just talking to people? Where is the problem? Home-Life Attenders invoked aspects of their home-life when they spoke about their experiences of ‘being here’. Attenders were not asked directly about this aspect of their lives but chose to volunteer comments throughout the interviews. Betty lives on her own but receives support from her daughter who visits and telephones regularly. Speaking about her life at home Betty complained that since having retired she gets bored with her own company. She said she sometimes felt isolated, lonely and that she misses people. She also re ected that days tended to be the same. However, Betty enjoyed aspects of living alone particularly her gardening. Harry also said he liked living on his own and said he was never worried about spending time alone. Speaking in the summer Harry admitted he watched a lot of cricket on television and felt he was self-suf cient: ‘that’s only one of the things. I like to read and oddly enough I’ve got a very good memory’. Charlie had little positive to say about life at home. He reported that he did not see his family very much now, despite it’s large size. However, he appreciated that as grown-up adults with their own families this was not an unusual state of affairs. Joyce had mixed feelings about spending time at home. She had recently moved from a larger house that she had previously shared with her husband to a at on her own. Although she lamented it was ‘not so nice’ going back to an empty house she said she kept herself busy there: Oh I always nd something to do in the at. Always nd something to do. But I like me at and I like living up here but I really miss me house and big garden. My daughter said ‘if you were in your house you couldn’t do gardening like you used to do’ but I think if you can move about and do, you’re better than sitting down. I don’t think it does your back any good. Not arthritis. So, you know how these daughters are. ‘Shouldn’t do this Mum. You shouldn’t do that Mum’. But I don’t take no notice—I just does it. Same if she catches me on ladders … I’d been washing windows and putting curtains up—she went mad! “We’ll do that, we’ll do that!” Frank’s description of his home-life involved describing his relationships with his wife and daughter. Frank said that with his wife the roles have reversed because until recently he had been providing support to enable her to live with her own illness. To Frank his family’s history is one punctuated by ill health. He felt he still supported his wife and together they assisted their daughter to cope with her long-term illness.
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She did not always want their help but Frank said he took something from trying to help her. He said that his daughter’s situation had made him realise he is not helpless. Alice felt that life at home with her husband was just ne. She also pointed out that she felt her family ‘always come rst … I’ve always thought that’. Life in General Some of the views and perspectives that attenders expressed initially seemed to have only a tangential relationship to the question of their experiences of ‘being here’. In the course of the informal conversations that preceded the interview Charlie said that he knew he had a diagnosis of Alzheimer’s. He talked about it again during the interview when he said he believed the other attenders had the same diagnosis as he did. He related his Alzheimer’s to uctuations in his health and said he realised be now needed support. Despite this Charlie felt that growing old was not half as bad as he had been led to believe and said he enjoyed life. Betty also talked about her age saying that she never feels old and that she tries to keep herself as active as possible. For Eddie old age was a concern. He recognised that his life was changing as he was getting older. In particular, he regretted that since he started having memory problems he could no longer drive his car. Eddie was passionate when he said he felt there was a distinction between ‘living’ and ‘existing’ into old age. He wanted to live life to the full. Harry acknowledged he was having increasing dif culties with communication: ‘it’s very dif cult. That’s very dif cult to say what you want to really say. But it doesn’t always come out right’. Others spoke about the problems that poor memory had caused. Mary put it down to aging, a process she didn’t think much of: ‘No, not when you can’t hurry up and remember things … and sometimes I’m quite good, but on other days!’ She said her poor memory had created tensions with her son: Cause I’ll say ‘Oh I can’t remember!’ you know and my son gets really annoyed. He’ll say ‘I’ve told you that one mother and I’m not telling you anymore’. And ‘you can do it’ and ‘you should know it’. Oh dear when I think about it! … He thinks that I should know and out with it but I’ve not always been like this you see … And it’s not funny either. Discussion This research revealed there is a lack of methodological guidance available to social scientists seeking to include people with dementia as ‘users’ of services. Although efforts were made to draw upon existing research and utilise appropriate research strategies there was a conspicuously low level of monitoring of our work that tended to re ect the current knowledge base. Lacey (1998) makes a general, but relevant point about the lack of an appropriate system for scrutinising social research in a similar way to the ethics committees that regulate medical research. We agree with Clements et al. (1999) that the quality of consent that researchers gain with vulnerable individuals should be subjected to active lay scrutiny.
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Our utilisation of a loose variant of process consent, involving a ‘representation’ (Reid, 1999) of the research aims and objectives to people with dementia, was felt to offer a pragmatic and ethically sound method of upholding if not the principles then certainly the spirit of informed consent. The presumption of doubt in relation to the competency of people diagnosed with dementia to give consent already seems to be a grey area when people who acknowledge their diagnosis are viewed in existing research as respondents capable of authentic experience (e.g. Cox et al., 1998). The decisions we made about consent had a direct impact on the nature of the data that we subsequently collected. Conducting interviews with people with dementia—either on their own or with others—whilst avoiding any service vocabulary was an unconventional way of seeking to explore the perspectives of services users. For a start the notion of attending a service was only tangentially suggested by the researchers to people with dementia. The latter spoke about their experiences of ‘being here’ and this imprecise de nition of the setting was reinforced by us as researchers who were unwilling to impose a potentially ‘alien’ service vocabulary. Whether this is considered to have been a valid strategy depends to a large extent on how willing we are to accept that the application of the notion of service user to people with dementia implies a collaborative venture. It is collaborative also in the sense that we as non-disabled researchers were engaged with disabled people in research that sought to be empowering (Kitchin, 2000). Jacques (1997) suggests that a system of substitute decision making based on the ‘best interests’ of people with dementia is probably the most appropriate way in which to negotiate the doubt associated with competency. The questions of how to determine best interests in care settings and who should do so raises issues such as the availability of personal biographies, the possibility of systematic advocacy, transparent and practical processes for determining best interests, the existence of political will and availability of nancial resources. An alternative starting point is to accept the need for collaboration and then to explore how what people with dementia say can be incorporated imaginatively into service development. In the research outlined in this paper the original aim was to explore whether people with dementia attending day-care services had unmet needs. Having argued that the notion of the service user is a collaborative venture it can be seen from our ndings that people with dementia do not have a uniformity of experience—a voice—but instead have individual, articulate voices that speak of unique life experiences. This conclusion is a fundamental one as it shows that people with dementia are groups of persons who have ongoing personal lives in which experiences are coloured by life outside care settings. That this is rarely acknowledged, with services being ‘one ts all’, may be argued to equate with an unmet need. On a substantive level we believe the perspectives on life provided by people with dementia in this research do represent information that can lead service development. Some ideas about how this can occur are now suggested. The major themes identi ed from the interviews offer a starting point in this collaborative venture. First, what people had to say about ‘being here’ alerts us to the fact that the vocabulary of the care setting is problematic. This will come as no surprise to care staff members who have to negotiate communication with people with dementia on a daily basis. As a
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topic for discussion this nding might productively inspire speci c staff training about how best to establish any person’s understanding of why they are in the setting and seek to explore what any person might want from these visits. The speci c sources of satisfaction that were identi ed by people with dementia appear to vindicate the day-care service model. A note of caution should accompany this conclusion. The day-care attenders interviewed for this research had, in practice, ‘agreed’ to attend these services and by implication were satis ed to do so. What is not clear is how many people, like George, have voted with their feet and chosen not to attend? A future research agenda is suggested here. For those who did attend the group context was valued for a number of reasons including the company offered, the possibility for developing friendships, and the support that people could both offer others and receive from care staff. People recognised their own vulnerability and some speci cally re ected upon their fears when they rst arrived at the setting. Others not attending services also expressed their reticence about what services might be like. This particular nding suggests that new attenders might better be viewed as experiencing a distinct phase in which careful support from staff might ease the transition from one way of life to another. The evidence that people clearly see themselves as having ongoing family relationships suggests that this phase in particular represents a time when questions about the motives of loved ones need to be asked. The opinions about preference of setting expressed by a few people hint at a discerning attender who knows the difference between what he or she wants and does not want. The absence of complaints about current settings suggests that people with dementia enjoy the services we visited and this was certainly our impression gained through observations. This does not, though, equate with the conclusion that people would not enjoy other forms of service provision. From a collaborative perspective the two men who said they would also like to participate in more physical activities is a challenge to service providers to meet these needs in other ways. For example, the identi cation of individuals who share similar interests might be viewed as evidence for the need to devise tailored ‘respite’ days—which in turn might mean the development of support services that complement the positive bene ts of attending day-care. The shift in thinking suggested here implies a more comprehensive appreciation of individual ‘needs’. The likelihood of there emerging con icts of need between people with dementia and their caregivers is minimised if we accept that care is something only people with dementia experience directly. In the ways suggested in this paper persons with dementia can be the starting point for de ning their own unmet needs, not as subjects of a utilitarian approach (Hodge, 1990) to developing outcome measures, but as experts of their own experience. Conclusions People with dementia in day-care settings do not consider themselves to be service users in the conventional sense. Yet it is possible to engage these people in research about their experiences. It is also possible to consider the ethics of undertaking research and accommodate people with dementia. People with dementia are persons
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rst with views, likes and requirements that co-exist with their illness. It is for services to devise ways of actively listening to people with dementia on an individual basis and responding imaginatively to what they hear. It has been shown that methodologies can be developed and modi ed to allow this to occur. However, there are dangers associated with researchers having little guidance about the process of involving people with dementia in research and with generalising from small sample research projects. Greater collaboration between interested parties is key to promoting both the emergence of a consensus about appropriate strategies for listening and, crucially, the generation of agendas for action. REFERENCES ALZHEIMERS SCOTLAND ACTION ON DEMENTIA (1998) Life after Diagnosis. A report on meeting the needs of people in the early stages of dementia (Edinburgh, Alzheimer Scotland Action on Dementia). ASKHAM, J. (1991) The problem of generalizing about community care of dementia sufferers, Journal of Aging Studies, 5, pp. 137–146. AUDIT COMMISSION (2000) Forget Me Not (London, HMSO). BAYLEY, J. (1998) Iris: a memoir of iris murdoch (London, Duckworth). BERGHMANS, R.L.P. & TER MEULEN, R.H.J. (1995) Ethical issues in research with dementia patients, International Journal of Geriatric Psychiatry, 10, pp. 647–651. BOND, J. (1999) Quality of life for people with dementia: approaches to the challenge of measurement, Ageing and Society, 19, pp. 561–579. CLEMENTS, J., RAPLEY, M. & CUMMINS, R.A. (1999) On, to, for, with—vulnerable people and the practices of the research community, Behavioural and Cognitive Psychotherapy, 27, pp. 103–115. COTRELL, V. & SCHULZ, R. (1993) The perspective of the patient with Alzheimer’s disease: a neglected dimension of dementia research, The Gerontologist, 33, pp. 205–211. COX, S., ANDERSON , I., DICK, S. & ELGAR, J. (1998) The Person, the Community and Dementia. Developing a Value Framework (Stirling, Dementia Services Development Centre). CROSSAN, B. & MCCOLGAN, G. (1999) Informed Consent: old issues re-examined with reference to research involving people with dementia, paper presented at the annual conference of the British Sociological Association, Glasgow. DAVIS, R. (1989) My Journey into Alzheimer’s Disease (Wheaton, Tyndale House). DEPARTMENT OF HEALTH (1990) Caring for People: community care in the next decade and beyond: policy guidance (London, HMSO). DEPARTMENT OF HEALTH (1996) Carers (Recognition and Services) Act: policy guidance (London, Department of Health). DEPARTMENT OF HEALTH (1998) A Matter of Chance for Carers? Inspection of local authority support for carers (London, Department of Health). DOWNS, M. (1997) The emergence of the person in dementia research, Ageing and Society, 17, pp. 597–607. DYER, J. (1996) In a Tangled Wood. An Alzheimer’s Journey, (Dallas, TX, Southern Methodist University Press). FEARNLEY, K., MCLENNAN, J. & WEAKS, D. (1997) The Right to Know? Sharing the Diagnosis of Dementia (Edinburgh, Alzheimer’s Scotland Action on Dementia and Mental Health Foundation Scotland). FINCH, J. & MASON, J. (1993) Negotiating Family Responsibilities (London, Routledge). GOLDSMITH, M. (1996) Hearing the Voice of People with Dementia. Opportunities and Obstacles (London, Jessica Kingsley Publishers). GILLIES, B. (1995) The Subjective Experience of Dementia. A Qualitative Analysis of Interviews with
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