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OLDER PEOPLE AND COMMUNITY CARE IN SCOTLAND - A REVIEW OF RECENT RESEARCH
6 DEMENTIA CARE
6.1 Dementia care is assigned its own section in this review because of the high level of recent research activity in this area compared with others. New approaches to dementia care are reflected in the way much of the research has been conducted. The research reviewed includes issues for people from minority ethnic groups and people living in remote and rural areas. The potential for not only self expression but also choice and control are the subject of research on people with learning disabilities and dementia.
6.2 In a review of dementia research published in 1998, Moriarty produced a set of key findings from research which remain relevant today.
The prevalence of dementia is difficult to determine because identification of people with dementia in primary care is variable and little is known about how social services identify dementia in non medical referrals.
There is increased public awareness of dementia as well as new drug therapies and this has affected the stage at which people are informed of their or their relative's diagnosis. The need for access to counselling and support has been more clearly articulated as a result.
People from minority ethnic groups are becoming a growing proportion of people with dementia. Accessible and culturally sensitive services are needed to meet their needs.
Intensive domiciliary care if reinforced by intensive carer training and specialist care management may enable people with dementia to remain in the community for longer.
Our knowledge of the potential for community services is hampered by evidence of variations in provision.
People with dementia living in the community are especially likely to be reliant on the support of a single person, usually their spouse or adult daughter.
Carers' psychological health is likely to be poorer if they are caring for a person with dementia and providing substantial amounts of care. Lower levels of depression have been found in carers who were more knowledgeable about dementia.
NEW APPROACHES TO DEMENTIA RESEARCH
6.3 Until the last 15 years or so the prevailing view of dementia amongst concerned professionals was that of a condition of inevitable and unpleasant deterioration in physical and mental functioning (Walker et al 2001). From that perspective, care is seen in terms of keeping the individual safe from physical harm, of meeting physical care needs and of using medication to temper 'difficult' behaviour. Whilst this view still has its adherents, an influential psychosocial approach to care of people with dementia originated with Tom Kitwood and the Bradford Dementia Group has been developed in the UK and internationally, and notably at the Dementia Services Development Centre at Stirling. It is based on the perception that "at least some of the symptoms that are commonly found might be due more to a failure of understanding and care than to a structural failure of the brain" (Kitwood 1997). One explanation given for this new focus is the influence of the new emphasis in the NHS on the autonomy and human rights of patients coupled with developments in nursing theory away from a purely medical model towards holistic care (Walker et al 2001).
6.4 Dementia care mapping (DCM) developed at Bradford as a practice tool has been widely used in research as a means of measuring the quality of care received in formal settings from the standpoint of the person with dementia (Walker et al 2001; Barnett 2000; Brooker 2002). The technique involves systematic observation of people with dementia over a number of hours. Well-being or ill-being is rated for activity observed in 5 minute segments. Activity is identified from a list of 24 behaviour categories e.g. eating or drinking, participating in exercise. Well or ill being is also recorded in relation to non interactive behaviours e.g. unattended distress, being withdrawn.
COMMUNICATION: HEARING THE VOICE OF THE PERSON WITH DEMENTIA
6.5 Building on earlier research (Goldsmith 1996), researchers at Stirling explored different approaches to communication with people with dementia. This produced evidence that many people with dementia, including those with significant communication difficulties, can, with the right kind of support, take an active role in communicating their thoughts and feelings about services (Allan 2001). The main outcome of the project has been a set of training materials to support staff and managers in exploring the area of service user consultation.
6.6 An important feature of this project was that care staff themselves rather than researchers undertook the direct work on communication with service users. Given the starting point of the study - that people with dementia can communicate - the staff, their attitudes and motivation are a central focus of the project. These staff were working in a variety of settings including day centre, care homes, a hospital ward and a counselling service (the project's resources were insufficient to include either domiciliary services or services for minority ethnic groups).
6.7 In her report's conclusions Allan draws attention to some of the obstacles encountered, for example, resistance to the idea that communication with service users could be 'work'; and lack of confidence initially in both service users and staff in their ability to communicate. The 'techniques' used to assist the communication process were essentially aids rather than formulae to be applied in any situation. Allan discusses factors which were found to promote communication such as attention to pacing and timing, confirming Goldsmith's earlier conclusions. Her final point relates to "…the need for staff to develop and maintain a strong sense of meaning in their work with people with dementia. It is this which will enable them to operate in the most sensitive, creative and personally rewarding way." (Allan 2001, p114).
6.8 An analysis of non-verbal behaviour in people with dementia based on ethnographic, participant observation - a method explicitly based on the observer's interpretations of behaviour - adds further to our understanding of the capacity of people with dementia to communicate (Hubbard et al 2002). Findings from this study, which was carried out in a day centre in Scotland, suggest that encouraging non-verbal forms of interaction between carers and people with dementia, and between each other, can mean that more people with dementia are included socially in the group.
6.9 Advances in communication methods through development and research mean that researchers now have reliable techniques available for both observation and interviewing with people with dementia. The day care evaluation discussed below (Walker et al 2001) exemplifies the application of these complementary approaches.
Different cultural perceptions of dementia
6.10 The confusion and anxiety of dementia sufferers from minority ethnic groups has been found to be exacerbated by the lack of culturally aware services (Anderson and Brownlie 1997; Scott 1998; Patel et al 1998 cited in Netto 2001). A recent exploratory study of living with dementia as experienced by South Asian people (Bowes and Wilkinson 2003) draws attention to cultural differences in the way people perceive dementia and the influence this has on what kinds of support they need. The authors argue that cultural variation is such that the only meaningful approach to meeting needs is to offer person-centred mainstream services to all on an equal basis. This approach would avoid stereotyping minority ethnic groups and avoid excluding groups such as gypsy travellers or religious communities who also have distinctive cultures.
Evaluation of day care services
6.11 An evaluation by Queen Margaret University College is a good example of the new approach to dementia research because of the fullness and quality of the published report. The approach to and methods used for data collection and analysis are clearly explained in the report, covering issues of ethics, quality assurance and participation. In this study a combination of methods was used to evaluate two different day care settings: a day hospital and a day centre. The study involved: a structured questionnaire for staff on organisation and culture; focus groups and interviews with 21 staff; interviews and DCM with 10 service users with dementia; and interviews with 14 informal carers. The research team attended the settings weekly over a 2.5 month period. DCM and interviews with people with dementia was carried out by experts in dementia care from the Royal College of Nursing. The consent of people with dementia to participation in the evaluation was obtained using the Process Consent method (Dewing, 2002)
6.12 The evaluation focused on the extent to which the stated philosophy of the services is translated into practice and the therapeutic aims of dementia care are pursued. In one of the settings there was a lack of fit found between what staff perceived to be the well being of their clients and what was revealed about the quality of care by the DCM analysis. Detailed evidence from DCM is presented to show how when left unattended sociable individuals faired well in the day care setting whereas less sociable people were withdrawn and disengaged. A high level of group activity stimulated by staff produced higher levels of enjoyment and well being amongst day care attendees but at some cost in terms of one to one contact.
6.13 The main benefit of the day care service identified by informal carers was respite. Although they identified the company, stimulation and affection as valuable benefits for their relative, they were not aware of the potential for therapeutic benefits and therefore had no expectations in this regard. The report's authors conclude that respite for carers is not a sufficient justification for long-term funding of day care. National standards and professional education are needed to support high quality day care which both enables the carer to feel supported and provides therapeutic experiences enhancing the well-being of the person with dementia, and indirectly the carer.
6.14 The researchers observe in their recommendations that while improvements in dementia care practice are needed there are "possible sources of resistance" to change. These include: the low status of care work with people with dementia, the power and prestige of the medical profession; the "dead weight of tradition"; and the influence of the medical model on doctors, other staff and family carers (Walker et al 2001) .
CHOICE FOR PEOPLE WITH DUAL IMPAIRMENTS
6.15 Increased longevity of people with learning disabilities and concern about how their needs can be met prompted a Joseph Rowntree Foundation funded study to examine how far people with dementia and learning disabilities are involved in making choices and decisions about their own lives. The 20 participants lived in Scotland in a variety of settings and care arrangements. They were all diagnosed as having dementia or were awaiting assessment. Their ages ranged from late-30s to mid-70s and most were around 50 years old (Stalker et al 1999b).
6.16 The researchers point to previous research which has shown that opportunities for older people with learning difficulties to make choices are not determined solely by their abilities but also, and more importantly, by the attitudes of staff. This point is well illustrated in the Rowntree study. The research participants often had clear preferences about what they wanted their lives to be like but most were prevented from making decisions and choices, in part because of the attitudes of those around them. A number of practical pointers are put forward to remedy this: paying attention to how people communicate; being willing to tolerate risk; allowing enough time for people to take in information; allowing staff time to grow familiar with the people they are supporting; and offering people practical tasters of services to help them choose (Stalker et al 1999b).
6.17 The degree of control which people with a learning disability and dementia have over their lives is the subject of ongoing research at Edinburgh University. This study stems from observations that people with learning disabilities who develop dementia are usually moved out of their homes and into nursing home care. The study aims to develop best practice guidelines for supporting such people to stay in their own homes and communities by analysing what community, inter-organisational and service responses are most effective 12.
DEMENTIA CARE IN REMOTE AND RURAL AREAS
6.18 Small scale qualitative research sponsored by the Carnegie Trust presents views of people with dementia and their carers about their support and their experience of living in rural areas of Scotland (Innes et al 2003). The study aimed to redress the finding of an earlier study of service providers in rural Scotland which highlighted the exclusion of people with dementia in service provider consultation processes. In this follow-up study the researchers aimed to demonstrate the value of seeking the views of this particular group of service users.
6.19 Seventeen people with dementia (4 of whom were Gaelic speaking) participated in face to face semi-structured interviews. All lived in remote and rural areas and there was no attempt to compare their responses with the responses of people in more urban areas. Participants praised services which:
- encouraged a social life (11 responses)
- provided stimulation (9)
- were appropriate for their needs (9)
- provided care that was "loving" and more than just "going through the motions" (8)
Staff putting in additional effort, be it in time or duties carried out (6 responses) and the feeling of having "connected" with the service provider (5) were also among the positive comments.
6.20 Participants criticised services when they found the care on offer disorientating (5 responses) or distressing (1), inappropriate for their needs (5) and when they disliked the service provider (5) or other service users (3).
SUMMARY
6.21 There now exists in Scotland an active and productive network of researchers applying and extending new research methods which focus on 'hearing the voice' of the person with dementia. This network is part of a wider international network of researchers whose work is closely linked to innovation in practice. The enthusiasm and commitment of research in this field is distinctive and has generated methods and approaches applicable beyond the field of dementia care.
6.22 Dementia research has established that, given the motivation and appropriate training, researchers and others can communicate meaningfully with people and include them in research. Collaboration between researchers, practitioners, carers and people with dementia has lead to the development of methods for observation and interviewing which can contribute to better care. One study found that by encouraging non-verbal interaction between carers and people with dementia, more people with dementia were included socially in a group.
6.23 There are cultural differences in how dementia is perceived and therefore person-centred approaches and services are the key to understanding and meeting the needs of people with dementia from different ethnic groups.
6.24 The main benefit of day care as perceived by unpaid carers is respite for themselves. However Walker et al's (2001) day care evaluation, using interviewing and Dementia Care Mapping to include the perspective of the service users themselves, reveals the therapeutic value of the service.
6.25 Research on the potential for people with learning disabilities and dementia to exercise choice and control emphasises staff attitudes and the need to allow time and space for people to make their choices.
6.26 The study of people in remote and rural areas provides an illustration of the potential for people with dementia to express their views.
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