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OLDER PEOPLE AND COMMUNITY CARE IN SCOTLAND - A REVIEW OF RECENT RESEARCH
5 LONG-TERM CARE
5.1 We know from Census 2001 that 5 per cent of people in Scotland aged 65 and over live in 'communal establishments' - predominantly care homes - and that for the 85 and over age group the proportion is 22 percent. Slow progress in the development of viable housing and social care options, coupled with demographic trends, mean that communal living will be the experience of significant numbers of older people for the foreseeable future.
5.2 Quality of care, quality of life and the relationship between the two concepts is the subject of much of the research included in this section. Access to health care for residents is an aspect of quality of care which has received some attention: this review includes a study of physiotherapy and reference to ongoing palliative care research. The impact of staffing issues on quality of care is highlighted as a neglected topic. A UK wide survey of admissions to care homes is also included in this section.
QUALITY IN RESIDENTIAL AND NURSING HOMES
5.3 Research on quality of care and quality of life has contributed to the work of the National Care Standards Committee (NCSC) and continues to be of interest for the Care Commission. Research commissioned by the Executive in 1998 produced a literature review 8 and developed a research based tool for use by inspection teams to monitor the part played by quality of care in contributing to residents' quality of life. Although it was disseminated within the Executive, the various working groups of the NCSC and the Care Commission, the results of this project were never published.
5.4 The Accounts Commission (1999) evaluation of residential and nursing homes involved a self-selected sample of 39 homes. The survey undertaken included interviews with 318 residents and 47 relatives. The report concludes that quality could be improved in some homes without incurring extra cost by measures such as paying more attention to individual needs and requirements, developing better links with local communities, and integrated team working to give residents a smaller staff group to relate to. The report also includes many illustrations of good practice in involving residents and taking account of their individual needs.
5.5 Bland (1999) explores one of the main problems for older people facing admission to residential care - fear of losing their independence. Drawing on a wide range of literature relating to the development of institutional care, Bland compares two approaches to residential care provision. A case study of one private home illustrates the 'service' approach in which residents are treated as though they were hotel guests, their movements were not restricted and the normal conventions of privacy were observed by staff and residents alike. Staff treated residents, including those with dementia, as competent adults rather than as dependents in need of protection and residents needs and preferences were respected. Based on her own research and observation in care homes, Bland characterises the 'social care' approach as more akin to the hospital than the hotel. Overriding importance is attached in most care homes to minimising risk which leads to residents being kept under surveillance. Bland argues that the ideology of care implicit in this approach impedes the changes necessary to allow older people to retain their dignity and independence in a care home setting.
5.6 Quality of life in care homes from the point of view of residents is the subject of ongoing research by a team at Stirling University, part of the ESRC Growing Older programme 9. The research explores perceptions of quality of life of frail older people during and after their transition to institutional care. A range of methods is used to seek the views of around 50 residents of care homes in central Scotland. The methods used include 24-hour observation of life in the home; interviews; and observation with individual residents and the use of Talking Mats™ to support communication (Hubbard et al 2003; Murphy 1998). The final report of this research is expected in late 2003 and outputs include a video relating to sexual expression of older people in care homes.
Staffing issues
5.7 In their literature review on the role and world of the care assistant, Jacques and Innes (1998) highlight how little attention has been paid to this topic in spite of the increasing focus on person-centred care and the demands which this inevitably places on care staff. Jacques and Innes identify research which demonstrates the links between the experience of the care worker and quality of care. Jenkins and Allen (1998) for example, concluded in a study of stress and burnout in care staff that the degree of involvement which care staff felt they had in decision making was a "powerful predictor of resident-oriented care". The nature of person-centred care has potential rewards for unqualified staff in terms of emotion and self-esteem. However, Jacques and Innes point out that the realisation of person-centred care is jeopardised in a system in which care staff lack qualifications and status and are rewarded with low pay for physically and emotionally demanding work.
5.8 Marshall has also drawn attention to this neglected issue in her discussion of food in care homes. She questions the quality of care achievable when care staff themselves may be inadequately fed as a result of poor wages and when rules forbid them from sharing meals with residents (Marshall 2001).
Access to health care for care home residents
5.9 The availability of health care to residents is an important component of quality of care in care homes and there is some evidence that increasing numbers of older people may become isolated from new developments in health care as they enter a care home. This issue is highlighted in a joint working party report of the Royal College of Physicians (2000) on health and care in care homes. They quote McCormack (1998): "shortening lengths of stay in hospital, and a decreasing commitment of the NHS to long-term care have exposed older people to real risks of missing rehabilitative opportunities". The report goes on to detail the components of a desirable interdisciplinary approach to meeting the health and care needs of older people in care homes, and cites evidence of the positive impact on care outcomes achievable through the employment of specialist gerontological nurses (Ford et al 1998).
5.10 A study of staff attitudes to physiotherapy conducted in the mid 1990s throws more light on the accessibility of various forms of health care to residents in care homes (Chesson and Duthie 2000). The study, based on a sample of 20 private nursing homes in Grampian, aimed to establish the likely need for and current extent of physiotherapy services in such settings. The analysis deals with (a) attitudes of staff to the appropriateness of physiotherapy services for older people and (b) care home policies regarding activities of daily living and availability of outdoor activities and exercise classes.
5.11 Sixteen out of the 20 matrons/officers-in-charge interviewed said they would suggest referral to physiotherapy for a 92 year old man who had had a stroke. In half of the homes residents did not take any part in activities such as keeping their rooms clean and in 5 homes there were no exercise classes at all. In other homes classes were of varying frequency and in only 5 homes was there any physiotherapy input into exercise classes. The researchers commented that "despite research evidence that exercise is beneficial in maintaining function in older people, it was not a common feature of everyday life in homes surveyed". Some responses indicated low expectations of residents which the researchers felt might reflect ageism (Chesson and Duthie 2000).
5.12 Ageism is challenged by the relatively recent public recognition of palliative care as an appropriate 'person-centred' service for terminally ill and dying people in care homes, rather than exclusively for cancer patients. Palliative care explicitly recognises the spiritual, emotional, social and psychological needs of the patient as well as the physical and also depends explicitly on partnerships with relatives and other agencies (Hockley and Clark 2002).
5.13 The Bridges Initiative is a five year on-going palliative care project to develop knowledge of quality end-of-life care for the very old (to be completed in 2004). Findings from an initial survey of 73 independent nursing /dual registered homes in the Lothians are available from the project. 10 The Lothians survey is concerned with the increasing number of people who end their lives in private care homes and the arrangements made for their care. Seventeen of the homes surveyed had over 40 per cent of residents dying during 1999 (the survey year), and over a third of all deaths had occurred within the first year following admission. More than half of the homes which responded said they 'sometimes' employed extra staff when a person was dying and 5 homes (out of 49) said that they 'always' did. Comments provided by respondents suggested that nursing homes are isolated from both palliative care education for staff and from much of the multi-disciplinary advice and equipment available to other NHS patients. Fewer than half of the homes responding had regular visits from a GP. Nursing home staff did not have access to medical records in the way that community-based nursing staff do. Where available, physiotherapy services were put to good use.
Quality of care in other European countries
5.14 Different approaches to long-term care provision are discussed in a transnational study by Tester (1999). In the Netherlands, evaluation of a national quality assurance system found that the crucial components were multi-disciplinary assessment and individualised care planning for multi-disciplinary care; protection and promotion of the rights of people with dementia; and the expertise of trained staff. Opportunities for involvement of family and community volunteers in the home and for residents to participate in the local community were also found to be effective. The report does not comment on methods of eliciting residents' views. In both the Netherlands and Denmark the individual need for care or assistance is determined independently of the person's residence - a care plan is a legal requirement. This is in line with current policy in Scotland towards providing support for younger people with support needs (although not currently embodied in law). However much less attention has been paid in Scotland to the need for genuinely person-centred care planning for older people when they move into residential care.
Advocacy for care home residents
5.15 Only one evaluation of an advocacy service for older people was identified for this review (CITS 2000). The service in question offered advocacy support to physically and mentally frail older people in long-term care settings in Edinburgh. Support was limited to short term or crisis interventions and the service was prioritised towards people with no-one else to turn to and to people moving out of hospital. Advocates would help their 'partners' to make informed decisions, have them implemented and have opportunities to access other services needed.
5.16 Findings confirm that advocacy is valued by partners and is effective in helping them defend their rights (p 20). The nature of advocacy work needed longer term involvement than that envisaged by the project. The project's work was sometimes impeded by incomplete referral information and the partner's incomprehension of the advocate's role. The quality of relationship between advocate and agency was better when an understanding of the advocacy role had been established. In this project, individual advocates were responsible for assessing the need for advocacy of the partner to whom they were assigned. The evaluation notes that an alternative arrangement whereby the co-ordinator assessed the need and then matched advocates and partners accordingly would be worth considering.
5.17 Public promotion was seen as both complex and vital for the development of the advocacy service. The project planners had over estimated the initial response and a lack of appropriate referrals was soon evident. Personal visits to care homes, placements for trainee advocates and professionally designed posters were among the additional measures taken. The report concludes that these lessons might have been learnt from other advocacy projects since such experiences are not unusual (CITS 2000).
CARE HOME ADMISSIONS
5.18 The introduction of free personal and nursing care in Scotland will undoubtedly influence decisions about care but it is difficult to predict what the net effect on admissions will be. Of some interest therefore for this review is a large scale survey covering England, Scotland 11 and Wales funded by the Department of Work and Pensions which aimed to identify the circumstances and probable outcomes of people aged 65+ being admitted to care homes as self funders. The survey was designed to allow comparison with an earlier survey of publicly funded admissions. The earlier survey did not include Scotland. Key questions asked in the report include: "Why do people go into a care home? Are people being admitted unnecessarily? To what extent are older people themselves involved in the decision? What affects their choice of home?" (Netten et al 2001).
5.19 Conducted in 1999, the survey achieved a sample of 921 new admissions to 292 homes, 65 per cent of which were residential homes. Information about the resident and their admission to care was in the main collected from managers and, where available, a person providing unpaid care prior to the admission. The perspective of the older person being admitted to the home was not therefore a focus of this study.
5.20 The study found lower levels of physical dependence in people who were self funders, but a higher incidence of disorders and diseases especially depression and malignancy, compared with those who were publicly funded. Cognitive impairment was less prevalent amongst self funders - 27 per cent had none compared with 20 per cent of publicly funded people and 16 per cent had severe impairment compared with 24 per cent (using Minimum Data Set Cognitive Performance scale (Morris et al 1994)). There was no statistical difference in behavioural problems between the two samples.
5.21 Prior to admission to the home: 21 per cent did not receive any services; 55 per cent were receiving some form of home care; 46 per cent received local authority organised home care on average 8 hours per week compared with 24-hours per week for users of privately organised home care. Comparison with the earlier survey found that publicly funded people admitted were more likely to have received home care (64 per cent) and received more hours on average.
5.22 The researchers suggest that admission of people with lower levels of dependency may reflect lack of access to adequate support at home - there was some evidence of frustration with level of service offered from comments added by relatives to the questionnaires. Not only were self funders receiving lower levels of care, the most able residents also exhibited a high level of unmet need for social participation and involvement prior to admission. It seemed likely that more self funders might have chosen to live in a care home because of their need for company.
SUMMARY
5.23 There has been a substantial amount of research on care homes focusing on quality of life for residents, research which has helped to formulate the principles and standards embodied in the National Care Standards. More detailed research on models of care would be useful in identifying how the principles and standards are realised in practice. The role of care staff and the relationship between job satisfaction and quality of care is a neglected area which has obvious relevance for management, training and quality assurance purposes.
5.24 More research is also needed to examine access to health care for care home residents as an issue of social justice. Studies of physiotherapy and palliative care address some important aspects of health care for frail older people. These studies draw attention to the risk of nursing staff in care homes being isolated from information and knowledge current in primary care teams and of ageist attitudes influencing access to specialist services for care home residents.
5.25 Experience in Denmark and the Netherlands suggests the possibility of moving towards a person-centred approach to residential care by distinguishing the care plan from the accommodation and challenging the rigidity of the care home service by offering more intensive support in a range of settings.
5.26 A study of one advocacy service for care home residents found that demand for and understanding of the service should not be taken for granted and that public promotion was essential to ensure take up (CITS 2000). The evaluation also found that longer term involvement by advocates with their partners was needed than had originally been envisaged by the project.
5.27 UK wide research on people admitted to care homes on a self-funding basis revealed that they had received relatively less in the way of support services prior to admission than publicly funded people (in and earlier survey) (Netten et al 2001). Self funding people were less likely than publicly funded ones to be physically dependent, but more likely to suffer from diseases or depression and to have experienced social isolation in their own homes. These findings suggest that there is unmet need for community-based services offering social contact and interest as opposed to intensive personal care.
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