Dementia care at home in rural and remote areas Summary findings of literature review

Transcription

1 Dementia care at home in rural and remote areas Summary findings of literature review This is a short summary of a literature review undertaken as part of a one year knowledge exchange project between UHI Millennium Institute, Scottish Agricultural College, Orkney Islands Council and Scottish Borders Council. The project was part of a wider programme aimed at building capacity for research evidence to inform local authority service improvement. The full report is available to download from (Clark A, Bradford L and Robertson J (2010)) Main findings August 2010 The review uncovered a fairly limited literature on dementia care at home in rural and remote areas and few evaluations of innovative approaches to dementia services. Research has demonstrated that people with dementia can express reliable views about experiences of services and innovative ways of engaging people with dementia are being developed. However practice still lags behind other areas of user participation in health and social care. People with dementia and their carers often identify gaps in services but they are generally positive about the services received. A key theme to emerge from the literature was diversity: of location, need and impact of rurality on experiences. Carers in rural areas face the same difficulties as elsewhere but in addition may experience social isolation and poorer services. More flexible respite, information at the right time and services that meet individual needs have been identified as important. Providers of dementia services in rural and remote areas have identified a range of challenges including distance, lack of transport and shortages of skilled staff leading to increased costs and a more limited choice of services than in urban areas. A key dilemma is balancing the need for specialist services against improving access to mainstream preventative services for older people. Approaches to service innovation have included very localised service delivery, peripatetic outreach services, mobile services, community development approaches and joint working, e.g. using hub models to provide the critical mass necessary for sustainable services. Careful analysis of the demographic, geographic and community context of rural areas is necessary for successful service innovation. The research team acknowledge the support of the scheme partners: the Scottish Funding Council (SFC); the Economic and Social Research Council (ESRC); and the Local Authority Research Council Initiative (LARCI supported in Scotland by The Scottish Government) in the funding of this project. Authors: Clark A and Nimegeer A.

2 Dementia care at home in rural and remote areas Summary findings of literature review Local authorities have a key role to play in delivering community support services to the estimated 69,000 people in Scotland with dementia. National policy encourages councils to improve outcomes for older people by delivering integrated and personalised services which enhance independence and quality of life 1. Implementing the personalisation agenda for people with dementia and their carers presents a variety of challenges including tackling stigma, professional tribalism and risk aversion 2. With a projected 75% increase in numbers of people with dementia by 2031 and pressures on public funding, it is increasingly important that councils make best possible use of all available evidence about what works. This is a summary of evidence from a review of published literature on dementia services at home in rural and remote areas. Rural and Remote Service Challenges The traditional challenges faced by both providers and users of health and social care services in rural and remote areas have been well documented 3 (Box 1). The most extensive study to date of dementia services in rural and remote Scotland echoes the general literature on rural service challenges 4. Problems identified included distance, lack of transport and shortages of skilled staff leading to increased costs to users and a more limited choice of services than in urban areas. A key dilemma facing service providers was balancing the need for specialist services for people with dementia against improving access to mainstream older people s services. Similar issues have been raised in a mapping exercise of dementia services in rural areas of England 5. Rural and Remote Service Challenges The demographic structure of rural regions often makes it difficult to achieve the economies of scale necessary to support public service provision Sparsity of population, long distances, poor transport and workforce issues make access more difficult, increase costs, reduce choice and quality Third and private sector organisations tend to be fewer and more fragile making it difficult to develop a mixed economy of care and build capacity for involvement of communities Complex relationships between staff and communities have both positive and negative effects. Complex and shifting dynamics between communities and service providers can make change particularly difficult Box 1 2

3 Users and Carers Experiences of Services In the past, it was assumed that people with dementia were unable to offer views about their experiences of services. Carers and staff involved in their care were often consulted as proxies. Service providers may still overlook the views of people with dementia 6 and practice still lags behind other areas of user participation 7. However various factors have contributed to new ways of thinking about dementia and the possibilities for inclusion of people with dementia in research and service consultation: The work of Kitwood fundamentally challenged professional thinking about the capacity of people with dementia 8 New drug therapies are delaying changes in capacity for longer Tools such as Talking Mats 9 are enabling more effective communication between service providers and people with dementia Research in the 90s demonstrated that people with dementia could express reliable views about their experiences of services 10 The experiences of people with dementia and their carers receiving services in rural and remote areas has been researched in Ireland, Australia, Canada and America as well as in parts of Europe. Issues explored have included levels of use of services and barriers to use 11, differences between urban and rural experiences 12, how rurality impacts on experiences 13 and the effectiveness of specific interventions to improve access such as telecare 14. Overall the evidence suggests that people with dementia and their carers living in rural and remote areas can access fewer services and have less choice of services. Common barriers to access identified internationally include: The stigma associated with dementia Privacy issues The cost and appropriateness of services Acceptability of services e.g. timing, type of activities Beliefs and attitudes e.g. self reliance, standards of care Transport and distance Lack of services including respite, home care, day care People with dementia and their carers often identify gaps in services but they are generally positive about services actually received 15. What rural users and carers value about the services they receive has some similarities with the outcomes sought by them in other studies. (Table I) Research has demonstrated that people with dementia can express reliable views about experiences of services and innovative ways of engaging people with dementia are being developed. However practice still lags behind other areas of user participation in health and social care. Quality of life issues Bamford & Bruce (2000) Frances & Netten (2004) Social Policy and Admin Vol38/3 Choice about and access to activities Sense of control and identity Security Hygiene & comfort Innes et al (2006) Activities reflect interests and stimulate Social interaction with staff and others High standards of care How services are delivered Having a say Feeling valued Reliability Continuity Timing Attitudes of staff Treated as an individual Flexibility Communication Staff attitudes and motivations Table 1 3

4 A key theme to emerge from the literature was diversity: of location, need and impact on experiences 16. The rural idyll of supportive communities is not a universal experience 17. People with dementia and their carers experience both positive and negative influences on services from living in a rural location (Table 2). Characteristics of rural location Positive Influences Negative Influences Rural Landscape Community support Community surveillance Close-knit relations with staff Improves access and increases personalisation Change difficulty; fears re confidentiality Culture of self-reliance Tolerance of difference Stigma/fear of gossip Strong community ties Table 2 Strong informal, practical support Isolation if no local networks Carers in rural areas appear to face the same difficulties as those elsewhere but in addition may experience social isolation and poorer services. Carers have identified more flexible respite, information and greater access to more appropriate services as important. Accessing information at the right time is also important in preventing matters reaching a crisis point 18. Responses of Service Providers Studies have identified various approaches to tackling the challenges faced by service providers of health and social care in rural and remote areas 19 (See Table 3). Smith and Homer (2009) found a wide range of service innovations including some for dementia services. Many service changes were opportunistic rather than planned and strategic. The process of achieving change in rural and remote areas required additional resources for staff and community engagement. Several authors agree that although the challenges may be similar, it cannot be assumed that what works in one area will work in another 20. Reasons include population structure, geography and local service histories 21. Asthana & Halliday Hudson Smith and Homer Improve co-ordination, avoid duplication Flexible roles and responsibilities Mobile, outreach services and multi-purpose facilities Appropriate and affordable transport Improving information for professionals Improve gateways and signposting for users Reducing distance through technology Workforce strategies for recruitment and retention, new roles and team working Supporting independence e.g. extra care housing Area based strategies community development Rural proofing of national, regional and local policies Partnership strategies Partnership working Co-location/integration of community services Workforce strategies Strategies to build community resilience Table 3 Like Innes et al (2006) this review uncovered few evaluations of dementia services in rural and remote areas in the UK. The use of village halls and other community buildings to provide day care has been evaluated in Northern Ireland. Services were valued but could have offered more individualised provision. Careful analysis of the demographic, geographic and community context of rural areas is necessary for successful service innovation 22. Peripatetic and mobile day care services include use of a bus to collect people and drop them off at pubs and other locations for lunch and to do activities 23. In rural England, partnership working and dementia champions have been found to make a difference to services. Approaches have included very localised service delivery, peripatetic outreach services and using local people to act as signposts and to stimulate community responses 24. 4

5 In remote and rural Scotland, Innes et al (2006) found that interventions tended to be around transport solutions, outreach services and joint working to overcome accessibility problems. They suggested that greater flexibility in the use of resources and provision of services, improved information provision, specialist advisers and care managers and better joint working were all needed. Hub models can provide the critical mass necessary for sustainable services in rural areas 25. Thomson Court on the Isle of Bute provides a range of services with staff working across all to provide continuity and flexibility of care. Staff raise awareness of dementia in the community, provide activities which reflect rural interests and support people to carry on activities in the community 26. A significant debate in the wider dementia services literature concerned the effectiveness of specialist as opposed to generic services 27. Systematic reviews of interventions for carers identify a range of success factors for services but say little about issues specific to rural carers 28. Carers UK recommend a number of good practice responses to the needs of rural carers including wider respite opportunities, transport solutions, and using local media to raise awareness of services 29. Interventions focused on reducing social isolation and combining social opportunities with education include Alzheimer Cafés and use of the telephone to provide information, support and education 30. Providers of dementia services in rural and remote areas have identified a range of challenges including distance, lack of transport and shortages of skilled staff leading to increased costs and a more limited choice of services than in urban areas. A key dilemma is balancing the need for specialist services against improving access to mainstream preventative services for older people. The Scottish Government has invested heavily in assistive technology (telecare) interventions but there are some difficulties associated with managing response arrangements in rural areas 31. Benefits of telecare include helping people to live longer in their own homes, reduced hospital admissions, reduction in consequences of risks and reduced service costs. The approach of West Lothian Council has been positively evaluated 32. Concerns about telecare include possible adverse impact on inclusion and personalisation, resistance from service providers, design and structural issues and the danger of technology replacing personal contact 33. Extra care housing, or self contained dwellings that offer flexible care and a homely environment were another featured intervention, although not specifically in rural and remote areas. On the one hand they were seen as helping older people to maintain autonomy, something that people with dementia consider important, creating a normal non-institutional environment, and offering specialist services 34. On the other hand, extra care housing may be somewhat isolating and may not be suitable for people with advanced dementia. More research into the benefits and drawbacks of this type of housing for people with dementia is required 35. 5

6 References 1 Scottish Executive (2005) Better Outcomes for Older People: Framework for Joint Services Summary, Edinburgh, Scottish Executive 2 Department of Health/Association of Directors of Social Services (2009) National Dementia Strategy Objective 6 Improved community personal support: Think Tank Report. tentid= OECD (2006) The New Rural Paradigm:Policies and Governance OECD Publishing; Hudson(2009) Supporting People in Remote and Rural Areas: A Framework for Analysis, Edinburgh, Joint Improvement Team publications; Craig and Manthorpe (2000) Freshfields Rural Social Care: Research, Policy and Practice Agendas, York, JRF York Publishing Services; Smith M and Homer T (2009) A Review of Service Development and Innovation in the Delivery of Joint Health and Social Care and Support Services in Rural and Remote Areas. Edinburgh, Scottish Government/NHS Scotland 4 Innes et al (2006) Service provision for people with dementia in rural Scotland difficulties and innovations. Dementia, Sage Publications Vol 5(2) pp Heath B (2005) Alone with Dementia in Rural Areas: Service Mapping and Case Studies, Dementia Focus mapping%10with%20case%20studies%20%2015%2009%pdf 6 See 4 above 7 Cantley C, Woodhouse J and Smith M (2005) Listen To Us: Involving People with Dementia in Planning and Developing Services Newcastle, Dementia North 8 Kitwood T (1997)The experience of dementia. Aging and Mental Health Vol 1(1) pp Murphy J, Gray C and Cox S (2007) Using Talking Mats to help people with dementia to communicate. York, Joseph Rowntree Foundation 10 Bamford C and Bruce E (2000) Defining the outcomes of community care:the perspectives of older people with dementia and their carers, Ageing and Society Vol 20 pp ; Wilkinson H (ed) (2002) The Perspectives of People with Dementia: Research Methods and Motivations. London, Jessica Kingsley Publications 11 Morgan D G et al (2002) Rural Families Caring for a Relative with Dementia: Barriers to Formal Services. Social Science and Medicine Vol 55 pp ; Wenger GC et al ( 2002) The experience of caring for older peole with dementia in a rural area: using services. Ageing and Mental Health 2002; 6(1): Tommis, Y, et al ( 2007) Rural urban differences in the effects of mental well- being of caring for people with stroke or dementia. Ageing and Mental Health 2007; 11(6): Blackstock KL et al ( 2006) Living with dementia in remote and rural Scotland: Diverse experiences of people with dementia and their carers. Journal of Rural Studies 22 pp Glueckauf RL, et al (2005) Alzheimer s Rural Care Healthline:Linking Rural Caregivers to Cognitive Behavioral Intervention for Depression. Rehabilitation Psychology Vol50 (4) pp See 4 above 16 See 13 above 17 Wenger 11 above and Pugh et al (2007) Research Briefing 22: Obstacles to Using and Providing Social Care. London. Social Care Institute for Excellence 18 Wenger 11 above and Smith and Homer 3 above; Hudson 3 above and Asthana S and Halliday J (2004) What can rural agencies do to address the additional costs of rural services? A typology of rural service innovation. Health and Social Care in the Community 12 (6), Smith and Homer 3 above; Hudson 3 above, Asthana and Halliday 19 above and Pugh 17 above 21 Smith and Homer 3 above 22 Gibson F and Whittington D (1995) Day Care in Rural Areas: Social Research Findings 72. York. Joseph Rowntree Foundation 23 Craig G and Manthorpe J (2000) Freshfields Rural Social Care: Research, Policy and Practice Agendas. Joseph Rowntree Foundation York York Publishing Services. 24 MacDonald A and Heath B (2006) Alone with Dementia in Rural Areas: Report for Department of Health, Executive Summary. Dementia Focus executive%20summary%203%20april% pdf 25 Smith and Homer 3 above 26 Fisher E and Moriarty J (2005) Thomson Court: Integrating long-term care and community care in a rural community. Dementia Vol 4 p Riordan,J, M and Bennett, A, V( 1998) An evaluation of an augmented domiciliary service to older people with dementia and their carers. Ageing and Mental Health 1998(2): ; Venables, D et al (2006) Standards of care in home care services:a comparison of generic and specialist services for older people with dementia, Aging & Mental Health,10:2, ; Gladman et al (2007) Person centred services are feasible but can they be sustained? Age and Ageing Vol 36 pp ; Rothera et al (2008) An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. Int. Journal of Geriatric Psychiatry Vol 23 pp Jeon YH, Brodaty H and Chesterson Jon (2004) Respite care for caregivers and people with severe mental illness: literature review. Journal of Advanced Nursing, 49(3), ; Lee H, Cameron M. (2004) Respite care for people with dementia and their carers. The Cochrane Database of Systematic Reviews, Issue 1. Art. No.: CD pub2. DOI: / CD pub2.; Victor E (2009) A Systematic Review of Interventions for Carers in the UK: Outcomes and Explanatory Evidence. London, Princess Royal Trust For Carers 29 Carers UK ( 2003) Policy briefing- Rural Carers PolicybriefingsUKwide 30 See 29 above; 14 above and Baldwin C and Mackenzie J (2008) Service needs and delivery following dementia diagnosis: evidence based review. London. Commission for RuralCommunities. 31 Joint Improvement Team (2008), Telecare in Scotland: Benchmarking the Present, Embracing the Future. org.uk/actionareas/themes/telecare.html; Smith and Homer 3 above 32 See e.g. articles in Woolham, J (ed) Assistive Technology in Dementia Care London. Hawker Publications; Bowes A and McColgan G (2006) Smart technology and community care for older people: innovation in West Lothian, Scotland. Edinburgh, Age Concern Scotland 33 See e.g. Beech R and Roberts D (2008) Assistive technology and older people London. Social Care Institute for Excellence 34 Bevan M, et al (2006) The housing and support needs of older people in rural areas. Commission for Rural Communities/Housing Corporation; Croucher K, Hicks L, Jackson K (2006) Housing with Care for Later Life: A Literature Review. York. Joseph Rowntree Foundation.; Dutton, R (2009) Extra Care Housing and People with Dementia: A Scoping Review of the Literature. Beaconsfield. Housing and Dementia Research Consortium 35 See 34 above 6