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ESRC Engaging Local Authorities Scheme

Building Capacity for Evidence Informed Practice in Rural and Remote Island Social Service Delivery

“What is considered the ‘state of the art’ in providing high quality social care at home to people with dementia in rural and remote

areas and can it be applied in my local authority?”

Report of A Literature Review

Compiled by Clark A, Bradford L and Robertson J.

February 2010

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CONTENTS

1. BACKGROUND 2. PROCESS AND SCOPE OF REVIEW 2.1. Process 2.2. Search Strategy 2.3. Limitations of review

3. OVERVIEW OF POLICY AND RURAL SERVICE CHALLENGES 3.1 Dementia Care Policy 3.2 Rural Service Challenges

4. VIEWS OF PEOPLE WITH DEMENTIA AND THEIR CARERS 4.1 Researching users views 4.2 Experiences of rural dementia services 4.3 Service outcomes 4.4 Support for carers

5 RESPONSES OF SERVICE PROVIDERS 5.1 Overview 5.2 Dementia Care at Home 5.3 Assistive Technology 5.4 Extra Care Housing

6 PRACTITIONERS VIEWS ON FINDINGS

APPENDIX ONE: BIBLIOGRAPHY APPENDIX TWO: KEY WORDS APPENDIX THREE: SOURCES SEARCHED

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1. BACKGROUND 1.1 Local authorities have a key role to play in delivering public services

and improving the health and wellbeing of Scotland. They are expected to contribute to achieving the Scottish Government’s national outcomes and to continuously improve their performance in doing so.

1.2 To assist in strengthening the capacity of local authorities to use

research evidence to inform service improvement efforts, a partnership of the Scottish Funding Council (SFC), the Economic and Social Research Council (ESRC) and the Local Authority Research Council Initiative (LARCI) is funding five knowledge exchange projects between Scottish researchers and local authorities.

1.3 Knowledge exchange is about exchanging good ideas, research

results, experiences and skills to enable innovative new products, services and policies to be developed. The aims of the pilot scheme are:

• to build capacity within local authorities for the use of evidence to inform service delivery

• to improve the usefulness of academic research to local authorities and

• to meet the immediate knowledge needs of local authorities in practical ways.

1.4 This particular knowledge exchange project is a partnership

between the University of the Highlands and Islands Millennium Institute (UHIMI), Scottish Agricultural College, Orkney Islands Council and Scottish Borders Council. Discussions revealed that providing high quality dementia care at home was a pressing topic for both local authorities. Following the gathering of evidence from: the research literature, service providers and people with dementia and their informal carers, improvement plans for dementia care services will be produced. Training will be provided to local authority staff in research skills and evidence use and a plan prepared for the future use of evidence in the local authority. Lessons will be learnt on both sides about how academics and local authorities work, long term relationships and networks developed and ideas for improving knowledge exchange in the future identified.

1.5 One of the first activities undertaken was the placement of a

member of staff from Orkney and Scottish Borders with the academic institutions, to carry out a review and synthesis of current evidence on dementia care at home. This is a report of the outcome of the review and the lessons learnt from the process.

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2. PROCESS AND SCOPE OF REVIEW 2.1 Review Process 2.1.1 The process began with a four day placement during which the local

authority staff attended UHIMI in Inverness and visited the Dementia Services Development Centre at the University of Stirling. Input was provided by researchers at UHIMI on skills in finding and using research evidence and at DSDC on the current state of research into dementia care in rural and remote island areas. Time was devoted to discussing the search strategy and how the review would be completed. Finally some limited searching was undertaken.

2.1.2 Following this initial placement, collaboration on the review

continued remotely with researchers at UHIMI, with contact being maintained by email, tele and video conferencing. One further face to face all day meeting took place. Local authority staff undertook much of the searching and summarised relevant literature with support and guidance from academic staff. Researchers undertook additional literature searching, supported the analysis and synthesis of the findings and compiled this report.

2.1.3 The original project proposal envisaged the review covering a wide

range of sub topics including: services at home, housing, partnerships, technology, measuring quality and rural and remote island proofing. The intention was to obtain feedback on the synthesis from a wider group of practitioners in each local authority area at a ‘virtual’ joint seminar.

2.1.4 During the initial placement it became apparent that the task as

originally envisaged could not be carried out within the time available. The expectations of practitioners with demanding operational workloads (even those with some previous experience of higher academic study), were too great and the literature was too extensive. Another significant constraint was that most of the work had to be undertaken remotely. This limited the local authority staff’s access to electronic journals and was perceived by them to lead to some duplication of effort. Considerable commitment, resilience and flexibility were required of everyone involved to reshape and complete the review.

2.1.5 The eventual scope of the review is described below. The core

material for the seminar was a presentation by the local authority staff on their findings, accompanied by an annotated bibliography. The feedback received at the seminar is reported in section four. This report and synthesis was compiled following the seminar and also draws upon additional literature searching undertaken by academic staff.

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2.2 Search Strategy 2.2.1 This review was undertaken to provide new insight into a topic to

inform evidence based practice in social care. The project resources were insufficient for a systematic review, rather the aim was to take a systematic approach. This was seen as including: a well defined research question, an appropriate search strategy, good record keeping and following scholarly conventions such as referencing and the considered representation of evidence (Aveyard 2007, Hart 1998).

2.2.2 The overall focus of the project is dementia care at home and a

range of potential topics were proposed for inclusion in the literature review. After discussion of the time available, the skills and knowledge of the local authority staff and what knowledge would be most useful to their organisations, the following research question was agreed:

“what is considered the ‘state of the art’ in providing high quality social care at home to people with dementia in rural and remote areas and can it be applied in my local authority?”

2.2.3 It was agreed that a variety of interpretations might be placed on

the term ‘social care at home’. For the purposes of this exercise it was agreed that the search would definitely include: home care, day care, respite care, assistive technology and housing with care. Other services would be included only if time permitted. It was also recognised that different groups of people with dementia would have particular needs. However resources dictated that this search was limited to older people with dementia.

2.1.4 A list of key words was drawn up and used whilst searching

appropriate databases. The list was refined following some initial searching. The list was also considered by the Research Advisory Group and further refined for the final stages of the literature search. (See Appendix Two for list of key words)

2.1.5 The main resources used for the literature search were the

databases of electronic journal articles available through UHIMI, NHS E-Library and the University of Stirling (through their library at the Centre for Health Science). Google Scholar proved a popular option with local authority staff as they found it easy to use and less time consuming. Google Scholar is based on citations and therefore may not pick up recent work. The researchers used other databases to run cross checks to compensate. A full list of databases and websites searched is at Appendix Three.

2.1.6 Initial searches uncovered a considerable literature on dementia

services and the search strategy was prioritised by date (1995 and beyond), relevance to rural and remote island communities and evidence of innovation. A difficulty which emerged was the lack of literature directly related to rural and remote areas. The strategy

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had to be widened again to include more general literature on rural services, dementia services and social care for older people. Abstracts and citation records were used to determine potential relevance. Where the literature on a particular topic was substantial, priority was given to systematic reviews in the first instance. Where the search found no literature specifically on rural and remote areas but wider lessons were of particular interest to the local authorities – e.g. on assistive technology and extra care housing - this was included.

2.1.7 The time available put restrictions on the search and it should not

be regarded as exhaustive. In addition little use was made of monographs or key text books. A significant amount of research in dementia care has been undertaken in America. Some of this was available in international publications however a number of important American journals were not accessible using the resources available. The search was restricted to articles available in the English language.

2.1.8 Templates were used to assist local authority staff to assess the

relevance of the literature and accurately represent research findings and authors’ views. About one half of the articles found to be useful were read by more than one member of the team which provided an additional quality control.

2.1.9 Apart from a relative lack of literature specifically addressing

service delivery in rural and remote island areas there were a number of gaps and issues identified:

• More evidence is available on the difficulties and challenges of current service provision than on the effectiveness of innovative solutions

• Social service models and interventions are difficult to research for a number of reasons. In particular it is difficult to undertake high quality randomised control trials. Evidence of impact and outcomes tends to be qualitative in nature.

• Possibly due to the time lag which often exists between research and publication, the literature did not appear to offer a great deal of guidance on important current policy issues such as personalisation. It was perceived to lag behind practitioner’s own knowledge of current practice.

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3 OVERVIEW OF POLICY & RURAL SERVICE CHALLENGES 3.1 Policy Overview 3.1.1 As recently as 2002, the relatively low priority accorded to

dementia services by national policy makers was seen as contributing to the social exclusion of older people with dementia (Innes 2002). Since then, predictions about the likely rise in numbers of people with dementia, coupled with official concerns about the quality of care being provided, have led to the publication of national strategies (in draft form to date in Scotland) (Audit Commission 2000, National Audit Office 2007; Mental Welfare Commission/Care Commission in Scotland 2009, Department of Health 2009; Scottish Government 2009).

3.1.2 Dementia services have also been significantly affected by a

plethora of wider national policy developments in public services, especially in relation to the health and social care of older people and people with mental health problems (Better Outcomes for Older People Scottish Executive 2005, Direct Payments; Mental Health Framework HDL 44 on dementia services Scottish Executive 2004; National Home Care Standards; Better Health Better Care Scottish Government 2007, National Clinical Guidelines SIGN/NHS QIS 2006, Adults with Incapacity Act 2000). These developments have been driven by both a need for greater efficiency and effectiveness in the use of public money and a desire to improve the outcomes of services for older people.

3.1.3 The key policy messages currently underpinning social care services

for older people with dementia include: • Taking an ‘outcomes’ rather than service led approach to the planning, commissioning, delivery and evaluation of services

• Promoting a personalised approach to needs assessment and service delivery which maximises individual and community resilience and enhances independence and quality of life

• Empowering older people by their greater involvement in decision making

• Recognising and valuing informal carers of older people as partners in care and supporting them to care for as long as they wish to

• Joint working with health and other partners to deliver co-ordinated and integrated services to older people

• Joint working between service providers, service users and carers and other stakeholders to ‘co-produce’ services.

3.1.4 The Scottish Government’s current policy is to ‘mainstream’ consideration of rural issues and there are no specifically rural policies in relation to social care or dementia. Rural development support strategies are largely based around European funding frameworks such as LEADER and these recognise the importance of

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community service activity in rural areas. In recent years interest in the challenges of rural service provision has grown and a variety of rural and remote area initiatives have been supported in health (Scottish Government 2008). The allocation of funding to address rural service challenges continues to be a contentious issue (Hudson 2009).

3.1.5 The cultural and organisational changes required to fully implement

the current policy agenda in social care for older people are considerable. Some aspects of the changes required may be particularly difficult in relation to services for people with dementia and for rural and remote local authorities.

3.1.6 The particular challenges of implementing a personalisation agenda

for people with dementia in England have been explored in a recent literature review and ‘think piece’ for the Department of Health and Association of Directors of Social Services (National Dementia Strategy Objective 6 Think Tank Report 2009). Challenges faced by providers of community social support to people with dementia were felt to include: stigma, professional tribalism and risk aversion. Some evidence from the literature review by Manthorpe included in this publication, suggested that people with dementia may have less choice if generalist services such as day centres close as a result of personalisation.

3.1.7 The Commission for Rural Communities has recently published a

review of the opportunities and challenges of implementation of the personalisation agenda in rural areas in England (Manthorpe and Stevens 2008). Drawing on the experiences of pilot authorities for Individual Budgets and interviews with 33 stakeholders in rural areas, a wide range of issues were raised for government, service providers, the voluntary sector and older people. Whilst personalisation was seen as an opportunity to address the lack of choice of services experienced by older people in rural areas, some concerns were expressed about the possible impact on resource allocations, community social cohesion and the workforce. The importance of the voluntary sector and older people’s advocacy organisations in implementation of this approach were highlighted.

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3.2 Rural Service Challenges 3.2.1 The difficulties faced by rural regions in delivering public services

are well documented internationally. The OECD in its 2006 report ‘The New Rural Paradigm’ notes that: “The demographic structure of rural regions is often not appropriate to support provision of local public services. Because these regions have difficulty in establishing the necessary critical mass of facilities, producer services and infrastructure… the economy does not generate employment opportunities and there are strong incentives for young people to move away……”

3.2.2 The impact of these macro level forces on rural health services

providers are increasingly well evidenced across the world. Hudson (2009) identifies common service delivery problems of access, costs to providers and users, workforce issues and quality outcomes. Sparsity of population, geography, poor transport infrastructure, difficulties in recruitment and retention of skilled staff and professional development issues are commonly identified as contributing to service delivery problems in rural health and social care (Craig and Manthorpe 2000, Asthana and Halliday 2004, Baldwin and Mackenzie 2008, Hudson 2009).

3.2.3 A review of literature on rural social care provision by Craig and

Manthorpe found that rural service providers were most concerned about additional costs arising from a lack of economies of scale and inappropriate funding mechanisms. Transport and workforce problems were also mentioned. Difficulties of service provision in rural areas led to a variety of problems for service users including poor access, higher costs, isolation and associated health problems (Craig and Manthorpe 2000). More recently, Pugh et al (2007) concluded that overall, people in rural areas are less likely to receive health and social care services than those in urban areas. Increased costs fall on both providers and users due to geography, more dispersed populations, poor transport provision and less availability of buildings and facilities. Independent sector and voluntary sector organisations tend to be fewer and more fragile in rural areas, making it more difficult to develop mixed economies of care or build capacity for involvement of users and carers.

3.2.4 In rural and remote communities there are complex relationships

between service providers and communities. Local care staff are very ‘visible’ (as are people with dementia) and may be privy to personal information about service users from being a member of the same community (Blackstock et al 2006; Smith and Homer 2009). Care providers may play a variety of roles within the community and play an entrepreneurial role which has an impact on a community’s capital beyond people’s health and wellbeing

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(Farmer et al 2010). Community views on care services may be influenced by a complex mixture of history and tradition. These complex and shifting dynamics mean that bringing about changes to service provision in rural and remote communities can be particularly challenging (Smith and Homer 2009).

3.2.5 The most extensive work on dementia services in rural Scotland has

been undertaken by Innes and colleagues. Problems reported by service providers echo the literature on rural service challenges more generally: distance and lack of transport, cost to the user, lack of choices in services and shortages of skilled staff (Innes et al 2006). They identified a central problem around balancing the need for specialist services with improving access to mainstream services in rural areas. These issues were also raised in a mapping exercise of dementia services in rural areas of Suffolk, Cambridgeshire and Norfolk (MacDonald and Heath 2006). Key barriers to service delivery included: travel, finding suitable office accommodation, lack of specialist dementia training, staff recruitment and retention and the ‘culture’ of rural areas.

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4. VIEWS OF PEOPLE WITH DEMENTIA AND THEIR CARERS 4.1 Researching Users Views 4.1.1 In the past, it was assumed that people with dementia were unable

to offer views about their experiences of services and their carers were often consulted as ‘proxies’ (Bamford and Bruce 2000). Developments in professional thinking about dementia and the possibilities of communicating with people with dementia have changed over the last 20 years or so (Walker et al 2001, MacDonald 2004, Bartlett and O’Connor 2007).

4.1.2 Probably the most significant contribution to this change has been the work of Kitwood, who challenged the biomedical model of people with dementia as sufferers of an unpleasant and inevitably degenerative condition (Kitwood 1997). Kitwood’s use of the idea of ‘personhood’ drew upon a more humanistic approach to dementia which argued that social relationships and how a person with dementia was treated, rather than just the disease itself, influenced how people experienced living with dementia. The ‘personhood’ approach has been challenged in its turn, as writers argue that an even wider lens of ‘citizenship’, encompassing rights and the ability to participate in community life, should be applied to dementia research (Bartlett and O’Connor 2007).

4.1.3 New drug therapies which hold out the hope of delaying changes in mental capacity and the development of new techniques for communicating with people with dementia are reinforcing these new ways of thinking about dementia and the possibilities of research (Bartlett and O’Connor 2007). Research has shown that it is possible and desirable to include the views of people with dementia in research and involve them in service consultation (Wilkinson H (ed) 2002, Bamford and Bruce 2000, Allan 2001). Tools such as Talking Mats have been found effective in enabling service providers to hear the views of people with dementia (Murphy et al 2007). However Innes et al found from their research that service providers still appeared to be generally overlooking the views of people with dementia (Innes et al 2006). It would appear that involvement of people with dementia still lags behind participation practice in other areas of health and social care services (Cantley et al 2005).

4.2 Experiences of Rural Dementia Services 4.2.1 The majority of social research on dementia has taken place in

urban locations (Blackstock et al 2006). However the experience of people with dementia and their carers living in rural 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 (Morgan 2002, Wenger 2002), differences between urban and rural experiences (Tommis et al

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2007), how rurality impacts on experiences (Blackstock et al 2006) and the effectiveness of specific interventions to improve access such as telecare (Glueckauf et al 2005 ). The evidence suggests that people with dementia and their carers living in rural areas can access fewer services and have less choice of services. Rurality has both positive and negative influences on the experience of living with dementia as a user or carer. Common barriers to accessing services include: stigma associated with dementia, privacy issues, financial barriers, acceptability of services, beliefs and attitudes, transport and distance (Morgan 2002, Innes et al 2006).

4.2.2 In Scotland, publications by Innes and colleagues, based on their

2002 research ‘Service Provision for People with Dementia and their Carers in Rural and Remote Scotland’, form the main body of work about dementia in rural areas (Innes et al 2002, Blackstock et al 2006, Innes et al 2006). Reporting on the experiences of people with dementia and their carers, 35 out of 45 participants identified gaps in service provision. Services were also refused by 26 participants because they were unsuitable for their needs. The main gaps in services identified were transport, support for carers including respite care, home care and day care. Problems included a lack of services and the need for services to be provided in a way that better suited the needs and circumstances of people with dementia and their carers. Issues included the timing of available services, whether activities reflected individuals’ personalities and interests, anxiety about the skills of staff and standards of care. The needs of people with dementia and their carers appeared to be as diverse as their rural locations.

4.2.3 Those in receipt of services had generally positive views of their

worth (Innes et al 2006). Positive aspects of services mentioned by service users included: receiving services appropriate for their individual needs and preferences, the love and care displayed by staff, social interaction with staff and other users, stimulation from activities and good interpersonal relationships.

4.2.4 Research in rural communities has challenged traditional notions of

the ‘rural idyll’ and policy responses which assume rural communities are supportive of those with health and social care needs (Wenger 2002; Pugh et al 2007). Drawing on the research referred to in para 4.2.2, Blackstock et al explored the diversity of experiences of dementia in rural areas and the manner in which people’s rural location influences their experiences of services (Blackstock et al 2006). The majority of users and carers in their study thought they were better off living in a rural area and invoked images of resilience and supportive rural communities shaped by their rural locality. However people’s individual stories demonstrated a much more diverse experience of living with dementia in a rural area, with both positive and negative aspects.

4.2.5 The close-knit and interconnected personal and professional

relationships between service providers, users and carers were felt

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to improve access to services and increase the personalisation of care. Strong informal practical and emotional support from friends and neighbours was seen as a central aspect of rural life by many. However the role of informal support was not uniform and was subject to e.g. personalities, family circumstances and severity of symptoms. Community organisations were not identified as sources of support and not everyone received support from family and friends. Carers appeared to be more aware of issues of stigma, privacy and self reliance and there was some evidence of people avoiding services for fear of gossip.

4.2.6 The actual physical landscape of rural areas contributed, along with

social networks, to a feeling of both ‘community support and community surveillance’. The physical landscape and dispersed and ageing population also acted as a barrier to access to services due to transport issues, lack of specialist services and lack of choice of services. There was also evidence that people’s experiences were affected by the stage of the disease, length of time in the area and their age. Older people felt a distinct lessening of the traditional community ties in rural areas and seemed more willing to accept the burden of caring. Whilst people in very remote areas faced particular difficulties, those living in market towns had the most negative perceptions of services, seeing themselves as lacking the advantages of both urban centres and the ‘rural idyll’ of more remote areas.

4.3 Service Outcomes 4.3.1 The Research Advisory Group suggested that we should explore the

impact on dementia services of the increasing emphasis on an outcomes approach to service delivery. In Scotland a Community Care Outcomes Framework and Local Improvement Targets are helping to move health and social care partnerships towards this approach. Taking an outcomes approach raises very practical challenges for local authorities, particularly where care is delivered through a mixed economy of providers. (Glendinning 2008, JIT 2009).

4.3.2 Bamford and Bruce (2000) review a wide range of literature about

views on service quality and outcomes and compare them to measures commonly used to assess quality of life of people with dementia. At that time, few studies had explored the views of people with dementia on this topic. Those studies involving users emphasised that desired outcomes would relate to an individual’s needs, circumstances and personality. Key themes which emerged included maximising choice and control, respecting dignity, maintaining social contact and the process of service delivery. They identified a number of desired outcomes falling within two basic themes: quality of life and service processes. Having choice about social contact and access to ordinary activities was important as was maintaining a sense of control and their personal identity. Personal, financial and environmental security were also important

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along with personal hygiene and comfort. Service process issues included: having a say, feeling valued and being treated as an individual. At the time, they concluded that their findings were consistent with a number of quality of life measures and tools such as Dementia Care Mapping, but were not well reflected in typical service evaluation measures. A number of these issues were also important to users and carers in rural and remote areas of Scotland (see above para 4.2.2/4.2.3) (Innes et al 2006).

4.3.3 Frances and Netten (2004) sought the views of older people and

their carers on a number of features identified from the literature as important in delivering a quality service: reliability, continuity, flexibility, communication, staff attitudes and skills and knowledge. The findings from the literature were largely confirmed in their small study, although staff attitudes and motivations for caring were most important to service users.

4.3.4 Glendinning et al (2008) reviewed the wider literature on social

care outcomes for older people and identified three main clusters of desired outcomes: changes in physical, mental or emotional wellbeing; maintenance of quality of life and the process of seeking and receiving services. They found little evidence on the outcomes valued by particular groups of older people such as people with dementia.

4.3.5 Orkney Islands Council is one of several Scottish local authorities

which have been piloting ‘Talking Points’, an outcomes based approach to service planning and delivery which aims to capture information about users and carers aspirations and goals during routine service processes (JIT 2009). The approach is based upon research carried out at York and Glasgow Universities and builds on what is known about what outcomes users and carers want from service provision. An interim evaluation of pilot sites for this approach suggested that it had been welcomed enthusiastically and the perceptions of providers were that it had promoted person-centred practice and engagement with users and carers. However a number of challenges in mainstreaming the approach into assessment and performance management procedures were identified (Stewart 2008).

4.3.6 Glendinning et al (2008) found that progress in developing

outcomes driven services in England was relatively recent and rather fragmented. Progress was greater in relation to intermediate care and re-ablement services than in refocusing home care services. Several of the outcomes desired by older people were not being addressed by services in a number of areas. There were varying interpretations of ‘outcomes’ and a risk that the term was becoming associated with only a limited range of the outcomes desired by older people. The risk that groups of older people such as those with dementia could be marginalised was identified.

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4.4 Support for Rural Carers 4.4.1 It has long been recognised that informal carers play a vital role in

supporting older people, including people with dementia, to be cared for at home (Wenger et al 2002, Carers UK 2003, Schneider et al 2002). Various policy developments have sought to recognise their contribution to community care objectives and ensure they receive support to continue caring for as long as they wish to do so. Whilst a variety of interventions to support carers are now available, the evidence suggests that carers still face substantial barriers in accessing services that are appropriate to their needs (Innes et al 2006, Glueckauf et al 2005). Frequently help is not sought until matters reach crisis point which may have significant personal and financial consquences for carers, people with dementia and service providers (Wenger et al 2002, Glueckauf et al 2005).

4.4.2 A study by Wenger, Scott and Sneddon (2002) of carers in rural

parts of Wales confirmed that carers of people with dementia are mostly women. The main problems identified were stress related and included managing the physical and behavioural symptoms of the disease and lack of sleep. Carers were supported by families and receipt of formal service delivery was low. There were implications for both physical and mental health due to the practical burdens of caring and relationship changes with their loved ones, family, friends and neighbours. Most carers received the services they felt they needed and were satisfied with them but some were either not receiving services or had refused them or had complaints. Contrary to findings in the literature that most carers carried the burden alone, carers in this study reported they were well supported by family and friends. However this was not considered a rural effect as carers in Liverpool in the same study also felt supported. Carers most typically turned to professionals for help when some sort of health problem forced a crisis. The study also raised questions about the need for more and early diagnosis of the disease to allow carers to get information and help early in their caring career. The study concluded that the implications of caring and the experiences of services of rural carers were typical of those described elsewhere in the literature in most respects. It was suggested that community care dementia specialists could provide valuable support to carers in terms of education and training to help them cope.

4.4.3 Carers in rural areas therefore appear to face the same difficulties

as those elsewhere but in addition may experience social isolation and poorer services (Carers UK 2003, Baldwin and Mackenzie 2008). A study by Tommis et al (2007) found that there were some differences in the experiences of rural and urban carers that could be attributed to location but gender was also an issue. The lack of availability of short term respite services in rural areas was linked to poorer mental health, particularly for male carers. They did not find significant differences in levels of service which were generally

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low, the issue was the type of service on offer. In the study by Innes et al (2006) carers identified many of the same gaps in services as users, including transport, respite care but also support services including access to a carers group. The inappropriateness or inaccessibility of services for their family members was also given as a reason for non use of services in this study. Carers, like people with dementia, saw both positive and negative aspects to their rural location.

4.4.4 A number of international studies have found similar issues

regarding service gaps and non-use of services by rural carers. Morgan et al (2002) found evidence of several barriers related to the acceptability and accessibility of services which prevented carers from using support services including lack of awareness of what was available, beliefs and attitudes including fear of being a burden, a desire to protect the family from the stigma and gossip associated with dementia, distance, timing and costs. O’Reilly and Strong (1997) also found that rural carers are less well served than those in metropolitan areas of Australia. Carers perceived themselves as in need of more help and identified flexible respite, information and greater access to services as important. Rural life also had both positive and negative aspects as far as caring for a person with dementia was concerned. Whilst carers could more easily access informal support from the community, they also experienced interference. Family members tended to be wider spread and not so able to offer support. A more recent study of rural carers’ experiences in Australia confirms continued difficulties in accessing services but largely positive views of services received. The research confirmed that accessing information at the right time was critical and many experienced difficulties (Robinson 2009).

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5. RESPONSES OF SERVICE PROVIDERS 5.1 Overview 5.1.1 Hudson (2009) in an international review of literature on rural and

remote area service challenges and responses, sets out a typology of approaches taken by health and social care providers. He identifies six types of approach: reducing the impact of distance through the use of technology; workforce strategies focused on recruitment and retention, new roles and team working; supporting independence strategies including extra care housing and personal budgets; area based strategies that build social capital and take a community development approach; rural proofing of national, regional and local policies; partnership strategies.

5.1.2 Asthana and Halliday (2004) in a review of innovation in rural

health services in England also identified six types of approach: improving co-ordination and avoiding duplication in service delivery, flexibility in roles and responsibilities of staff, the provision of mobile services, outreach and multi-purpose facilities, provision of appropriate and affordable transport, improving information for professionals; increasing gateways and improving signposting to services for users. Smith and Homer (2009) in a review of good practice and innovative responses to recent policy developments in the care of older people in Scotland identified approaches involving: partnership working, co-location/integration of community services, workforce strategies and strategies to build community resilience.

5.1.4 Smith and Homer’s review found that many changes were

opportunistic rather than planned or strategic. A wide range of examples of service innovations consistent were reported including some relating to dementia care e.g. the appointment of a Dementia Care Manager in Shetland and the development of specialist dementia care units within larger residential facilities in the Western Isles. However providers also reported continuing challenges in providing e.g. low level preventative services, overnight care, emergency response systems and small scale residential facilities. The process of achieving change required additional resources for staff and community engagement (Smith and Homer 2009).

5.1.5 Several authors have identified that, although rural and remote

service providers share many similar challenges, it cannot be assumed that what works in one area will work in another. There is no guarantee of transferability of service innovations and the local context must always be considered (Asthana and Halliday 2004, Pugh et al 2007, Hudson 2009). Smith and Homer (2009) set out some of the reasons why this should be the case, including differences in population structure and geography and give examples of different types of rural and island communities identified by service providers.

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5.2 Dementia Care Service Innovations 5.2.1 Like Innes et al (2006) this review uncovered few evaluations of

dementia services in rural and remote areas in the UK. Descriptive studies have been published of integrated residential and community services (Fisher and Moriarty 2005), of telecare initiatives (Calder 2006) of housing for older people (Bevan et al 2006) and of good practice examples (Heath 2005). Evaluative studies have been published of telecare initiatives (Bowes and McColgan 2009) and day care services in Ireland (Gibson and Whittington 1995). Studies of community dementia services in urban areas focus primarily on home care (Frances and Netten 2004, Venables et al 2006, Rothera et al 2008, Riordan et al 1998 Cobban et al 2004), respite care (Arksey et al 2005 Jeon et al 2004), day care (Walker et al 2001) and services for carers (Victor et al 2009, Glueckhauf et al 2005).

5.2.2 The study by Innes et al (2006) of service providers in rural and

remote areas of Scotland found that innovations 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. Baldwin and Mackenzie (2008) in their review of literature on rural dementia care services found that service responses included: the use of technology to support service delivery and professional education; the development of multi-purpose facilities offering integrated health and social care; specialist care managers and advisers and joint working including sharing of resources.

5.2.3 From interviews with 30 managers and staff involved in dementia

services in rural England, MacDonald and Heath (2006) noted that partnership working was felt to be particularly valuable in rural areas enabling sharing of skills and resources. Dementia ‘champions’ willing to ‘go the extra mile’ for people with dementia had been found to make a difference to services (MacDonald and Heath 2006 p9). Approaches to overcoming distance problems included very localised service delivery and peripatetic outreach services. Community development approaches based on identifying local people who could act as signposts and stimulate community responses had been useful.

5.2.4 Day care services have been developed using peripatetic and

mobile models, for example the use of a bus to collect people and drop them off at pubs and other locations to have lunch and do activities of their choice (Craig and Manthorpe 2000). The use of village halls and other community buildings by voluntary organisations commissioned to provide day care has been evaluated in Northern Ireland (Gibson and Whittington 1995). Such services were found to take longer to establish and volunteers were vital to

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their success. Storage difficulties and problems encountered by peripatetic staff meant that activities were not always available. Services were valued by people with dementia and their carers but could have benefited from more individualised provision of activities. The evaluation concluded that urban models of care do not necessarily translate to rural areas and that careful analysis of the very particular demographic, geographic and community context of rural areas is necessary for successful service innovation.

5.2.5 Smith and Homer (2009) note that ‘hub’ models can provide the

critical mass necessary for sustainable services in rural areas. Thomson Court on the Isle of Bute provides 24 hour care, respite care, day care 7 days a week, a laundry and meals service, carers support and advice and information in a redesigned residential home. Staff working across the different types of service provides both flexibility and continuity of care. Community outreach to raise awareness of dementia service is an important part of the philosophy, as is providing activities which reflect the rural background of many service users. Staff are able to support people to carry on activities in the community as an alternative to day care (Fisher and Moriarty 2005).

5.2.6 The most significant debate in the wider dementia services

literature regards the effectiveness of specialist as opposed to generic services in meeting the needs of people with dementia and their carers. In a comparative study carried out in London, of the effects of receiving additional practical and emotional support, it was found that a specialised and well targeted home care dementia support service enabled people with dementia to remain at home for longer (Riordan and Bennett 1998). Key elements of the additional service included comprehensive assessment, flexibility and continuity of care.

5.2.7 A qualitative study of a specialist multi-disciplinary support service

for people with dementia in an urban area of Nottingham found that good outcomes could be achieved for users and carers. Features of the specialist service included a rehabilitative approach focused not on task performance but on normalisation, education and training of staff. However service targets relating to hospital admission and discharge were not sufficiently affected by the service, which was ‘adaptive’ rather than ‘restorative’ in its approach to rehabilitation (Gladman et al 2007). Further identification of the features of this service which were important in delivering improved outcomes for users and carers are described in Rother et al 2008.

5.2.8 However in a study of 65 generic home care services and 10

specialist services in the North West of England, Venables et al (2006) found significant differences on only two out of 10 quality standards assessed. On one of these – the flexibility standard- generic services scored more highly, possibly because they tended to be larger organisations. However specialist services scored more highly on the user-centred practice standard. In addition, the

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authors suggest that because specialist services tend to be smaller and more of their clients have dementia they possibly provided greater continuity and familiarity of care. Areas of improvement were identified for all services.

5.2.9 A recent systematic review of UK studies evaluating the outcomes

of interventions targeted directly at carers uncovered a wide variety of types of interventions including those designed to:

• Improve access to services • Improve carers health • Provide emotional and social support • Provide education and training in matters related to dementia • Support employment opportunities • Provide breaks from caring

5.2.10Evidence of outcomes from quantitative studies was generally weak but qualitative studies provided evidence of perceived benefits and some explanatory information about how different interventions worked. Detailed information about outcomes is provided for each type of intervention and a number of general themes emerged for organisations about how to deliver interventions to carers. These included: the importance of the approach and qualities of staff; offering flexibility and tailoring of services to individual need; the importance of recognising the role of carers; paying attention to structural issues such as timing, content, characteristics of carers and format of delivery. In a review of over 100 studies there is barely a mention of issues specific to rural carers.

5.2.11Carers participating in qualitative studies about respite care

perceived a wide variety of benefits and were able to identify a range of success factors for services including: thorough assessment and on-going review, individualisation – appropriate to needs and circumstances of carers, appropriateness for the person with dementia, ability to maintain and improve the wellbeing of the person with dementia, affordability and provided by trained and caring staff (Arksey et al 2005).

5.2.12Carers UK have identified a number of good practice responses to

the needs of rural carers: providing a wider variety of respite opportunities including: home sitting and fostering services; using GP surgeries, local radio and TV to raise awareness of services; using taxi firms and shared transport schemes to take carers to appointments etc; offering medical care at day care facilities (Carers UK 2003).

5.2.13Many interventions for carers are focused on reducing social

isolation and combining social opportunities with information and education sessions. The Alzheimer Café concept has grown up in recent years as a successful example of such provision (Halley et al 2005, Capus 2005, Baldwin and Mackenzie 2008). Projects in Scotland are exploring the use of technology to offer similar types

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of interventions to rural carers, such as the telephone helpline and support network run by the Highland Carers Project (Carers UK 2003). Research undertaken in America has identified factors which may affect the take up of tele-health/care initiatives by rural carers as well as the skill set required by rural carers which educational interventions need to address (Glueckauf et al (2005). Trust emerged as a key issue in this study - recommendations from a trusted and known professional or community leader about telehealth services were one of the factors most likely to encourage use of a service. GP surgeries and local community centres were seen as good ways to promote the availability of dementia services. Interventions should address issues such as: effective coping techniques, behavioural management skills, financial and legal planning issues.

5.3 Assistive Technology 5.3.1 Assistive Technology is a broad term generally covering a wide

range of telecare and telehealth products and services designed to enable greater independence for older people and people with disabilities (Beech and Roberts 2008). Various typologies of the uses of new technology in health and social care settings are possible (Hudson 2009, JIT (2008), Beech and Roberts 2008). The Scottish Government has invested 16 million pounds in a 4 year programme to promote the use of telecare initiatives to enable people to live longer in their own homes. A national strategy provides a framework against which investment decisions are made and the Joint Improvement Team supports telecare partnerships in a variety of ways. Their 2008 report summarises the development of telecare in Scotland and promotes the adoption of what they describe as ‘second generation’ and ‘third generation’ uses of technology within the mainstream of service provision. However in a recent review of service developments in rural and remote areas Smith and Homer (2009) found that service providers were facing difficulties in arrangements for managing response arrangements, including the handling of calls. Whilst some authorities had made progress with ‘second generation’ technology the general view appeared to be that telecare would have to develop incrementally.

5.3.2 There is a growing research literature examining the benefits, costs

and challenges of telecare initiatives in dementia care. Whilst there is evidence that telecare can enable people with dementia to live longer in their own homes, there are also concerns that cost reduction drivers may over ride consideration of ethics, inclusion and personalisation (Beech and Roberts 2008). Tinker et al (2004) have established a number of practical issues associated with introducing new technology into existing homes including the variability and complexity of individual needs and the limitations imposed by the design and construction of many buildings (Tinker et al 2004 cited in Hudson 2009). Other issues raised include the willingness of practitioners to use and adapt to technology and the impact that technology may have on users and carers priorities and

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values for their care (Hudson 2009). Beech and Roberts (2008) suggest that research includes mostly small scale evaluations of individual initiatives, action research projects involving users and carers in design and theoretical reflections on ethical issues and appropriate care models. No literature examining issues specifically in rural areas was found.

5.3.3 One of the main lessons emerging from evaluations of telecare is that an appropriate philosophy and model of care must underpin investment in technology (Askham 2006, Calder 2006, Wey 2006). A considerable factor in the success of West Lothian’s introduction of telecare into people’s own homes and purpose built ‘homes for life’, has been the integration of technology with a model of care based on choice, independence and capacity building (Bowes and McColgan 2006). In South Lanarkshire, an inter-disciplinary team was created to progress the introduction of technology to enable people with dementia to live at home for longer. Critical success factors identified included that technology was introduced after a person centred needs assessment and with close monitoring and review of care packages, partly enabled by information gained from the technology (Calder 2006). Wey has argued that dementia is a process of adaptation and that assistive technology should be regarded as part of the ‘scaffolding’ that is available to support people to retain as much capacity as possible (Wey 2006). A person centred approach to the use of assistive technology should include the consideration of alternatives – e.g. finding a walking companion rather than installing sensors to prevent wandering – and tailoring technology solutions to an individual’s particular capacities and environment rather than assuming what works for one person will work for another (Baldwin 2006).

5.3.4 Various benefits of the use of assistive technology have been reported by staff, people with dementia and their carers in a number of studies. These include: less use of hospital and residential facilities, reduction in consequences of risks such as falls and wandering, more time for contact between staff and users, promoting independence and choice for service users, improving feelings of safety and security, providing assurance for relatives, enabling people to remain at home for longer (Beech and Roberts 2008, Askham 2006, Calder 2006, Bowes and McColgan 2006). A wide range of individual examples of the benefits of technology in England are available in a Department of Health report on telecare and dementia (Clark 2009). Evaluation of the Scottish telecare investment programme shows that local partnerships have made a promising start against the various objectives of the programme (Beale et al 2009).

5.3.5 A number of ethical and practical challenges face service providers wishing to introduce assistive technology. At its most basic, the technology itself has to work and be capable of being used by people with dementia and their carers. Simple and familiar products that work efficiently and effectively are likely to be most successful,

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although the success of devices also depends on people’s capacity to learn new tasks and the availability of good maintenance and support packages (Cash 2006, Cahill et al 2007). Whilst there are challenges in involving people with dementia in the design process and success may be more likely later in the design process, this may be an important means of ensuring values of inclusiveness and accessibility are built into technology ( Orpwood et al 2007 and Baldwin 2006). Other issues raised by service providers have included the importance of multi-disciplinary teams being involved in the introduction of technology, resource implications of sustaining large scale technology programmes and the danger that technology actually lessens independence and choice by becoming a new means of surveillance of service users (Calder 2006)

5.4 Extra Care Housing 5.4.1 Housing with extra care services is increasingly seen as an option

for older people who cannot continue living in their own home or cannot return to their own home after a spell in hospital. Most older people when asked say they wish to remain in their own homes as long as they are able to do so and living at home is felt to be a key factor in maintaining the sense of autonomy that people with dementia say is important to them (Bamford and Bruce 2000, Bevan et al 2006). It is of interest to service providers as a means of shifting the balance of care away from institutional formats and of potentially decreasing costs of long term care. There are a great variety of types of ‘extra care housing’ and a growing private sector market (Croucher et al 2006, Dutton 2009). Features of extra care housing most commonly identified by professionals include: flexible care, self contained dwellings and a ‘homely’ environment (Dutton 2009).

5.4.2 Some people question whether extra care housing is suitable for

people with dementia, at least for those with more challenging and advanced symptoms. Three main models appear to be evolving: extra care/very sheltered housing, independent living models, multi-purpose resource centres. These models may house older people with dementia alongside other tenants, just people with dementia or have a separate section within a larger development for people with dementia. There are a growing number of examples of more individual provision for people with dementia, some of which may be suitable for rural areas (Bevan et al 2006). In Newcastle, the Dementia Care Partnership, started by families and carers dissatisfied with what was on offer for their relatives, have established a number of small independent living houses using ordinary homes in the community. Three to five people with dementia live in the homes and are supported with a person-centred care service which seeks to achieve ‘normalisation’.

5.4.3 There are considerable gaps in the research evidence about the

effectiveness and costs of extra care housing, especially for people

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with dementia (Croucher et al 2006, Dutton 2009). Much of the research is American evaluating what is known there as ‘apartment style assisted living’. However what evidence there is suggests that extra care housing may be an option for people with dementia with mild to moderate symptoms and may be capable of providing a ‘home for life’ for some people but not all, especially those with more challenging symptoms. People with dementia are able to have a reasonable quality of life in extra care housing, however some may experience social isolation, loneliness and discrimination. Features of extra care housing which contribute to the best outcomes for people with dementia include person-centred care, staff with specialist skills and knowledge about dementia and joint working with care partners. There are implications for providers of having people with dementia in extra care housing in terms of resources and managing behaviours. Service providers need to be flexible, innovative, specialists in dementia care and capable of managing challenging behaviours and symptoms such as aggression, wandering and incontinence. When a person enters extra care housing is important in terms of the likely success of the placement and it is probably not appropriate for people already in the latter stages of dementia (Dutton 2009).

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6. PRACTITIONERS VIEWS ON FINDINGS

6.1 Seminars 6.1.1 Seminar participants in Orkney and Borders received presentations

on the ELA project, the rural policy context for public services and the initial findings from the literature review. Participants were then asked to discuss what they had gained from the seminar and how the findings from the literature should feed into the rest of the project.

6.1.2 Participants found it useful to get an overview of the policy context

for their work and to have their own experiences of the difficulties of delivering services in rural areas confirmed by the literature. Many of the themes from the literature were felt to be familiar and there was disappointment at the lack of recent evaluations of innovative services in rural and remote areas. Various possible reasons for this were discussed, including that there was a research to publication time lag, that it was taking time for local authorities to respond to research evidence and the national policy agenda and that it was particularly difficult to research complex social care services in rural and remote areas.

6.1.3 However it was felt useful to have an authoritative overview of the

issues to feed into strategy discussions at a local level and there was evidence that this was already happening. The literature review was also seen as an opportunity to identify a checklist of what has and has not worked in the past to avoid wasting time going over old ground.

6.1.4 In Orkney there was a feeling that the literature demonstrated that

service providers and policy makers were ‘tinkering’ and that a more radical agenda would be required to really bring about change. The importance of continuing to update the findings was identified and participants were particularly keen to learn more about experiences of:

• Joined up transport • Personalisation • Specialist as opposed generalist services • Dementia Advisers • Capturing feedback from carers based on their observation and interaction with people with dementia.

6.1.5 The opportunity to learn about what the authorities (and others

across Scotland) were doing and share experiences was as valuable to participants as learning from the literature. There was also an enthusiasm to share the learning from the seminar with local partners and feed the findings into local good practice networks.

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6.1.6 In terms of future directions for the project, there was a great deal of enthusiasm to test communication tools such as ‘Talking Mats’ in the placement on community engagement. It was also suggested that improvement plans needed to focus on good practice, not just rearranging who should deliver services.

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APPENDIX ONE: BIBLIOGRAPHY Allan K (2001) Communication and Consultation: Exploring ways for staff to involve people with dementia in developing services Bristol, Policy Press & Joseph Rowntree Foundation Askham E (2006) Technology in dementia care – does it bring genuine benefits? Pp45-53 in Woolham J (ed) (2006) Assistive Technology in Dementia Care. London. Hawker Publications. 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), 457–465 Arksey H, Jackson K, Croucher K, Weatherly H, Golder S, Hare P, Newbronner E, Baldwin S (2005) Review of Respite Services and Short-Term Breaks for Carers for People with Dementia. A Report for the National Co-Ordinating Centre for NHS Delivery and Organisation. York. University of York Social Policy Unit Aveyard H (2007) Doing a Literature Review in Health and Social Care. Maidenhead, McGraw-Hill Education Audit Commission (2000) Forget Me Not: Mental Health Services for Older People Abingdon. Audit Commission Baldwin C (2006) Reflections of ethics, dementia and technology pp54-66 in Woolham, J (ed) (2006) Assistive Technology in Dementia Care. London. Hawker Publications. Baldwin C and Mackenzie J (2008) Service needs and delivery following dementia diagnosis: evidence based review. London. Commission for Rural Communities. 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 pp543-570. Bartlett R and O’Connor D (2007) Personhood to citizenship:Broadening the lens for dementia practice and research. Journal of Aging Studies Vol 21 pp107-118 Beale S, Sanderson D and Kruger J (2009) Evaluation of the Telecare Development Programme: Executive Summary Joint Improvement Team http://www.jitscotland.org.uk/action-areas/telecare-in-scotland/telecare-publications/ Beech R and Roberts D (2008) Assistive technology and older people London. Social Care Institute for Excellence Bevan M, Croucher K, Rhodes D, Fletcher P, Riseborough M (2006) The housing and support needs of older people in rural areas. Commission for Rural Communities/Housing Corporation 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 pp161-176

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Bowes A and McColgan G (2006) Smart technology and community care for older people: innovation in West Lothian, Scotland. Edinburgh, Age Concern Scotland Bowes A and McColgan G (2009) Implementing telecare for people with dementia: Supporting aging in place in West Lothian, Scotland Journal of Care Services Management Vol 3 (3) pp227-243 Cahill S, Begley E, Faulkner JP, Hagen I (2007) ‘”It gives me a sense of independence” :Findings from Ireland on the use and usefulness of assistive technology for people with dementia’ Technology and Disability Vol 19 pp 133-142 Calder C (2006) Person centred approaches to using technology in practice settings: the South Lanarkshire Dementia Technology Initiative pp28-33 in Woolham, J (ed) Assistive Technology in Dementia Care London. Hawker Publications. Capus J (2005) The Kingston Dementia Café: The benefits of establishing an Alzheimer café for carers and people with dementia. Dementia Vol 4 p588 Cantley C, Woodhouse J and Smith M (2005)’ Listen To Us: Involving People with Dementia in Planning and Developing Services’ Newcastle, Dementia North Carers UK ( 2003) Policy briefing- Rural Carers http://www.carersscotland.org/Policyandpractice/Policybriefings/PolicybriefingsUKwide Care Commission and Mental Welfare Commission For Scotland (2009) Remember I’m Still Me: joint report on the quality of care for people with dementia living in care homes in Scotland. Edinburgh, Care Commission and Mental Welfare Commission for Scotland Cash M (2006) Exploring the potential of existing low-key technological devices to support people with dementia to live at home pp9-27 in Woolham, J (ed) Assistive Technology in Dementia Care London. Hawker Publications. Clark M (2009) Telecare outcomes and mainstreaming: summary of responses by social care authorities to CSCI performance assessment 2008 Learning and Improvement Network Department of Health, www.networks.csip.org.uk/telecare Cobban, N (2004) Improving Domiciliary Care for People with Dementia and their Carers (pp50-66) cited in Innes, A et al (2004) Dementia and Social Inclusion, London, Jessica Kingsley Publications. Craig G and Manthorpe J (2000) Freshfields Rural Social Care: Research, Policy and Practice Agendas. Joseph Rowntree Foundation York York Publishing Services. Croucher K, Hicks L, Jackson K (2006) Housing with Care for Later Life: A Literature Review. York. Joseph Rowntree Foundation.

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Department of Health (2009) Living Well With Dementia: A National Dementia Strategy. Leeds. Department of Health Dutton, R (2009) “Extra Care” Housing and People with Dementia: A A Scoping Review of the Literature. Beaconsfield. Housing and Dementia Research Consortium Farmer J, Philip L, King G, Farrington J, MacLeod M (2010) Territorial Tensions: misaligned management and community perspectives on health services for older people in remote rural areas Health and Place Vol 16 (2) pp275-283 Fisher E and Moriarty J (2005) Thomson Court: Integrating long-term care and community care in a rural community. Dementia Vol 4 p595-597 Frances J and Netten A (2004) Raising the Quality of Home Care: A Study of Users Views. Social Policy and Administration Vol 38 (3) pp 290-305 Gibson F and Whittington D (1995) Day Care in Rural Areas: Social Research Findings 72. York. Joseph Rowntree Foundation Gladman JRF, Jones RG, Radford K Walker E, Rothera I (2007) Person centred services are feasible but can they be sustained? Age and Ageing Vol 36 pp171-176 Glendinning C, Clarke S, Hare P, Maddison J and Newbronner L (2008) Progress and problems in developing outcomes-focused social care services for older people in England, Health and Social Care in the Community, 16, 1, 54-63

Glueckauf RL, Stine C, Bourgeois M, Pomidor A, and Rom P, Young ME, Massey A and Ashley P. (2005) ‘Alzheimer’s Rural Care Healthline: Linking Rural Caregivers to Cognitive–Behavioral Intervention for Depression’. Rehabilitation Psychology Vol50 (4) pp346-354

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Hart C (1998) Doing a Literature Review: Releasing the Social Science Imagination, London. Sage. Heath B (2005) Alone With Dementia in Rural Areas: Service Mapping and Case Studies Dementia Focus http://www.uea.ac.uk/swp/research/dementia/service%20mapping%20with%20case%20studies%20%2015%2009%2005.pdf Hudson R (2009) Supporting People in Remote and Rural Areas: A Framework for Analysis. Edinburgh. Joint Improvement Team www.jitscotland.org.uk/action-areas/rural-and-remote/publications. Innes A et al ( 2002) Project Report: Service provision for people with dementia and their carers in remote and rural areas of Scotland ( Phase 1) Dementia Services Development Centre and the Dept of Nursing and Midwifery, University of Stirling

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Innes A (2002) The Social And Political Context of Formal Dementia Care Provision. Ageing and Society Vol 22 pp483-499 Innes A et al ( 2006) Service provision for people with dementia in rural Scotland- Difficulties and Innovations. Dementia, Sage Publications Vol 5(2) 249-270 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), 297–306 Joint Improvement Team (2008), Telecare in Scotland: Benchmarking the Present, Embracing the Future. http://www.jitscotland.org.uk/action-areas/themes/telecare.html Joint Improvement Team (2009a) Key Messages Talking Points: Personal Outcomes Approach. Edinburgh. Scottish Government. http://www.jitscotland.org.uk/action-areas/talking-points-user-and-carer-involvement/. Joint Improvement Team (undated) Philosophy and Principles Underpinning A Personal Outcomes Approach . Edinburgh. Scottish Government. http://www.jitscotland.org.uk/action-areas/talking-points-user-and-carer-involvement/. Kitwood T (1997) The experience of dementia Aging and Mental Health Vol 1 (1) pp 13-22. Lee H, Cameron M. (2004) Respite care for people with dementia and their carers. The Cochrane Database of Systematic Reviews, Issue 1. Art. No.: CD004396.pub2. DOI: 10.1002/14651858.CD004396.pub2.

MacDonald A and Heath B (2006) Alone with Dementia in Rural Areas: Report for Department of Health, Executive Summary. Dementia Focus http://www.uea.ac.uk/swp/research/dementia/executive%20summary%203%20april%202006.pdf MacDonald C (2004) Older People and Community Care In Scotland: A Review of Recent Research. Edinburgh. Scottish Executive. Manthorpe J and Stevens M (2008) The Personalisation of Adult Social Care in Rural Areas. Cheltenham. Commission for Rural Communities. www.ruralcommunities.gov.uk/publications/crc78thepersonalisationofadultsocialcareinruralareas Morgan D G et al (2002) Rural Families Caring for a Relative with Dementia: Barriers to Formal Services. Social Science and Medicine Vol 55 pp1129-1142 Murphy J, Gray C and Cox S (2007) Using ‘Talking Mats’ to help people with dementia to communicate. York, Joseph Rowntree Foundation National Audit Office (2007) Improving Services for People with Dementia London. National Audit Office. National Dementia Strategy Objective 6 – improved community personal support: Think Tank Report. (2009) London. Department of Health and

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Association of Directors of Social Services. www.changeagentteam.org.uk/index.cfm?pid=34&catalogueContentID=4125 OECD (2006) The New Rural Paradigm: Policies and Governance OECD Publishing O’Reilly MT and Strong J (1997) Caring for Someone with Dementia in a Rural Town Part 2: Services. Australian Journal on Ageing 16(4) pp194-197 Orpwood R, Sixsmith A, Torrington J, Chadd, J Gibson G, Chalfont G (2007) Designing technology to support quality of life of people with dementia. Technology and Disability Vol 19 pp103-112 Pugh et al (2007) Research Briefing 22: Obstacles to Using and Providing Social Care. London. Social Care Institute for Excellence 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): 137-143 Robinson A et al (2009) Information Pathways into Dementia Care Services Dementia Vol 8 (1) 17-37 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 pp65-72 Schneider J et al (2002) Formal and Informal Care for People with Dementia: Factors Associated with Service Receipt. Ageing and Mental Health 6(3) pp255-265 Scottish Intercollegiate Guidelines Network (2006) Management of Patients with Dementia: A national clinical guideline Edinburgh. SIGN Scottish Executive Health Department (2004) Mental Health Framework NHS HDL 44 http://www.sehd.scot.nhs.uk/mels/HDL2004_44.pdf Scottish Executive (2005) Better Outcomes for Older People: Framework for Joint Services Summary Edinburgh. Scottish Executive Scottish Government (2007) Better Health Better Care: Action Plan Edinburgh. Scottish Government Scottish Government (2008) Delivering for Remote and Rural Health Care: final report of the remote and rural workstream Edinburgh. Scottish Government Smith, M and Homer, A (2009) A review of service development and innovation in the delivery of joint health and social care and support services in rural areas. Edinburgh, Joint Improvement Team www.jitscotland.org.uk/action-areas/rural-and-remote/publications Stewart A (2008) An Evaluation of the User Defined Service Evaluation Tool (UDSET) in the Pilot Sites Edinburgh. Joint Improvement Team/Glasgow School of Social Work

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Tinker, A et al (2004), Introducing Assistive Technology into the Existing Homes of Older People, King’s College London and University of Reading as cited in Hudson (2009) 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): 743-750 Venables, D., Reilly, S., Challis, D., Hughes, J. and Abendstern, M.(2006)'Standards of care in home care services:A comparison of generic and specialist services for older people with dementia', Aging & Mental Health,10:2,187 — 194 Victor E (2009) A Systematic Review of Interventions for Carers in the UK: Outcomes and Explanatory Evidence. London, Princess Royal Trust For Carers Walker G and Dewar B, with Dewing J and Pritchard G (2001) An Evaluation of Day Care Services for People with Dementia from the Perspective of Major Stakeholders. Edinburgh Queen Margaret University College www.qmu.ac.uk/copa/research/completed/eval_day_care_dementia.htm 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): 30-38 Wey S (2006) ‘Working in the Zone’ – a social-ecological framework for dementia rehabilitation pp85-103 in Woolham, J (ed) Assistive Technology in Dementia Care London. Hawker Publications Wilkinson H (ed) (2002) The Perspectives of People with Dementia: Research Methods and Motivations. London, Jessica Kingsley Publications

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APPENDIX TWO: KEY WORDS

• Dementia; Alzheimer’s; senile dementia; confused elderly • Care at home; social care • Home care; day care; respite care • Telecare; assistive technology • Housing; design; extra care housing • Behaviour; wandering; anxiety; aggression • Communication; information; training • Rural; remote; island • Independence; user satisfaction; user preferences; inclusion, rehabilitation, re-enablement

• Carers; informal carers; support needs; relationships • Good practice; standards; quality indicators

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APPENDIX THREE: SEARCH SOURCES OVID Medline HMIC Social Work Abstracts Social Policy and Practice Ageline Cochrane Library PubMed Applied Social Sciences Index International Bibliography of the Social Sciences SocIndex Google Scholar Theses Database CSA Illumina Emerald Ingenta Connect Science Direct WEBSITES Social Care Institute for Excellence Department of Health Scottish Government Joint Improvement Team Dementia Services Centre Stirling Dementia Services Centre Bradford Dementia North Dementia Focus Joseph Rowntree Foundation Alzheimer Scotland Alzheimer’s Society