Department of Health Policy Research Programme Project HEALTHBRIDGE The National Evaluation of Peer Support Networks and Dementia Advisers in implementation of the National Dementia Strategy for England [Ref: 025/0058] Report Authors and Evaluation Team *Clarke, C.L.1, Keyes, S.E.1, *Wilkinson, H.1, Alexjuk, J.1, Wilcockson, J.2, *Robinson, L.3, Reynolds, J.4, *McClelland, S.5, Hodgson, P.4, *Corner, L.3 and *Cattan, M.4 *denotes grant holder. 1. School of Health in Social Science, University of Edinburgh 2. Independent 3. Institute of Ageing and Health, Newcastle University 4. Faculty of Health and Life Sciences, Northumbria University 5. Health Economics and Policy Research Unit, Glamorgan University March 2013 1 Acknowledgements We are very grateful to all who engaged with this evaluation, whether through data collection, acting as translators, facilitating our work, advising the team or engaging in discussions. We especially thank people with dementia and carers who shared their experiences with us through in-depth interviews and/or completing well-being questionnaires, as well as staff, volunteers and stakeholders from the case study sites who were interviewed. We also thank all demonstration site staff who liaised with the evaluation team and enabled data collection, and those who enabled data collection in the non- demonstration site. All were critical to this work. The support of the Implementation Team of the National Dementia Strategy has been very much appreciated. C. Hutton, Dr E. Gobriel, A. Fletcher, Dr K. Laidlaw and PSSRU in Kent also made very valued contributions through administrative support, data collection, supporting analysis or methodological discussions. This report is independent research commissioned and funded by the Department of Health Policy Research Programme (Healthbridge: The National Evaluation of Peer Support Networks and Dementia Advisers. Ref: 025/0058). The views expressed in this publication are those of the authors and not necessarily those of the Department of Health. Two alternative formats of this report are available: a brief report written primarily for service commissioners and providers, and a lay summary. Contact details: Professor Charlotte Clarke School of Health in Social Science, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG [email protected] 2 Contents Executive summary……………………………………………………………………………………………………………………… 5 Healthbridge: Background and literature review…………………………………………………………………………12 Section One: Policy background and the National Dementia Strategy……………………………………..13 Section Two: Theoretical perspectives…………………………………………………………………………………….29 Conclusion……………………………………………………………………………………………………………………………….42 Healthbridge: Evaluation design and methods…………………………………………………………………………….44 Background to evaluation………………………………………………………………………………………………………..45 Overview of evaluation……………………………………………………………………………………………………………45 Ethics……………………………………………………………………………………………………………………………………….54 Strand 1: Activity and outcome monitoring……………………………………………………………………………..57 Strand 2: Organisational surveys and collaborative discussion…………………………………………………67 Strand 3: In-depth case studies………………………………………………………………………………………………..73 Drawing it all together – meta-analysis……………………………………………………………………………………96 Conclusion……………………………………………………………………………………………………………………………..100 Healthbridge: Findings……………………………………………………………………………………………………………….101 Section One: The range of Dementia Adviser and Peer Support Network services…………………102 Section Two: The evolution, establishment, delivery and governance of Dementia Adviser and Peer Support Network services Section Three: Integration, sustainability and transferability within wider health and social care landscape………………………………………………………………………………………………………174 Section Four: Influence on well-being of people with dementia and carers……………………………189 Section Five: Contribution of Dementia Adviser and Peer Support Network services to well-being and resilience. Accessibility of services; information and involvement; making choices and independence………………………………………………………………………………………..237 Section Six: Sustaining the implementation of Dementia Adviser and Peer Support Network sites and their contribution to the aims of the National Dementia Strategy…………….254 Conclusion……………………………………………………………………………………………………………………………..260 Healthbridge: Discussion……………………………………………………………………………………………………………262 Working with people living with dementia, working with services…………………………………………262 Critique of methods……………………………………………………………………………………………………………….292 Recommendations…………………………………………………………………………………………………………………297 Summary……………………………………………………………………………………………………………………………….302 3 References…………………………………………………………………………………………………………………………………303 Appendices…………………………………………………………….....……………………………………………………………….315 4 HEALTHBRIDGE: The National Evaluation of Peer Support Networks and Dementia Advisers Executive summary Aims 1. To describe the range of Peer Support Networks and Dementia Adviser services, their evolution, establishment and delivery and governance characteristics. 2. To assess the models of Peer Support Networks and Dementia Advisers in relation to: influence on the well-being of people with dementia and carers; contribution to achieving the objectives of the National Dementia Strategy; integration, sustainability and transferability within the wider health and social care economy. 3. To identify ways in which Peer Support Networks and Dementia Advisers contribute to the well-being and resilience of people with dementia and carers, specifically in relation to: accessibility of services; involvement and information; support for making choices and independence. Background The National Dementia Strategy for England (Department of Health, 2009a) recommended Dementia Adviser and Peer Support Network services and established 40 demonstration sites within a range of organisational settings. These services aimed to provide people with dementia and carers with information, guidance and advice, thus enabling access to a wide range of support including social groups that enabled peer learning. Many supported the immediate and community networks surrounding people living with dementia. 5 Evaluation methods The evaluation used a mixed methods approach to data collection, representing the breadth of activity across all of the 40 demonstration sites as well as exploring the depth of experience within eight case study sites. Data collection included: • Activity and outcome monitoring: Data which represented the numbers and demographic information of people accessing all 40 demonstration sites; well-being measures (ASCOT). • Organisational surveys and collaborative discussions: Survey data, completed by staff in the 40 sites at three points within the evaluation; collaborative discussions involving lead demonstration site staff and commissioners during five national workshops. • In-depth case studies: In eight case study sites, qualitative interviews with people with dementia and carers (n = 101), including well-being and quality of life measures (ASCOT and DEMQoL), and interviews with staff, volunteers and other stakeholders (n = 82). Patient and public involvement The involvement of people with dementia and carers was integral to the evaluation, with a priority placed upon ensuring that their views and experiences were privileged. This included in-depth interviews in the case study sites as well as well-being questionnaires in all demonstrator sites. Processes developed enabled the inclusion of those without capacity to provide informed consent and those for whom English was not a preferred language. Data collection tools and documentation for use by people with dementia and carers were developed in partnership with Voices North (older people, including those with dementia and carers, who are committed to supporting research). Equality and diversity The evaluation sought to address equality and diversity by ensuring that information about service use by those with protected characteristics was identified through all forms of data sampling and collection, e.g. activity and monitoring data enquired about service usage by those with protected characteristics; sampling of case study sites ensured that those with a particular focus on, for example, black and minority ethnic (BME) communities were included; ASCOT was translated into Urdu, Punjabi and Gujarati; translation facilities were 6 available for the interviews; processes of consent to participate in the evaluation includes processes for those without the capacity consent. Findings Key findings in relation to the needs of people with dementia and carers included: • The timing and flexibility of support from Dementia Adviser and Peer Support Network services resulted in support that was tailored to individual needs and circumstances. • Peer support by and for people with dementia and carers was rooted in identification with others in a similar position, enabling greater confidence and more independence. • Dementia Adviser and Peer Support Network services had a significant role in enabling people with dementia and carers to re-narrate their lives, finding a new life which, though different from life prior to dementia, had meaning, value and purpose and in signposting people with dementia and carers to appropriate other services and support. • New social networks alongside training and awareness raising enhanced social networks and community awareness and understanding, both of which enabled social inclusion. Key findings in relation to organisational design and development included: • Peer Support Network and Dementia Adviser services often filled a gap in support for people with dementia and carers. This had a positive impact upon well-being and quality of life and had resource-saving implications for the local health and social care economy. • The relationship of the demonstrator services to pre-existing services and support for people with dementia and carers was a significant influence on their work, and in some areas service boundaries and remits were unclear, with consequent tensions. • Peer Support Network and Dementia Adviser services had a key role in raising awareness of dementia and tackling stigma. 7 Results and recommendations The Peer Support Network and Dementia Adviser services were able to work successfully to meet the needs of people with dementia and carers (and indeed for the wider range of community and other services at times). These services do enable delivery of some aspects of the National Dementia Strategy (Department of Health, 2009a) and they can deliver on more recent policy statements such as the Prime Minister’s Challenge (Department of Health, 2012) and the White Paper: Caring for our Future (HM Government, 2012). Recommendations for policy and policy implementation – ensure recognition for, and further development of, the conditions under which services providing peer support and dementia advice and information flourish. 1. Peer support and advice and information are essential components of dementia care to meet the needs of individuals, families and communities. Services that provide these need to continue to be promoted in national policy. 2. A key mechanism for achieving this is through more explicit alignment of dementia care as a major public health concern. 3. The need of people to re-narrate their lives and of services to promote inclusion of people with dementia and carers within communities is an issue that transcends ‘health’ services. It is important, therefore, that policy continues to promote dementia care in a way that cuts across sector boundaries. 4. Mechanisms for supporting learning when implementing novel policy initiatives need to be built into Implementation Plans. 5. Greater attention should be given to securing commitment to sustainability before commencing so that unexpected changes in policy do not compromise service delivery. 6. The right balance between the following dynamics is essential to optimise the outcomes: nationally vs locally driven; specialist vs generic provision; consistency of a singular ‘model’ vs flexibility to adapt to varying and changing individual and community need. 8 Recommendations for organisations – ensure that the support and information needs of people with dementia, their families and communities are met and that the conditions are promoted under which services providing peer support and dementia advice and information flourish. 1. People with dementia, their families and communities need peer support, information and advice so assessment of local provision to meet these needs is essential. 2. Commissioning of services that enable peer support and information and advice are recommended to ensure that people with dementia are supported to remain independent and well for a longer period of time than may otherwise be achieved. 3. Innovative services need to have an organisational ‘space’ within and between health and social care organisations if they are to flourish. 4. Achieving equality of access to services requires a very proactive approach and a willingness to identify and work with some characteristics that otherwise result in people being marginalised from service provision. 5. Peer Support Networks and Dementia Adviser services played a role in supporting the learning about dementia of a wide range of staff and communities, and helped to ensure that services were aware of the needs of people with dementia. 6. There is no one definitive model on which to base future service development and attention is needed to local solutions to achieve sustainability within the local health and social care economy. Recommendations for practice – ensure that practices with people with dementia and their families and communities are best able to meet their needs by promoting an environment and culture of inclusion. 1. Peer Support Networks and Dementia Adviser services have a role to play in understanding the needs of people with dementia and their families and communities, and are able to communicate these to services to ensure that services are best able to be attuned to meeting these needs. It is important that their community-based skills and knowledge is recognised as a key part of connecting services with meeting needs. 9 2. The part of staff and volunteers in supporting re-narration by people with dementia and families is a key part of meeting people’s needs and helping people to ‘live well with dementia’. Education needs to address person-centred and relationship-centred care. 3. Peer Support Networks and Dementia Advisers play a part in combating discriminatory attitudes towards ageing and dementia in their communities, and increasing the knowledge of other practitioners. It is essential that this function is enhanced to optimise the capacity of communities to be inclusive of those with dementia. 4. It is necessary to work with other staff and managers in all locally relevant services to ensure that there is good communication and clarity in role and purpose. Recommendations for future research – ensure that research continues to inform, and be informed by, dementia policy and practice, specifically in relation to peer support and advice and information activities. 1. In relation to Healthbridge, there will be valuable information arising from the ongoing implementation of Peer Support Networks and Dementia Advisers. Specifically, a follow-up study should explore: How the demonstration sites evolve over the next 2–3 years and how this illuminates the processes of embedding or mainstreaming services; the views of people with dementia and carers who were part of the Healthbridge evaluation in Peer Support Network services and Dementia Advisers as their journey living with dementia progresses. 2. The outcome of the Healthbridge evaluation locates peer support and advice and information for people with dementia and their carers as a public health issue. Considerable research is required to ensure that all of the learning from the public health field is applied to dementia care, and that we continue to learn how best to ensure that needs are met through recognising dementia as a public health issue. Specifically, the data secured in this project is very rich and warrants re-analysis with an explicit public health frame of analysis. This would be enhanced by collecting further interview data from those people with dementia and carers in the case study sites to form a longitudinal aspect to understanding health literacy and the 10