Abstract

Many people with dementia face challenges in trying to live with such a socially stigmatising diagnosis. The World Alzheimer’s Report (2011) suggests that when people with dementia and their families are well prepared and supported around the diagnosis and post diagnosis, then initial feelings of shock, anger and grief are balanced by a sense of reassurance and empowerment. However, how (and if) people are told they have dementia varies widely depending on national policy and practice. Effective diagnosis sharing is a fundamental first step in any person centred approach to dementia care. Many countries are moving away from medical approaches to give more focus on person centred dementia care. There is increasing evidence around the positive benefit and impact people with dementia can bring to their own care contexts. For people with dementia this means that issues of involvement and participation, as well as positive social relationships and being connected to their community, are all important to how they live with their diagnosis. Wider family and support relationships are part of the overall picture around living with dementia, yet what we know about these relationships is limited. The research focus of this proposed international group will be to improve our understanding of how relationships work after a diagnosis. Knowing more about how relationships work will help dementia researchers, people developing national policy, people providing support and care services, and for people with dementia themselves.

Internationally, each of the 3 partner countries is experiencing and predicting rapid growth in the numbers of people with dementia. The UK now has guidance and national policy on diagnosis sharing and post diagnostic support. More globally, findings from the 10/66 Dementia Research Group show a more mixed picture. In Goa, the focus on diagnosis sharing and person centred care is a very recent development. In Taiwan the number of people with dementia is expected to increase dramatically. Taiwan has a national Ten-Year Long Term Care Plan started in 2008, so person centred care is a recent development.The proposed project will support established and early career dementia researchers from UK, India and Taiwan to work together. This group will meet at a four day residential in Edinburgh in August 2012 planned to coincide with conference attendance in Scotland by the senior academics. This meeting will be an opportunity for the group to plan and write an application for research funding.The partners have been chosen to allow for a variety of practice and policy contexts and to build on and strengthen existing academic and practice relationships. Prof Shyu, from Cheng-Gung Univesrity in Taiwan has a well established career focusing on dementia care and nursing. Dr Dias is a senior academic in the Dept of Preventative and Social Medicine, Goa Medical College and is also internationally connected to many of the major dementia networks including the 10/66 Dementia Research Group. Edinburgh University will provide desk, computing, library and other academic facilities to overseas participants who would like to extend their stay as a Visiting Fellow in order to add to the individual research capacity and experience, particularly for early career researchers.Dr Heather Wilkinson will project manage to ensure event coordination, impact assessment, building and sustaining network opportunities and dissemination. The CRFR knowledge exchange team will provide project support. Who will benefit from this research?
Initially the main beneficiaries of the work will be the academic participants and the people with dementia from the Scottish Dementia Working Group from Alzheimer’s Scotland who will also participate and act as advisors to the group.

Early products from the project will be the briefing papers from the three countries which will increase access to, awareness and use of research across national boundaries and will improve the sharing of good practice around improving dementia care. The wider target audience for these will include: carers and providers of care for people with dementia (across public, private and third sector), academics and associates, organisations involving or supporting people with dementia internationally; networks/organisations such as AgeUK, Alzheimer’s Society, Alzheimer’s Scotland and Alzheimer’s Disease International with whom contact is already established.

Longer term impact will be dependant on the successful funding and outcomes from an international research project. The focus of the project findings will be of direct relevance to a wide international policy and practice audience who will be able to use the research findings to inform how post diagnostic support in the dementia care field can support positive social relationships and community connectedness. In this case there is a direct policy and practice audience beyond the academic research audience and a central part of the research funding will be to ensure that mechanisms are included to reach these specific audiences nationally and internationally. Part of these mechanisms will be to have strong public engagement as dementia care is relevant to a large number of carers, people with dementia, families and community support organisations as well as the general public.
How will they benefit from this research?
Findings that inform more effective dementia policy and care have strong potential to contribute to national health as a public policy issue. This contribution will be in the form of better evidence based information at national and international levels that will support service development, post diagnostic care practices, information for people with dementia and their families and supporters. The focus on models of dementia care will inform national policy makers when forming and updating their national and regional policy approaches to dementia care.Depending on the funding of an international project the timelines for impact and benefit are expected to be over the next 5 years, during project development negotiations, through to the dissemination of project findings.Although the experience and knowledge of academic partners from the three nations is crucial, it is the involvement of early career researchers from each country that is integral to the overall approach. It is hoped that their involvement, through longer term project funding, will allow them to be part of a process that moves from establishing research priorities, through comparative data collection and analysis, and to national and international dissemination, public engagement and academic outputs. Each stage will bring with it substantial opportunities to develop research capacity and longer term sustainable international networks. One specific focus of the impact assessment, especially in the latter phases of the project, will be to assess the impact of being involved in the project for the early career researchers.

Aims

The overall aim of the proposed project is to support this existing group of academics to form stronger working relationships through which to share varied national perspectives; and to agree and take forward a joint research funding proposal that will explore post diagnostic relationships for people with dementia. Longer term impact will focus on activity and outcomes relating to grant applications, collaborations and publications.