An international collaboration to explore person centred approaches to dementia and the role of relationships in post diagnostic support.

Lead Research Organisation: University of Edinburgh


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 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.

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.

Planned Impact

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.


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Description BACKGROUND
Dementia is now a public health priority for both high income and middle income countries (HICs and LAMICs), (World Health Organisation, 2012).
This report highlights the main intended outcomes of the project as being: the development of an international collaboration to explore person-centred approaches to dementia undertaken by an existing group of connected academics and early career researchers within the field of dementia research and practice. Membership of the core group includes: academics (six) and early career researchers (seven) from the UK (University of Edinburgh and Alzheimer Scotland); Taiwan (Chang Gung University) and India (Goa Medical School, Sangath a Goa-based NGO and representatives of the Alzheimer's and Related Disorder Society of India, ARDSI). This collaboration enabled the formal establishment of the TIES Dementia Research group (Taiwan, India, England and Scotland Research Group) and the development of a coherent international exploration of person-centred approaches to dementia; as well as the role of relationships and post diagnostic support of people living with dementia within three international countries.

The formative objectives of this international collaboration were to:
1. share current and emerging person-centred model of dementia care research.
2. develop ways of understanding and working with people with dementia which can underpin epistemological practical aspects of research.
3. build on these shared ways of working to produce an international standard collaborative research programme focussing on emerging core research questions that challenge the experiences of stigma people with dementia.

DEVELOPMENT OF COLLABORATIVE PARTNERSHIP: Two key reasons were given as to the choice of partners to undertake this work:
a. to give a background of the development of theoretical, practice and policy contexts within dementia care. For example UK has a long-standing development around models of person centred care (Kitwood 1997), in contrast to Taiwan who are still utilising the medical model only just beginning to translate the person centred literature; whilst in Goa region of India has a more medium-term history in their interpretation of person centred models.
b. to build on strengthening the existing academic practice relationships.

OUTCOMES: The continuing development of research proposals relating to the policy, practice and theoretical examples of dementia care in Taiwan, India, England and Scotland. This has been undertaken via Skype meetings involving lead members of the research group, as well the opportunity for face-to-face meetings of members of the group. In addition group members have been able to present their research at an international conference and symposium at: Chang Gung University (November 2014) funded by the Taiwanese government: with presentations from TIES members, the Minister for Health (Taiwan); Taiwan Alzheimer's Disease Association (TADA); Singapore Alzheimer's Disease Association, as well as Glenn Rees Chair Elect of Alzheimer's Disease International. Also in March 2015 five group members presented their research specifically relating to dementia friendly communities at the Goa Medical College with attendees drawn from both staff and students. Since the symposium presentations offered by TIES members from Taiwan and Scotland, student nurses have highlighted the development of their knowledge in relation to other theoretical approaches via Facebook.

We are working more with local partners on DFC work
Exploitation Route RESEARCH:The formal establishment of the TIES Research Group has generated the formulation of a specific and substantial funding proposal relating to: A cross cultural exploratory study of dementia friendly communities and health care systems in Taiwan, India, England and Scotland. This specific study will explore current and developmental aspects of dementia friendly communities with both an urban and rural context over a five year period. The funding proposal will be submitted to ESRC in early 2016, with matched funding from the Taiwanese Research Council.

Other smaller funding proposals are also being considered in relation to:
•The experience of hallucinations for people living with dementia in India and Scotland
•A cross-cultural study of living well with dementia within Taiwan, India, England and Scotland.

partnership working continues - with sharing of individual work and a research meeting in Taiwan in August 2016
Sectors Communities and Social Services/Policy,Education,Environment,Healthcare,Other

Description RESEARCH: The first meeting undertaken during the workshop event in Edinburgh July 2013, enabled the agreement of the aims and an outline and intended outcomes of the international group. Group membership includes: Taiwan: Chang Gung University •Professor Yea-Ing Lotus Shyu, Healthy Aging Research Centre, School of Nursing •Associate Professor Jeng Wang, Department of Gerontological Care and Management . Associate Professor Wen-Chuin Hsu, Director & Visiting Staff, Department of Neurology •Associate Professor Yi-Chen Chiu, Healthy Aging Research Centre, School of Nursing •Hsiao-Ping Wang, RN. MSN. PhD candidate, Department of Nursing •Li-Min Kuo, RN, PhD candidate, Department of Nursing India: Various academic and voluntary sector organisations •Dr. Amit Dias, Assistant Professor, Preventive and Social Medicine, Goa Medical College and founder secretary of the Dementia Society of Goa and the co-ordinator of the 10/.66 Dementia Research Group, India. •Mr. A.T. Jotheeswaran, Research Fellow and PhD candidate at the Indian Institute of Public Health Hyderabad and Centre for Public Mental Health, Institute of Psychiatry, Kings College, London •Ms. Nilanjana Maulik, Secretary General, Alzheimer's and Related Disorders Society of India and MSc in Dementia studies candidate (University of Stirling, UK). •Mr. B Varghese, Project Officer, Alzheimer's and Related Disorders Society of India and MSc in Dementia studies candidate (University of Stirling, UK) Scotland: academic and voluntary sector organisations •Professor Heather Wilkinson, Director of Research and Knowledge Exchange in the School of Health in Social Science and Assistant Director for the Centre for Research and Families and Relationships, University of Edinburgh (UoE). Also co-founder of the Scottish Dementia Working Group (SDWG). •Dr. Sarah Keyes, Research Assistant, Ageing and Dementia, School of Health in Social Science, UoE •Ms. Eva Joanna Alexjuk (Jo), Lecturer in Dementia and PhD candidate, School of Health in Social Science, UoE •Ms. Liz Taylor, co-opted member of the SDWG and PhD candidate at UoE. •Ms Lindsey Kinnaird, Research Manager, Alzheimer Scotland. Four presentations of policy, practice and theoretical examples of dementia care in Taiwan, India, England and Scotland; as well as five presentations relating to other aspects of dementia research by early career researchers to engender debate and knowledge exchange relating to: •Different enactments of hallucinations in dementia within a community mental health setting •The journey from dementia diagnosis to final bereavement: an exploration of anticipatory grief, loss and bereavement of family carers of people living with dementia. The workshop also offered: Knowledge exchange and research capacity building enabling the sharing and development of theoretical and methodological issues on the changing nature of social research across contemporary cultural contexts. In particular person-centred and social disability models relating to dementia care, with explicit experience of the Scottish Dementia Working Group (SDWG) and the involvement of people living with dementia in the formulation of policy and practice. EDUCATION: During the course of the funding period there has been a purposeful cascading of theoretical, policy and practice examples of dementia care to others out-with the TIES Dementia Research group. This has incurred during conference and symposium presentations by members of the TIES Research Group to staff and students in Taiwan (60 attendees) and India (30 attendees). In addition a guest seminar presentation by Mr. Jotheeswaran relating to his work for Alzheimer's Disease International for on-line MSc in Dementia students (seven) undertaking the postgraduate programme: International Experience, Policy and Practice at the University of Edinburgh during semester one, academic year 2013/2014. The proposal of student exchange opportunities and continued PhD supervision between Chang Gung University Taiwan and the University of Edinburgh. KNOWLEDGE EXCHANGE: Each of the face-to-face meetings in UK (Scotland 2013), Taiwan (2014) and India (2015) offered members the opportunity to visit specific dementia care practice environments within each country. Work continues with the international partners - Alexjuk attended and presented at a research meeting in Taiwan in August 2016 and in India in 2017. We have ongoing online and Skype discussions with the key partners. There is current discussion (February 2018) relating to some international work developing with Iran and with the Goa, India partner.
First Year Of Impact 2013
Sector Education,Healthcare,Other
Impact Types Cultural,Societal