On the 9th May 2022, the Scottish Dementia Research Consortium launched our Annual Report.
In addition to providing an overview of all dementia and brain health research in the past year, we also have a section in the report dedicated to each of the SDRC research themes. Professor Debbie Tolson, Dr Leah Macaden and Dr Louise Ritchie from the Living with Dementia theme, have provided an overview of research happening across Scotland relating to this theme. You can read this excerpt from the report below.
An important aspect of Living with Dementia Research is to ensure that we embrace impactful research that makes a difference to people’s lives.
A lot of the work over the past year has been around developing and strengthening relationships and collaborating. In particular, we have been strengthening research connections with people with lived experience of dementia. Alzheimer Scotland’s Active Voices Network, Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN) have been working closely with us to strengthen research involvement and to develop involvement best practice including co-researcher models.
Collaborations are central to dementia care and practice-based research success.
Some more examples of collaboration in this theme include
- ENRICH Scotland (https://www.nhsresearchscotland.org.uk/research-in-scotland/facilities/enrich) which is creating a forum and infrastructure for researchers investigating care home practice and care home life.
- connecting applied researchers with leading NHS clinicians and practitioners.
- Connecting Communities https://connectingcommunities.co.uk/ who are working to extend research reach in the Highlands.
Work Happening in Theme
Recently Completed Work
Dr Julie Watson and the Getting on with Life (GO) research team from the University of Edinburgh, Durham University and Innovations in Dementia. This was a three year long project, funded by Alzheimer’s Society. They tested a seven-week online programme designed with people with dementia living in England and Scotland. It covers topics such as relationships, restoring confidence, being valued and respected by others and getting on and living your life. Findings show that GO can help participants to achieve their personal goals and live as well as their circumstances allow. It enables people with dementia to connect, share and learn from each other’s unique knowledge.
Professor Kathryn Waite, Professor in Digital Marketing at Heriot Watt University, has recently completed a study funded by a British Academy/Leverhulme Small Grants Scheme. The research investigated experiences of close family members managing financial affairs of a relative with dementia. Fifty-three interviews were completed with family carers, solicitors and financial service providers. The findings contributed to the Scottish Government Fair Work Nation Consultation response.
Dr Tom Russ, Professor Heather Wilkinson, Lindsay Kinnaird, Rose Vincent, and Rosie Ashworth at the University of Edinburgh interviewed people who received a diagnosis of dementia by phone or video-call during the Covid-19 lockdown about their experience. This UKRI-funded project is being co-produced with a group of people with lived experience. They are now analysing the data and will be reporting soon. In the meantime, the project was featured in the World Alzheimer Report 2021 and the first in a series of podcasts resulting from the team has just been released, available on Spotify, Apple, and Google (“Diagnosing Dementia During Covid-19”).
The impact of the pandemic continues to be significant on those living with dementia and subsequently, research in our theme. At the University of Dundee, Tharin Phenwan has prepared a useful rapid review of internet mediated research methods with people with dementia. The paper explores practical, technical and ethical considerations (Phenwan et al 2021). Whether an experienced researcher or new to dementia research, if you are thinking about online options this is a helpful resource.
If you want more information about these studies please get in touch with us and we can connect you with the relevant research teams.
Current and New Projects
Dr Rhoda MacRae with Professor Debbie Tolson, Dr James Taylor from the University of the West of Scotland, Dr Kirstin Anderson from Napier University, Dr Tom Russ and Professor Lindsay Thompson from the University of Edinburgh were funded by the Dunhill Medical Trust in June 2021 to identify and develop new effective ways to improve the health and wellbeing of the increasing numbers of older people living with dementia in prison. This project involves four Scottish prisons with the largest population of older men. The research will map the current healthcare pathways in the four establishments before by recruiting for case studies to understand dementia related experiences. The findings of this research will then be used to improve the health and wellbeing of older prisoners with dementia.
Dr Nick Jenkins, Dr Anna Jack-Waugh and Dr Louise Ritchie from the University of the West of Scotland received a Network Grant from the Royal Society of Edinburgh to develop the Multispecies Dementia International Research Network as the international forum. Established in Scotland in October 2019, the network currently consists of more than 60 academics from across the UK, Europe, and North America, working across the arts, humanities, social sciences and medical sciences https://multispeciesdementia.org/project-members/). This award will provide new opportunities for the network to meet, share their research and develop proposals for future research.
Dr Leah Macaden from the University of the Highlands and Islands has been awarded the Churchill Fellowship’s COVID–19 Action Fund to develop and evaluate the first comprehensive dementia education resource for blended learning in care homes / home care contexts. This resource has attracted significant interest and opportunities for international collaboration.
Phenwan, T., Sixsmith, J., McSwiggan, L., & Buchanan, D. (2021). A Rapid Review of Internet Mediated Research Methods with People with Dementia: Practical, Technical and Ethical Considerations. The Qualitative Report, 26(11), 3318-3341. . https://doi.org/10.46743/2160-3715/2021.5089
Read the Annual Report 2021/22 in full here