what is the research about?
Stand by Me project logo
This UK-wide research, named Stand by Me by the advisory team, aims to find out more about the experiences of couples with a learning disability when one partner has dementia. We have used 'focused conversations' to talk with people in, or previously in, a relationship. We have also interviewed health and social care professionals and family members who have supported one or both partners in a relationship affected by dementia. The research will end in 2023 and we have now collected all of the data. We would like to thank all participants and all organisations who have helped us so far by telling people about the study.
We will share updates below and a series of research blogs as the study progresses.
Click to read our blogs and listen to podcasts.
Meet the research team
Dr Paula Jacobs, Research Fellow, University of Stirling
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Professor Heather Wilkinson, Co-Investigator, University of Edinburgh
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Professor Karen Watchman, Principal Investigator, University of Stirling
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Dr Louise Hoyle, Early Career Researcher, University of Stirling
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Meet the advisory team
Andrew Doyle, Professional Advisor, Key
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Jill Carson, Consultant in Public Policy, Alzheimer Scotland
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Louise Boustead, Professional Advisor, Key
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Jan Murdoch, Communications and Information Officer, Key
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Professor Matthew Janicki, National Task Group on Intellectual Disabilities and Dementia Practices, USA. Guest advisor
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Project updates
July 2022
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We are delighted that our advisory group are meeting face to face again. The first 'in person' meeting was in Dumfries.
We looked at the stories of couples who have taken part and talked about different ways we could share research findings. The cake was good! |
june 2022
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Andrew and Paula presented a poster at the 7th World Congress on adult capacity at Edinburgh International Conference Centre from 7th-9th June 2022. The poster will also be presented at Alzheimer Europe conference in October 2022.
Download a copy of the poster here |
May 2022
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Learning Disability Awareness Week, Scotland
Andrew recorded this podcast to share his experience of being a co-researcher and adviser to two dementia research projects at the University of Stirling. Click the arrow to start (photographs and audio). |
March 2022
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Data collection is currently ongoing.
We are able to meet face to face to talk if this is preferred. Some interviews are taking place using Zoom or Teams. Please let us know if you, or someone you know, would like to take part. We will talk about how you would like to be involved. |
January 2022
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Development of the information we are sharing about the research has been led by Michael McKernon, Andrew Doyle and Louise Boustead. Click the links below for examples of their work.
Research flyer Sample information sheet Sample consent form A brief overview of who we would like to include in the research is shown below. Participant briefing paper |
December 2021
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Our meetings are still online. We managed to celebrate Christmas. We have started collecting data. We have submitted our first article for publication. |
october 2021
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The Stand by Me research team were finalists in the Herald Diversity Awards in the Diversity through Education category.
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July 2021
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Paula presented an overview of the study at a European conference (online). The presentation can be viewed here.
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This work was supported by the Dunhill Medical Trust. Image at top of page reproduced from Jenny's Diary with permission.
