Stand by Me
This page has information about dementia which might be hard to read, watch or listen to. We hope that you will look at the content, but please look after yourself at the same time. You may wish to watch or listen with someone you can talk to about dementia.
Andrew and Lynn Doyle
Many people with a learning disability enjoy being in a long-term relationship or marriage. As all couples get older their health may change. One of these changes may be a diagnosis of dementia.
This research wanted to find out how relationships between people with a learning disability are supported when one partner has a diagnosis of dementia. Andrew Doyle MBE was the driving force behind an application to the Dunhill Medical Trust who funded the research. Andrew is married to Lynn and was worried about how his diagnosis of dementia might affect their relationship.
They had the first dance at their wedding to the song Stand by Me.
The Stand by Me research team included researchers and advisors, some of whom have a learning disability. Researchers Professor Karen Watchman, Dr Paula Jacobs and Dr Louise Hoyle from University of Stirling, and Professor Heather Wilkinson, University of Edinburgh were supported by Andrew Doyle, Lynn Doyle, Louise Boustead and Jan Murdoch from Key and Jill Carson from Alzheimer Scotland.
We made a video about the research
Collectively, the eight couples with a learning disability who told their stories in the research had enjoyed over 170 years of relationships, with most being together for 20 years or more. This video will explain more about what we did.
Video length 7:29
Collecting the information
We interviewed 15 family members and support staff who knew couples with a learning disability affected by dementia. We talked to five people with a learning disability or learning disability and dementia. To help this conversation we created a roadmap of the past, present and future and nine new images of couples at different stages in a relationship. We did not want to make any assumptions about the ethnicity, age or gender of the couples, or even which partner had dementia.
Past, present and future roadmap
Stories of eight couples with a learning disability where one partner has a dementia diagnosis
You can find out about the stories of couples who took part in the research. Their names have been changed. Click to download and listen to an audio version (approximately 6 minutes each) or a printed version to read.
Story 1: Jimmy and Ann |
Story 2: John and Maggie |
Story 3: Laura and David |
Story 4: William and Janet |
Story 5: Sarah and Ben |
Story 6: Mary and Paul |
Story 7: Tom and Rose |
Story 8: Phoebe and Adam |
You can download the images we developed and use them in conversation.
|
|
|
|
|
|
|
Publications
Click to download publications from the research
- Stand by Me project report
- Stand by Me easy-read report
- Systematic literature review: Experiences of people with intellectual disability and dementia
- Easy read systematic literature review: Experiences of people with intellectual disability and dementia
- Scoping review: Couples with intellectual disability where one partner has dementia
- Easy read scoping review: Couples with intellectual disability where one partner has dementia
For more information about Stand by Me, please contact Professor Karen Watchman Karen.Watchman@stir.ac.uk
