Learning (Intellectual) Disability and Dementia
  • Learning disability and dementia
  • Learning disability and dementia training
    • Online course toolkit
    • Self-guided study
  • Jenny's Diary
  • Life through a Lens Research
  • Relationships Study
    • Blogs and Podcasts
  • ID-dementia summit
  • Privacy policy
  • Learning disability and dementia
  • Learning disability and dementia training
    • Online course toolkit
    • Self-guided study
  • Jenny's Diary
  • Life through a Lens Research
  • Relationships Study
    • Blogs and Podcasts
  • ID-dementia summit
  • Privacy policy
  Learning (Intellectual) Disability and Dementia

'stand by me'
Relationships Research

what is the research about?

PictureStand 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 will use 'focused conversations' to talk with people in, or previously in, a relationship. We are also interviewing health and social care professionals and family members who have supported one or both partners in a relationship affected by dementia. The study will run from 2021 - 2023 and we will continue to recruit participants until July 2022. We will share updates below and a series of research blogs as the study progresses.
​Click to read our blogs and listen to podcasts.
​


PARTICIPANT recruitment information

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 ​

Please contact Paula Jacobs if you have a learning disability and are (or have been) in a relationship where your partner had dementia. We would also like to hear from you if you are a professional or family member who has provided support. Interviews can be face to face or online.

Meet the research team

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Dr Paula Jacobs, Research Fellow, University of Stirling
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Professor Heather Wilkinson, Co-Investigator, University of Edinburgh
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Dr Karen Watchman, Principal Investigator, University of Stirling
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Dr Louise Hoyle, Early Career Researcher, University of Stirling

Meet the advisory team

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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

Project updates

May 2022

Learning Disability Awareness Week, Scotland

​ Andrew released this recording to share his experience of being a co-researcher and adviser to two dementia research projects at the University of Stirling.

March 2022

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Data collection is currently ongoing.
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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. 

 December 2021

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Our meetings are still online. ​We managed to celebrate Christmas.

We have started collecting data. Please contact Paula@Jacobs@stir.ac.uk if you, or someone you know would like to take part.

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. 

July 2021

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.
Creative Commons Licence
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.