Learning (Intellectual) Disability and Dementia
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  Learning (Intellectual) Disability and Dementia

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REFLECTIONS of being part of an inclusive research team

10/5/2022

 

Author

Andrew Doyle MBE
​Andrew released this recording during learning disability awareness week 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 the video.

Facilitating conversations about dementia with couples with a learning disability

6/3/2022

 

Author

Dr Paula Jacobs

One reason often cited for not including people with a learning disability and dementia in research is the anticipated difficulty with verbal communication. Additionally, sometimes people with a learning disability have not been told of their diagnosis of dementia. Thus, in most research studies that include people with a learning disability and dementia, researchers don’t actually mention the word dementia or ask people about it directly. For us, it was important to have more open and honest conversations using appropriate tools, and to be sure that couples knew about the diagnosis. We thought carefully about how to best facilitate those conversations to ensure they are accessible.

Exploring relationship journeys – what are we doing?
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As part of our advisory group, we routinely use visual aids to aid communication during and between meetings, and when summarising our work. This includes using a traffic light system to report if we are on time with tasks, and using photosymbols and easyread material to develop accessible agendas and minutes. When thinking about how to do our interviews with couples, we looked at existing tools and decided to draw on social stories and life stories to help develop our own visual images. We want to learn more about the story of each couple: how they met, response to their relationship, life together before the dementia diagnosis and what may have changed afterwards. After some discussion, we decided that it would be helpful to use a roadmap to visualise each relationship, with signposts of the past, present and future. The next step was to identify or develop images of people, individuals and couples, to explore different stages along the journey of each couple. However, we were concerned that many of the images we looked at might be too leading as people in them show certain emotions and this might influence the answers given. We decided to work with an artist to create our own images to reflect different stages relationships.

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Rachel's experience on placement with stand by me

8/2/2022

 

Author

Rachel Carney, Student MSc Health Research, University of Stirling

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My name is Rachel. I am a student at the University of Stirling and I am working in the NHS in a psychiatric liaison team. My job involves assessing the mental health of people with a learning disability, and I have worked in dementia services in the past.
 
As part of my studies at the University of Stirling, I had the opportunity to undertake a virtual research placement with Stand by Me.
 
​The team were all very friendly. 

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In my placement I learned about: 
  • The process of getting ethical approval for Stand by Me
  • Helping with a literature review to explore what is already known about couples with a learning disability and dementia 
  • Looking at best practice in involving people with a learning disability and dementia in research 
  • How to communicate research in accessible ways 
  • How research gets funded and how researchers need to manage their budgets

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The story behind Stand by me

2/12/2021

 
Andrew has been married for 14 years.
He has a learning disability and dementia.
He is the inspiration and driving force behind Stand by Me.
In this podcast, Andrew talks with Paula and Jan about why this research is so important.

Authors

Andrew Doyle, Paula Jacobs, Jan Murdoch

four Top tips for making research accessible

2/11/2021

 

Michael mckernon and paula jacobs

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Michael is an expert by experience in using easy read and photosymbols.
He helps to make sure people can understand our information.
For this blog Michael is sharing his four top tips for making research              information accessible.

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Tip 1 
When making information sheets have a picture on the left-hand side.
Write the text on the right-hand side.


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    Click to return to Stand by Me research update page.
Creative Commons Licence
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