Learning disability and dementia
Stand by Me - Supporting couples with a learning disability where one partner has dementia
Dr Paula Jacobs, University of Stirling;
Dr Karen Watchman, University of Stirling;
Professor Heather Wilkinson, University of Edinburgh.
Learning disability and dementia
People with a learning disability are living for longer and are enjoying relationships and marriages. Alongside this, we know that people with a learning disability, especially Down’s syndrome, are at an increased risk of dementia as they age. For example, the average age of onset of dementia in people with Down’s syndrome is early fifties, with figures suggesting that approximately 1 in 3 people in their 50s will have dementia; a figure that rises as life expectancy extends beyond 60 (Strydom et al., 2013; Bayen et al., 2018). Few studies have explored the experiences of people with a learning disability who have dementia, even though we know of the higher risk. The Stand by Me study at the University of Stirling is the first study to date to investigate the relationship between couples who have a learning disability when one partner has a diagnosis of dementia. The idea for the study came from a married man with a learning disability who has dementia. He expressed concern that his relationship would change in the future and it became apparent that no research or guidance was available to support him, his partner or their ongoing relationship.
The Stand by Me study led from University of Stirling is investigating the relationship between couples who have a learning disability when one partner has a diagnosis of dementia. We believe that it is important to understand how dementia affects couples with a learning disability. Relationships are important for people’s wellbeing and there has been a shift over past decades in policy and practice to recognise the right of people with a learning disability to have intimate relationships. However, there is also an awareness that people with a learning disability continue to face barriers to form and maintain relationships. We hope that our study will provide essential information that can help to sustain relationships, support positive interactions, and improve the wellbeing of both partners.
Who is involved?
The project is recruiting across the UK until summer 2022 and is involving three groups of participants:
- People with a learning disability who are in a relationship affected by dementia (or have been in a relationship in the past). We are speaking to couples together or separately, and the involvement of both partners is not essential.
- Social care staff with current or previous experience of providing support to one or both partners in a relationship affected by dementia.
- Family members who have, or had, a relative in a relationship where one partner has/had a diagnosis of dementia.
Social stories will be used to include people with a learning disability in the research, sometimes including the partner with dementia. This involves celebrating each relationship and how it has changed over time, including hopes and fears of partners (see graphic). An advisory group including adults with a learning disability is guiding the research which is funded by the Dunhill Medical Trust.
Would you like to find out more?
If you are interested in taking part, or if someone you know may like to be involved, please contact Paula Jacobs for more information including in an easy read format: [email protected]. We can talk to you using Zoom or Teams or by telephone or can travel to meet you if preferred and in line with government guidelines at the time. You can also read more about the study and our blogs on the project website: www.learningdisabilityanddementia.org/relationships-study