In sickness and in health
Dementia does not discriminate. We are all aware of, or have experienced first-hand, the stress and distress caused when one person in a relationship receives a diagnosis of dementia. The subsequent impact on both this individual and their partner cannot be underestimated with recognition needed of the specific requirements of both.
Now imagine that this is a relationship between two people with a learning disability. How do you start a conversation about dementia with the person who has the diagnosis, let alone their partner? Dementia doesn’t discriminate, but neither does love.
Here are the first 5 points to consider:
- Don’t assume that both people in the relationship need the same information at the same time, or in the same format.
- There may be a sense of relief for both partners at knowing something is wrong.
- Relationships will change; the health and wellbeing of the partner should not be overlooked especially as dementia progresses.
- The diagnosis should not stop someone, and those close to them, from continuing to do things that they enjoy.
- Friends of the couple may not know what to say or do.
I can hear you asking how this is specific to people with a learning disability and how it differs from couples in a relationship generally. Well of course it isn’t different at all. Yet, we are so much more likely to respect the wishes of, and acknowledge the points above, for couples who do not have a learning disability.
Why do we find this so difficult when the individuals involved have a learning disability? There is a misconception that people with a learning disability lack the capacity to marry or to have intimate relations, but that is a different blog post.
There are two main differences when we have conversations about dementia: firstly, I often hear ‘she wouldn’t understand’, ‘I don’t want to upset him’, ‘we don’t know what to say’. This means that the person with the diagnosis is not even given an explanation of the changes they are experiencing – although the word dementia does not need to be used if the person has no understanding of it.
Secondly, the relationship is not acknowledged, with the partner not always recognised or included in conversations and decisions.
This leads me to point six:
6. Jenny’s Diary has been specifically developed to support conversations about dementia with a person with a learning disability, their partner and friends.
This new free resource developed in collaboration with staff and customers at Hansel, Ayrshire, Scotland features actors with a learning disability playing key roles. It takes a pictorial approach to supporting conversations about dementia and introduces a four-stepped approach to talk about the diagnosis with Jenny and with her partner, George. Points 1-5 above are included and acknowledged.
People with a learning disability already face obstacles in their relationships; everyday things that other couples take for granted. Let’s respect these relationships rather than add to the obstacles.
How can I get a copy?
My website about learning disability and dementia with additional information and resources can be found here
Jenny’s Diary was developed with support from Alzheimer’s Society Dissemination grant by Karen Watchman, University of the West of Scotland, Irene Tuffrey-Wijne, St George’s University of London & Kingston University and Sam Quinn, University of the West of Scotland.
Dr Karen Watchman, Alzheimer Scotland Lecturer in Dementia and Depute Director of the Alzheimer Scotland Centre for Policy & Practice, University of the West of Scotland.
The Alzheimer Scotland Centre for Policy & Practice is a partnership with University of the West of Scotland conducting applied research and developing education and social enterprise initiatives. As former Chief Executive of Down Syndrome Scotland, I have worked in the field of dementia care and learning disabilities for many years in both practice and academic settings. I have produced a range of accessible and evidence-based information for people with a learning disability and carers including Supporting Derek, and am a member of the programme team delivering the MSc Later Life Studies at UWS.