People with Down’s syndrome are at an increased risk of dementia. Dr Karen Watchman is a researcher, based at the University of Stirling, who specialises in understanding how to help people with learning disabilities to manage their dementia. For World Down’s Syndrome Day (March 21), Dr Watchman discusses myths around Down’s syndrome and how research can help people with both Down’s Syndrome and dementia.
What do you see when you look at the picture above?
Do you see a young couple enjoying a meal? Do you see the difficulties at mealtimes when one partner has a diagnosis of dementia? Or do you only see two people with Down’s syndrome or a learning disability?
People with dementia experience stigma and discrimination. Choices made are not always their own. People with dementia can experience low self-esteem, fewer aspirations for the future, more problems accessing healthcare.
Now read the above paragraph again and substitute ‘people with dementia’ for ‘people with Down’s syndrome’. The difference is that for people with Down’s syndrome this is the reality even before a diagnosis of dementia. How can we best support a population for whom standard dementia assessments and tests are not suitable due to their pre-existing learning disability, who may not understand their diagnosis of dementia and who already experience discrimination and health inequality?
Let’s firstly dispel some myths about Down’s syndrome:
Myth 1: People with Down’s syndrome rarely live beyond middle age
In 1983, life expectancy for people with Down’s syndrome was around 25 years. Now many people live beyond the age of 60. A consequence of this is that more people are now living to an age where they are likely to develop dementia. But what does this mean for families? Longer life expectancy in people with Down’s syndrome is to be celebrated, but the implication for many older parents is that their (adult) child will outlive them – this was not what parents will have been told when their child was born and consequently many have not planned for this eventuality.
Myth 2: All people with Down’s syndrome will develop dementia
Although most people with Down’s syndrome will experience brain changes as they age, not everyone will develop Alzheimer’s disease or another type of dementia. Whilst having Down’s syndrome does put a person at increased risk (estimated at 1in 3 people in their 50s, and closer to 2 in 3 aged over 60) it is not inevitable for all.
Myth 3: The diagnosis of dementia should be kept from people with Down’s syndrome to avoid upsetting them and because they wouldn’t understand anyway.
Just as with all of us, people with Down’s syndrome will typically know when something is wrong. However, we are less likely to talk about the diagnosis with someone we think may not understand. It is important to remember that the words we use to talk about being ill are pitched so that they are understood and have meaning for each individual – this may, or may not, include the word dementia in the conversation.
Myth 4: People with Down’s syndrome will not have a supportive partner.
Increasingly people with Down’s syndrome are married or in long-term relationships. It is important to respect this in the same way as if neither partner had a learning disability. The partner of a person with Down’s syndrome and dementia needs support in their own right, rather than as part of the same support arrangement or package of care.
Myth 5: People with Down’s syndrome do not respond to the same non-drug treatments (including social and environmental interventions) as everyone else who has dementia
This is not so straightforward. We are seeing more research and hearing anecdotal evidence that non-drug interventions such as music, reminiscence and technology are effective in supporting people with dementia. However, the studies that have taken place did not include people with Down’s syndrome.
Individuals with dementia can live well, develop new relationships and maintain existing ones. Understanding life history and previous experience can help us to know the ambitions and preferences of the individual with dementia, and to introduce meaningful strategies and programmes that contribute to a sense of wellbeing.
Now read the above paragraph again and substitute ‘individual with dementia’ for ‘individual with Down’s syndrome and dementia’. Until we see beyond the label of Down’s syndrome and respond appropriately to both age- and dementia-related changes in each individual, we will continue to struggle to know how best to support people with Down’s syndrome after a diagnosis of dementia.
This is why I have an Implementation Grant from the Alzheimer’s Society, Life Through a Lens. Along with Dr Kate Mattheys and co-researchers who have a learning disability, we will test non-drug therapies to support people with a learning disability who have developed dementia. The therapies will be meaningful to the person and may include music, reminiscence, environmental adaptation or technology.
- Karen’s new book Intellectual Disability and Dementia: A Guide for Families is published on World Down Syndrome Day, 21 March 2017.
- For more information about learning disability and dementia please read Learning disabilities and dementia section on the Alzheimer’s Society website.
- Images are from Jenny’s Diary, a resource to support conversations about dementia with people who have a learning disability, developed with the support of an Alzheimer’s Society Dissemination Grant in 2015. Jenny’s Diary is also available in German, Mandarin Chinese and Norwegian.