Living with a learning disability and young onset dementia

Ask most people within the general population about learning disabilities and the majority will talk about children born with Down’s syndrome or autism. People with no experience of learning disabilities will often assume that the lives of these children will be limited, and that progression into mature adulthood won’t occur.

Thanks to advances in medicine and care, however, people with learning disabilities can expect to live longer than ever before, although this isn’t without associated risks. For people with Down’s syndrome, the statistics related to developing dementia are stark: 10-30% of people aged 40-49 and 30-75% aged 60-69 are likely to develop some form of dementia.

The numbers of people under 65 living with a learning disability and young onset dementia are growing, but whilst the health and social care sectors have some fairly distinct pathways of care and support for learning disabilities in isolation, and likewise for dementia, how to support a person living with both isn’t historically well understood.

The challenges that usually accompany the diagnostic process for a younger person who suspects that they may have dementia are significantly magnified for a person with a learning disability. Early symptoms of dementia are often dismissed as they are masked by ‘behaviours’ which are associated with having a learning disability rather than developing dementia, and this is compounded by the idea that the person is likely to be ‘too young’ to develop dementia. Often the standard tests aren’t suitable, scanning procedures may not be well tolerated, and even gathering a reliable history of the person’s life may not be possible if they have been institutionalised since childhood.

Helping a person with a learning disability to understand a diagnosis of dementia is an immensely challenging task for the professionals who make that diagnosis, and the people who are supporting the person with a learning disability. Assuming an accurate diagnosis of dementia has been made, deterioration can be rapid, often impacting severely on other aspects of the person’s life, such as mobility.

Many learning disability services aren’t equipped for supporting a person with a learning disability and dementia, and that, combined with the way in which many local authorities prefer to place people with dementia into specialist dementia units, can mean that for a person in their 40’s or 50’s with a learning disability and dementia the only option for their future care is to move into a nursing home with people in their 70’s, 80’s and 90’s.

Whilst many care homes specialise in dementia, few have the understanding needed to support a person who is also living with a learning disability, and often the person ends up with very little say in where they live. For some people with a learning disability who have potentially lived in the same support service for many years, sometimes more than half their lifetime, a move into a dementia specialist care home can lead to a very poor quality of life and may even hasten death.

Increasing the understanding of the unique circumstances a younger person with a learning disability and dementia faces is vital if they are to have any chance of living well with dementia. For this reason I am immensely proud to have been working with learning disability charity MacIntyre for over a year, supporting the work of their Dementia Special Interest Group.

The Group meets three times a year to discuss a variety of aspects related to supporting people with a learning disability and dementia, and has produced some free resources that are available on their website. Alongside this work, I have also conducted site visits to meet and chat with staff and the people they are supporting, listen to problems, advise, and talk about things that they can change or think about for future-proofing their service.

I have produced reports to services, with recommendations and signposting, and reports to senior management. Indeed, such is the interest in the ground-breaking work MacIntyre are doing in this area, we were invited to present a summary of it to the Alzheimer Europe conference last year in the first ever Dementia and Intellectual (Learning) Disability Parallel Session.

So, slowly but surely there are positive signs of increasing awareness, and it can only be hoped that in the years ahead this understanding will continue to grow so that people with a learning disability - who are already hugely marginalised in society - can aspire to live well with any type of dementia that they may develop in the future.

Beth Britton is a freelance campaigner, consultant, writer and blogger.  To find out more about Beth’s work, please visit her website

Photo caption: Beth Britton with the MacIntyre Dementia Special Interest Group.

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