Within MacIntyre we are acutely aware of the statistics around learning disabilities and dementia - for example that one in three people with Down’s syndrome will develop dementia in their fifties, and in people with other learning disabilities aged sixty-five plus, twenty percent will develop dementia - but for wider society there is still little said about how dementia disproportionately impacts people with learning disabilities.
Raising awareness of the impact of dementia on people with a learning disability doesn’t just stop at statistics. Other challenges exist, and have done for many years, around delayed diagnosis often due to diagnostic overshadowing (where one condition is mistaken for, or written off as, another) and difficulties accessing post-diagnostic support (which is in-common with much of wider society too).
All of this means that having good dementia support in place before the person is diagnosed is imperative if each individual is to continue to lead a life that makes sense to them in a rapidly changing cognitive landscape.
Life after a dementia diagnosis when you have a learning disability
Once a diagnosis is made, questions about how and where the person will be supported often loom large. At MacIntyre, our view is simple: The person must live in the place they call home and be supported, through robust person centred approaches, to maintain a routine that works for them.
The person should remain at the centre of their care and support with choice, control and independence as standard – dementia doesn’t change that - although flexibility and creativity are absolutely vital for support staff to ensure those aspirations are a reality throughout a person’s life with dementia.
Therapeutic interventions to enhance quality of life
Understanding what best practice support looks like is vital because drug treatments are limited for people with dementia, and many people with learning disabilities are often already on multiple medications and subject to polypharmacy. So, what are the non-drug therapies we love the most?
Within our services we champion life story work, the use of ‘top 10’ lists and music, maintaining social interaction and following the other aspects of the Five Ways to Wellbeing, and ensuring that the person’s environment works for them (auditing their home, workplace and lifelong learning service using these tools). This is crucial to ensure that hobbies, as well as activities of daily living, can be continued for as long as possible in a way that the person can participate in as much as they want to and are able to.
Preparing for the future
Given that we know dementia in people with a learning disability is likely to progress more rapidly, having support plans in place that address this is a key component of best practice support. Many people with a learning disability will have communication difficulties already, and these will likely be made worse by dementia. Our communication plans are regularly updated, and likewise with PBS plans where these are in place for a person who experiences changed behaviour.
We also aim to capture important information from the person while they are cognitively at their best, so things like life story work and future care planning should never be put off for a ‘better time’. We use the Victoria and Stuart Toolkit that we helped to create to support end of life planning.
It’s important for our teams to have support around key issues like changes in eating, drinking and swallowing, continence and mobility, as all of these often change during a person’s life with dementia. We launched our Dementia Pathway in 2024 to help our staff clearly understand the comprehensive, bespoke support we offer from pre-diagnosis to end-of-life to them to ensure best practice remains at the heart of all we do as a person’s dementia progresses.
Supporting family and friends
It’s often said that a dementia diagnosis isn’t just given to the person but to all who know and love them. For a person with a learning disability, having a friend, relative, workmate or housemate diagnosed with dementia can have a profound effect on their life, leading to worries and concerns they may find difficult to articulate.
Communication with peers and friends to help them understand dementia is key to alleviating anxieties. Vince has Dementia and Books Beyond Words ‘Ann has Dementia’ are two resources that can help peers and friends, as well as the person with dementia, to understand the changes that are happening.
If a person lives with peers, doing environmental work together is vital so that everyone can feel happy with the changes in their home and understand how they can benefit the person with dementia, and likewise for any changes that need to be made in a workplace or lifelong learning service.
For family members of a person diagnosed, our family engagement work gives our families access to tailored support to help them cope with a diagnosis which, because it often involves a younger person, can be very difficult to come to terms with.
Find out more about MacIntyre’s dementia support
We offer Memory Cafes in some of our locations to support social interaction and therapeutic approaches, and our online Dementia Special Interest Group (DSIG) Meetings are free to attend for anyone with a personal or professional interest in dementia. Our next DSIG is on 21 October 2025 and will provide a fantastic learning and sharing platform for attendees. We hope to see you there!
