Learning disabilities and dementia

People with learning disabilities, particularly those with Down's syndrome, are at increased risk of developing dementia. If a person with a learning disability develops dementia, they will face different and additional challenges to people who do not have a learning disability.

People with learning disabilities are now living longer, thanks to better medicine, care, and support in the community. This means that, if the person you care for has a learning disability, they are more likely to live to an age where they may develop dementia.

Getting a diagnosis of dementia can take longer and be more difficult for many people with learning disabilities. This makes it more important for those who know them well to be able to recognise the symptoms.

If you care for a person with a learning disability, you likely know the most appropriate ways to support them. When a person with a learning disability develops dementia, they will have new
needs that have to be met.

Just as every person with a learning disability is different, so is every person with dementia. With the right care and support, it’s possible for you and the person you care for to live well with dementia.

How does dementia affect people
with learning disabilities?

People with a learning disability are more likely to get dementia at a younger age. About 1 in 5 people with learning disabilities who are over the age of 65 will develop dementia. People with Down’s syndrome have an even higher risk, with about 2 in 3 people over the age of 60 developing dementia, usually Alzheimer’s disease.

People with learning disabilities may find that their dementia gets worse more quickly than someone without a learning disability. This can be due to delays in getting a diagnosis because, by the time their condition is diagnosed, the person’s symptoms have worsened. They are also more likely to have existing health conditions that aren’t well-managed. This makes it even more important to get the right care and support.

What are the symptoms of dementia in someone with a learning disability?

Knowing which symptoms to be aware of can help the person get the appropriate assessments as early as possible. There are early signs you can look out for, including:

• changes in their daily living skills
• differences in the way they approach daily tasks
• changes to their memory, reasoning or language.

You are likely to know the person that you care for best, which makes you well-placed to recognise subtle changes. This could include changes in their mood or the time it takes them to carry out certain tasks. Any changes that you, or the person’s other carers, family or friends notice, can play an important part in helping to spot the early signs of dementia.

If you notice ongoing changes rather than a one-off, tell the GP or learning disability team as soon as possible. They can arrange for the person to have an assessment designed to identify dementia in people with learning disabilities.

These changes can all be caused by other conditions, so it doesn’t necessarily mean that the person you care for has dementia. However, all changes should be investigated by the GP or learning disability team.

For someone with a mild learning disability, dementia may appear and progress in a similar way as someone who doesn’t have a learning disability.

Some common early signs of dementia to look out for are: 

• memory loss
• confusion
• problems with language and understanding 
• changes in behaviour

If the person already has difficulty with some of these, look for any changes in their abilities.

For people with more complex or profound learning disabilities, the initial symptoms are likely to be less obvious or ones that are not usually associated with dementia. For example, the early symptoms may involve changes in personality and mood, difficulties in making decisions, or changes in daily living skills. This can make diagnosing dementia more difficult.

How do symptoms of dementia progress in someone with a learning disability?

The changes you notice in the person you care for may be small to start with, but they will become more noticeable. How quickly this happens varies greatly from person to person.

As dementia progresses, the person may act in ways that seem out of character. This may include asking the same question over and over, pacing, and becoming restless or agitated. In the later stages of dementia, the person may have physical symptoms, such as muscle weakness or weight loss, or changes in their sleep pattern and appetite.

It is recommended that every adult with Down's syndrome is assessed by the time they are 30 to provide a record or 'baseline' with which future assessments can be compared.