Delays in Alzheimers diagnosis for people with learning disabilities

By Amanda Wilkins - 19 March 2024

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Alzheimers Society says getting a diagnosis of dementia can take longer for people with learning disabilities in the South West.

People living with a learning disability are more likely to get dementia at a younger age, but getting a diagnosis of dementia can take longer, according to research by specialist charity Alzheimer’s Society.

Around one in five people with learning disabilities who are over the age of 65 will develop dementia. While those with Down’s syndrome have an even higher risk, with about two in three people over the age of 60 developing dementia, usually Alzheimer’s.

This World Down’s Syndrome Day - 21 March - Alzheimer’s Society is sharing tips to help recognise signs and symptoms.

Angelo Makri, Senior Knowledge Officer for Wellbeing at Alzheimer’s Society said: “You are likely to know the person that you care for best, which makes you well-placed to recognise subtle changes. This could include acting out of character or taking more time 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.”

Alzheimer’s Society has produced a free symptoms checklist, endorsed by the Royal College of GPs, to help people talk to their health professional to get a vital diagnosis. Symptoms include:

•    Changes in behaviour and personality.

•    Confusion or memory problems, including changes in mood.

•    Memory loss, asking the same question over and over or repeating phrases.

•    Epilepsy or fits; if a person with Down’s syndrome in later life begins to have fits, or experiences them more than usual, this could be a sign of dementia.

Angelo Makri said: “A timely and accurate diagnosis is crucial to access treatment and support that can help people manage dementia symptoms and avoid ending up in crisis.

“If you or your loved one are worried about experiencing dementia symptoms, you should visit your GP. They will try to assess what’s likely to be causing the problem.”

Alzheimer’s Society is here for everyone affected by dementia. They provide accessible publications designed for people with learning disabilities which are available in Easy Read.

People can call their Dementia Support Line on 0333 150 3456 or visit alzheimers.org.uk for help and advice.

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