What is Young Onset Alzheimer's disease and dementia?

Many people are shocked to discover that young people can get Alzheimer's or other forms of dementia. Find out about the different types of dementia which affect people under the age of 65

In a nutshell

Dementia mainly affects older people, but it can occasionally affect those under 65. Although very distressing and difficult to accept, most people with young onset dementia find that a diagnosis can make life easier in the long term because it means they can begin to access the right treatment and support.

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Three names

Young onset dementia is also known as early onset or ‘working age’ onset because those affected are often still in employment, rather than retired.

Three facts worth knowing

1. Of the 850,000 people in the UK currently living with dementia, only around 5 per cent are under 65.

2. One third of those with young onset dementia have Alzheimer’s, and around 20 per cent have vascular dementia. A further 20 per cent have a rarer form, such as one associated with Parkinson’s disease or Huntington’s disease.

3. One in 10 people with a learning disability develop young onset Alzheimer’s.

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What actually happens

This largely depends on which form of dementia a young person has, but symptoms usually begin with memory loss, difficulty concentrating on simple tasks they used to find easy (such as following a recipe or paying a bill), problems with driving or joining in a conversation. But because dementia is so rare in younger people, it’s often mistaken for something else at first, such as stress or depression. GPs often don’t feel confident about make a diagnosis themselves and may refer you to a specialist for tests and assessments.

Here’s the science

We still don’t know why young people get dementia, though young onset Alzheimer’s does seem to run in families and have a genetic link. Scientists believe that a genetic mutation in one of three genes the APP, PSEN 1 or PSEN 2 may mean you are at a higher risk of developing Alzheimer’s before the age of 65.

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Good to know

Although it may seem a scary prospect, diagnosis could actually take away a lot of stress and uncertainty and allow you to get the right treatment and support, whilst taking control of your own future. You could also get on a clinical trial.

Life doesn’t stop when dementia starts. Many younger people continue to work after they’ve been diagnosed and remain a vibrant, essential part of their family and community.