Dementia is considered ‘young onset’ when it affects people under 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia.
Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember. Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique, and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.
Dementias that affect younger people can be rare and difficult to recognise. People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.
People with young onset dementia are more likely to be diagnosed with rarer forms of dementia and are more likely to have a genetically inherited form of dementia.
The impact for younger people and their families
Although younger people experience similar symptoms to older people with dementia, the impact on their lives is significantly different. Younger people are more likely to still be working when they are diagnosed. Many will have significant financial commitments such as a mortgage. They often have children to care for and dependent parents too. Their lives tend to be more active, and they have hopes, dreams and ambitions to fulfil, up to and beyond their retirement.
Prevalence of young onset dementia in the UK
It is estimated that there are 42,325 people in the UK who have been diagnosed with young onset dementia. (Ref Dementia UK, 2nd edition 2014, Alzheimer’s Society). They represent around 5% of the 850,000 people with dementia.
The actual figure is likely to be much higher because of the difficulties of diagnosing the condition and might be closer to 6-9% of all people with dementia. Awareness amongst GPs is still relatively low and when people are still at work, symptoms are often attributed to stress or depression.
Prevalence rates for young onset dementia in black and minority ethnic groups are higher than for the population as a whole. People with a learning disability are also at greater risk of developing dementia at a younger age.
Common types of dementia in younger people
Alzheimer’s disease is the most common form of dementia in younger people, accounting for around a third of young people with dementia.
Vascular dementia is the second most common form of dementia in young people. Around 20% of young people with dementia have vascular dementia.
Around 12% of young people with dementia have frontotemporal dementia. It most commonly occurs between the ages of 45-65. In about 40% of cases there is a family history of the condition.
Korsakoff’s syndrome – around 10% of dementias in young people are caused by a lack of vitamin B1 (thiamine), most commonly associated with alcohol abuse.
Around 10% of young people with dementia have dementia with Lewy bodies.
Around 20% of young people with dementia have a ‘rarer’ form of the condition. Examples include conditions that can lead to dementia including Parkinson’s disease, Huntington’s disease and Creutzfeld Jakob disease.
Please note the Young Dementia Network does not provide young onset dementia support. For more information about young onset dementia and to search for support where you live visit.
About the Network
The Young Dementia Network is a community of people living with young onset dementia, their family and friends, as well as organisations and professionals who work in the fields of dementia and social care
Our monthly webinars bring together Young Dementia Network members, people living with young onset dementia, family members, professionals and people interested in young onset dementia to create an opportunity to connect, support and inform each other