As with dementia generally, there is conflicting information about the prevalence of young onset dementia. The low levels of awareness and the difficulties of diagnosing the condition at working-age mean popularly used statistics are likely to be inaccurate and do not reflect the true number of people who are affected.
About young onset dementia
- Dementia is ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. 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.
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. For the overview report click here.
- The actual figure could be 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.
- 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.
- Prevalence rates for young onset dementia in black and minority ethnic groups are higher than for the population as a whole. People from BAME backgrounds are less likely to receive a diagnosis or support.
- People with a learning disability are at greater risk of developing dementia at a younger age. Studies have shown that one in ten people with a learning disability develop young onset Alzheimer's disease between the age of 50 to 65. The number of people with Down's syndrome who develop Alzheimer's disease is even greater with one in 50 developing the condition aged 30-39, one in ten aged 40-49 and one in three people with Down's syndrome will have Alzheimer's in their 50s. For more information about learning disabilty and young onset, please click here.
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 condtion.
- 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.
John took the first step himself and went to his GP. His doctor told him he needed to use his brain more. John had recently completed his Masters degree!
- Liz, supporting her brother John, with FTD
The impact of dementia for younger people and their families
- Although younger people experience similar symptoms to older people with dementia, the impact on their lives is much greater. 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.
The importance of language
- The language used to talk about younger people with dementia can strongly influence how others treat or view them, and how they feel about themselves.
- For example, referring to people with dementia as ‘sufferers’ or as ‘victims’ implies that they are helpless. This not only strips people of their dignity and self-esteem, it reinforces inaccurate stereotypes and heightens the fear and stigma surrounding dementia.
- Young onset dementia is not necessarily the defining aspect of someone’s identity. They are a person first and should always be described, and treated, as such. Life does not stop when dementia starts.
- Using the correct terms avoids confusion. There are many forms of dementia. Alzheimer’s disease is just one of them and the terms are not interchangeable.
- ‘Young onset’ or ‘working-age’ dementia are preferable terms to ‘early onset’ dementia so as to avoid confusion with the early stages of dementia generally.
The Dementia Engagement & Empowerment Project (DEEP) has published a dementia language guide. 'Dementia words matter: guidelines on language about dementia' has been written in collaboration with people who have dementia. To download this useful and informative guide, please click here.