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Young onset dementia: facts and figures

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. The facts and figures stated below relate to the UK.

Prevalence of young onset dementia

  • An estimated 7.5% or 70,800 of the estimated 944,000 people living with dementia in the UK are living with young onset dementia where symptoms occurred under the age of 65
  • The estimated prevalence figure for young onset dementia, where diagnosis was between age 30—64, is 92 per 100,000 of the general population
  • 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 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

Diagnosis of young onset dementia

  • On average, a person may see between two and five different consultants before a diagnosis is made
  • The average time to diagnosis is 4.4 years in younger people compared to 2.2 years for people aged over 65
  • In England in August 2018, the estimated dementia diagnosis rate for under 65s was 41%, compared to 68% for people aged over 65
  • Awareness amongst GPs is still relatively low and when people are younger, symptoms are often attributed to stress, anxiety, depression or menopause
  • People who are under 65 are more likely to be diagnosed with a genetically inherited form of dementia or a rarer dementia that can be difficult to recognise

Common types of dementia in younger people

There are differences in the types of dementia commonly diagnosed in younger people with dementia compared to those of an older age.

  • Alzheimer’s disease is the most common form of dementia in younger people, accounting for around a third of younger people with dementia, in comparison to about 60% in the older age group
  • Vascular dementia is the second most common form of dementia in young people. Around 20% of younger people with dementia have vascular dementia
  • Around 12% of younger people with dementia have frontotemporal dementia, compared with just 2% in older people. 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 younger people are caused by a lack of vitamin B1 (thiamine), most commonly associated with alcohol abuse
  • Around 10% of younger 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, Huntington’s disease and Creutzfeld Jakob disease
  • Younger people are more likely to have rarer familial forms of dementia caused by genetic mutations including: familial Alzheimer’s disease, familial frontotemporal dementia and familial vascular dementia

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 likely to be 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 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 dementia is a preferable term to ‘early onset’ dementia so as to avoid confusion with the early stages of dementia generally

Useful resources