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
In 2014, it was estimated that there were 42,325 people in the UK with a diagnosis of young onset dementia. They represent around 5% of the 900,000 people living with dementia
The actual figure is likely to be higher because of the difficulties of diagnosing the condition and might be closer to 6-9% of all people living with 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 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 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
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
Dementia UK – Learning disability and dementia – click here.
Alzheimer’s Research UK – Dementia Statistics Hub – click here.
Dementia Engagement and Empowerment Project (DEEP) ‘Dementia words matter: guidelines on language about dementia’. Download here.
What is young onset dementia?
An explanation of the differences between young onset versus late onset dementia