Young onset dementia facts and figures

Gaining an accurate understanding of how many people are affected by young onset dementia is challenging for a number of reasons including:  

• symptoms of young onset dementia are often not recognised and are misdiagnosed 
• the route to diagnosis may be confused due to lack of specific expertise and assessment tools 
• the recording and reporting of young onset dementia needs improvement 

Although improvements are underway, the numbers of people with young onset dementia are likely to be an underestimate. 

Young onset dementia diagnosis rate in England 

• The target diagnosis rate is 66.7% for people over the age of 65 living with dementia
• People under the age of 65 are not included in the diagnosis rate target or reporting 
• The diagnosis rate for people under the age of 65 with dementia is estimated to be around 55% indicating a significant variation to the over 65 years target 
• The estimated diagnosis rates in different areas of England indicate significant variation between the lowest and highest rates

Prevalence of young onset dementia   

• Over 70,000 people are living with young onset dementia in the UK where symptoms began under the age of 65 – this is 7.5% of the UK population who live with dementia
• Prevalence breakdown for UK nations: about 60,000 people in England are living with young onset dementia; 5300 in Scotland, 3,700 in Wales and 1,800 in Northern Ireland  
• There are estimated to be 92 people per 100,000 of the population diagnosed with dementia between age 30-64  
• NHS England report the number of people diagnosed under the age of 65 irrespective of their current age 
• Some minority ethnic communities have a higher prevalence rate than the population as a whole 
• People with a learning disability are at greater risk of young onset dementia. One in ten may develop Alzheimer’s disease between the age of 50 to 65. The number of people with Down’s syndrome who develop Alzheimer’s disease is greater with around 50% developing symptoms in their 50 to 60s   

 Length of time living with dementia  

• 55% of people living with dementia who are currently aged between 65-69 were diagnosed under the age of 65 
• 25% of the people in this age group, have lived with dementia in excess of five years and 5% in excess of 12 years 

Common types of dementia in younger people   

The types of dementia commonly diagnosed in younger people with dementia are different to older people.   

• Alzheimer’s disease is the most common form of dementia in younger people, affecting about a third of younger people with dementia compared to about 60% in the older people 
• Vascular dementia is the second most common form of dementia, affecting about 20% of younger people with dementia.  
• Frontotemporal dementia affects about 12% of younger people with dementia, compared with 2% in older people. It often occurs between the ages of 45-65. In about 40% of cases there is a family history of the condition  
• Alcohol related dementia – around 10% of dementias in younger people are caused by a lack of vitamin B1 (thiamine), most commonly associated with alcohol abuse  
• Lewy body dementia affects around 10% of younger people with dementia 
• Rarer types – around 20% of younger people with dementia have a ‘rarer’ type such as conditions that can lead to dementia including Parkinson’s, Huntington’s disease and Creutzfeld Jakob disease  
• Familial types of dementia caused by genetic mutations occur more often in younger people. These include: familial Alzheimer’s disease, familial frontotemporal dementia and familial vascular dementia   

Useful resources  

• Dementia UK news: 70,800 adults are affected by young onset dementia 
• Alzheimer’s Research UK – Dementia Statistics Hub