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   

 Time lived with young onset dementia  

People diagnosed with dementia under the age of 65 who live beyond 65 years still need to be counted but often ‘drop off ’ dementia statistics. They need to continue to be identified as ‘young onset’ because they continue to have specific needs due to their stage of life at diagnosis and because they may have a rarer form of 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 

For more information about diagnosis and prevalence visit the research section of our website.

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   

Lack of post-diagnostic support

The Angela Project, the largest study of young onset dementia ever carried out in the UK looked at how diagnosis and post-diagnostic support for people living with young onset dementia could be improved. Its findings showed that:

• 42% of people received no follow-up in the first six weeks after diagnosis
• 60% of those diagnosed in neurology services received no follow-up in the first six weeks
• 16% had no one managing their ongoing care
• 20% had ongoing management from young onset dementia specialists
• Nearly 60% of family carers provided support for five hours or more every day
• Nearly 70% of carers had no service that allowed them to take a break

Care and support plans for people affected by young onset dementia  

People with young onset dementia need:

• young onset dementia specific advice, information and support to remain independent 
• supported age-appropriate activity and occupation to maintain sense of identity  
• support to maintain their physical and mental health as well as possible  

People with young onset dementia and family carers need to maintain a sense of connection with others through:

• social engagement in age-appropriate forums  
• activities  
• relationships with family  
• contributing to wider society  

Family carers need:

• specialist support to understand how to care for their relative with issues specific to young onset dementia  
• support to retain aspects of life beyond caring, such as employment 

Service design and development

To develop good services for people with young onset dementia, service providers and commissioners should:

• adopt a specific strategy for young onset dementia built on partnership working  
• work in partnership with people living with young onset dementia, their family members and local champions to deliver the strategy  
• build capacity and ownership of young onset dementia services within, and between, organisations  
• provide specialist or shared care, rather than care from a GP alone  
• offer ongoing case management from a specialist young onset dementia service  
• provide a clear contact to the person and their family for when they need support 

See our Young onset dementia pathway for more detailed information. It sets out recommendations which are designed to guide policy makers, commissioners, practitioners in designing and delivering services.

Useful resources  

• The Angela Project: Good practice in young onset dementia
• Dementia UK : 70,800 adults are affected by young onset dementia 
• Alzheimer’s Research UK: Dementia Statistics Hub