Young (early) onset dementia

People who develop young onset dementia (also called ‘early onset dementia’ or ‘working life dementia’) – that is, dementia diagnosed before a person is 65 years old – face many challenges. This section discusses key issues for those with young onset dementia, getting a diagnosis, services for younger people and living with young onset dementia.

Key issues concerning young onset dementia

Key issues

A growing number of people diagnosed with dementia are under 65 years of age, although this is still relatively rare: this is known as ‘young onset dementia’ (also called ‘early onset dementia’ or ‘working life dementia’).

Younger people with dementia can experience particular difficulties in obtaining a timely diagnosis and accessing suitable services. Younger people are more likely to experience stigma because dementia is so strongly associated with older age.

diagnosis of young onset dementia

Diagnosis and early stages

Often the early signs of dementia in a younger person are overlooked or mistaken for stress or depression. Getting a diagnosis as soon as possible is important: it can help individuals and families understand what's going on and prepare for the future. Individuals and families will find different ways of adapting to and learning to live with dementia.

Services and support for younger people

Services and support for younger people

The number of specialist dementia services and projects for younger people is increasing. However, provision is patchy and there is still a general lack of age-appropriate support. Younger people with dementia may need input from non-dementia specialist services such as genetic counsellors and substance misuse services.

living with young onset dementia

Living with young onset dementia

Each person's experiences and responses to dementia will be different and are likely to change over time. Find out what kind of support and assistance a person needs: talk to them and their family about what it is they’d like to do or achieve. Physical health is important: encourage regular exercise and remind people to go for their health checks and screenings. Help people find and engage in an activity that is meaningful to them.

Find out more about Dementia


All SCIE resources are free to download, however to access the following download you will need a free MySCIE account:

Available downloads:

  • What the research says: Early onset dementia