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
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 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
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
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.
Download
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
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Useful links Open
Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including What is young-onset dementia (440), Explaining dementia to children and young people (515) and Rarer causes of dementia (442). It has also published a position statement on What is young-onset dementia?, maintains a database of services for younger people with dementia, and has a forum within its online community, Talking Point (for people with dementia and their carers), specifically for younger people with dementia.Rare Dementia Support
Rare Dementia Support is a specialist support service for people living with or affected by one of five rare dementia diagnoses: familial Alzheimer’s disease, frontotemporal dementia, familial frontotemporal dementia, posterior cortical atrophy (PCA) and primary progressive aphasia (PPA). The service offers support group meetings, telephone contact networks, websites and access to information and advice and is based at the Dementia Research Centre at UCL’s Institute of Neurology. It was previously known as the Fronto-temporal Dementia Support Group.FTD talk
The aim of this website from scientists at University College London is to make frontotemporal dementia (FTD) easy to understand for anyone with an interest in FTD. The site includes a dozen factsheets related to various aspects of FTD, available to download for free.YoungDementia UK
This Oxford-based service offers care and support for younger people with dementia and their families. It was begun by Helen Beaumont whose husband Clive had young onset dementia. The YoungDementia UK website has information on young onset dementia.Younger people with dementia: living well with your diagnosis
This resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers. It covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information. The resource was first published in 2013 and revised in 2017.
