The changes we are asking for 

Care and support for people affected by young onset dementia   

In the UK very few people with young onset dementia and their families experience a high standard of diagnosis and support throughout their lives. Very few, as the condition progresses, can rely on care that works well for them and their family at home and if an alternative is needed, appropriate care homes are very scarce. 

There is unfair variation in the provision of services for people with young onset dementia which needs to be challenged.  People with young onset dementia need:

• young onset dementia specific advice, information and support to remain independent 
• supported tailored 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, including children 
• 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 for people with young onset dementia

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 

What we are asking for  

• Increase the dementia diagnosis rate for all those under 65 and include the type of dementia
• Every person with suspected young onset dementia should have access to a Young Onset Dementia Service or Pathway to provide timely and accurate diagnosis, immediate post-diagnostic support and a coordinated support plan. The Young Dementia Network has collaborated with Dementia UK and an expert advisory group to create a framework for change to improve support for younger people
• People with suspected young onset dementia should have access to a clinician with young onset dementia expertise in their local area 
• All local dementia service planners and providers should establish Lived Experience Forums to ensure those affected help design appropriate services