Young onset dementia: guidance for dementia support roles

This guidance is primarily for dementia advisors, support workers and key workers who may not usually support people living with dementia under the age of 65 years old.

It is intended to guide discussion with the person with dementia and their families and should be used flexibly to adapt to individual needs and circumstances.

This guidance was originally created by the Young Dementia Network in 2019 in collaboration with two young onset dementia peer support groups, both part of the DEEP network and was funded by a DEEP grant. It was updated in 2022.

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It is intended to be used as a prompt to aid the support that workers offer but is not intended to tell people what is needed. People affected by young onset dementia should have the opportunity to feel empowered by the prompts on this guidance and it should be utilised in a versatile way with the individual.

Useful websites and resources

The Dementia UK website has young onset dementia information and advice leaflets that you may find useful, click here. Professionals are welcome to call the Dementia UK Admiral Nurse Helpline on 0800 888 6678.

The Young Dementia Network Diagnostic clinic leaflet contains details of dementia organisations that can provide support and information, click here.

Rare Dementia Support offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis. Visit their website here.