Young onset dementia: guidance for dementia support roles

Supporting people and families affected by young onset dementia (where symptoms develop before the age of 65) presents unique challenges compared to older individuals.

Due to the person’s younger age, there may be different issues to consider such as work, finances and dependent children. Supporting them can be more emotionally intense and complex, requiring greater advisor involvement and adaptability.

Often people in dementia support roles have little or no experience of supporting younger people through these challenges. The Young Dementia Network has created this guidance to help professionals such as dementia support workers, dementia advisors and key workers, but it can be used by anyone seeking information and advice.

The leaflet is intended to be used as a tool to help steer a discussion with a person with young onset dementia and their family members and can be used as a prompt to offer further information and support. The guidance is divided up into topics that can be discussed at a time that is right for the person and their family, and adapted to their needs and circumstances.

Originally created in 2019, the guidance has been updated with the generous support of Dementia Forward and Younger People With Dementia CIO.

Useful websites and resources 

A list of useful resources can be found at the end of the leaflet.

The Dementia UK website has young onset dementia information and advice leaflets that you may find useful. 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.

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