Young Onset Dementia Guidance

Young Onset Dementia Guidance

This guidance is primarily for Dementia Support Workers / Dementia Advisors / Key workers who may not usually support an individual under the age of 65 years old affected by dementia.  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 developed and designed by people affected by young onset dementia in DEEP groups and the Young Dementia Network.

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. 

Please feel free to download the guidance document here or if you would like us to post you a copy, click here.

Useful websites and resources for professionals 

The YoungDementia UK website lists a number of young onset specific resources such as films, blogs and books that you may find useful here.

The Young Dementia Network Clinic Leaflet which contains details of dementia organisations that can provide support and information can be found here.

Dementia UK has a national helpline 0800 888 6678.

Rare Dementia Support has created an information pack for professionals about rare dementias. You can download it here.

The Angela Project is a three-year long national research project that has looked at diagnosis and post-diagnostic support for people affected by young onset dementia.  Their findings and guidance will be published towards the end of 2019. 

We would love to hear your feedback on this resource.  You can fill in a survey here that takes about four minutes to complete. 

  This guidance was created in collaboration with DEEP groups in Derby and Oxford and was funded by a DEEP grant. 


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