Young onset dementia update

A recently completed study on young onset dementia highlighted that the involvement of younger people in service design has very practical benefits.  One group of younger people with dementia and their family caregivers worked together with a local charity to discuss the design of a service that would enable them to meet other people in similar situations in their community.  Data protection prohibits charities from divulging the names of their clients, but they can, with the consent of families involved, introduce them to each other. This enables families in similar situations to support each other and potentially reduces the demand for over-stretched community-based services.  This also fosters a sense of social inclusion and social connectedness and facilitates friendships between teenage children who find themselves in similar situations.

Our paper demonstrates how young people with dementia can work with local charities to co-design new approaches to dementia care in their community. Ideas around co-design and co-production are not new, but they seem to receive increasing attention across health and social care. This is supported by institutions such as the National Institute of Health Research (NIHR) and the Collaboration of Leadership in Allied Health Research and Care (CLAHRC). More evidence of co-produced services needs to be generated, and findings need to be implemented more widely to support social care and third sector organisations to plan and deliver care that meets a felt need and that is locally sustainable.

We gratefully acknowledge the funding received for this study from the NIHR CLAHRC East of England and co-funding from the NIHR CLAHRCYorkshire and Humber

This paper can be accessed via