What is needed?

Consulting with Younger People with Dementia and their Families


From August 2013 to March 2014, consultation with younger people living with dementia and their families took place via a number of meetings and individual appointments. A report was produced to summarise the perspectives of the people who contributed and highlight their perspectives on what was needed in order that they can live well with dementia. This report can be accessed below:

Final Version Accessible Summary Living Well With Young Onset Dementia

Young Onset Dementia Consultation Report

Final Version Young Onset Dementia Consultation Report

Accessible Summary Living Well With Young Onset Dementia

At the same time as these consultations were occurring, the views of staff who work with younger people with dementia and their families were also sought, and these perspectives were combined to produce a road map which outlines what people feel they need throughout their experience of living with dementia. Furthermore, a traffic light system was used to illustrate areas of development needed as follows:

Green: working well
Amber: services exist but need further development to respond to the needs of younger people with dementia and their families
Red: services either do not exist or need considerable adaptation

The road map can be found here:

Road map

This work culminated in a Planning Event held at the University of Worcester Arena, on the 9th of April 2014. This event sought to bring younger people with dementia, their families and professionals and service providers together to discuss the needs identified through consultation and identify the priorities for the next few years. The report from this event can be found here;

Final Report Living Well with Dementia at a Younger Age Planning Meeting 9th April 2014

Following this planning meeting, 5 working groups have been set up to address the six priority areas identified.

On the 24th of September we held a meeting to review our progress on the priorities set in April 2014. Around 60 people attended the meeting, including people living with young onset dementia and their families. A report was produced from this meeting which you can find below. If you would like to find out more or get involved in helping us to develop services and support, please contact us.

Final Report