Peer support for people with Young Onset Dementia in the East Midlands

Why the research is needed? 

Research shows that availability and accessibility of specialised care and support services for people with Young Onset Dementia (YOD) varies widely across the UK. This includes peer support groups.

What is already known about the subject? 

Peer support can be very valuable for people with Young Onset Dementia (YOD). It provides opportunities for social support and connection, and sharing experiences, hints and tips. Research shows that people with YOD view their peer support group as their lifeline. Through peer support people have build new friendships, got practical hints and tips that supported them in coping with dementia-related challenges in daily life, and it gave them feelings of hope and purpose again that it is possible to live well with dementia.

Who we are working with? 

We will work with people with YOD and their families, health and social care professionals, dementia organisations, and academic experts.

How are patients and the public involved? 

People with YOD and their families will be involved through informal consultations and focus groups.

What we will do? 

Grey literature review

We aim to create an overview of existing peer support services for people with dementia and identify groups and services that are specifically for people with YOD. There is very little literature (academic and grey) on peer support groups for people with dementia, which is why we will conduct a systematic search on Google (see here for an example) and a content analysis of dementia organisations’ websites (see here for an example).

Focus groups

We will speak with people with YOD and their families, health and social care professionals, and dementia organisations (e.g. Alzheimer Society, Dementia UK) to learn which peer support services (online and in-person) are currently available in the East Midlands, and whether there are any gaps or unmet needs.

What the benefits will be? 

The findings of this project will provide insights into what is available in terms of peer support in the East Midlands for people with YOD, and it will also shed light on where there is still room for improvement and what the unmet needs are. These findings will inform directions for future research to improve peer support for people with YOD. By working together with people with YOD and their families, health and social care professionals, and dementia organisations we can ensure that future research addresses the needs of all of those involved.

When the findings will be available? 

December 2024

Contact

Esther Gerritzen, research associate, University of Nottingham, Esther.Gerritzen@nottingham.ac.uk.