DETERMIND carer and user reference group

Author: Natalie Tawney

We recently had our first DETERMIND Seldom Heard Groups user and carer reference group meeting. This group have lived experience of dementia, either their own, or by supporting a loved one with dementia. Our aim is to ensure the project stays grounded to what’s important to people affected by dementia from underserved groups.

It was brilliant to meet people so passionate about addressing inequalities and advocating for better dementia care for their communities. Our programme manager, Ben Hicks, gave us an overview of DETERMIND so far and the motivation for the Seldom Heard Groups sub-study. Group members shared their experiences and motivations for wanting to get involved in DETERMIND, and discussed the importance of communities shaping research.

We are looking to expand our user and carer reference groups and would love to hear from people who are keen to help improve the dementia care pathway and ensure it is equal for everyone. If you have been diagnosed with dementia, or care for someone who has, and are from an underserved ethnic or religious community and/or identify as LGBTQIA+, please get in touch! No prior research involvement experience is needed.

If you are interested in finding out more or have any questions, please contact Natalie at natalie.tawney@kcl.ac.uk or by calling 07720032372.

Two handprints made in orange paint making a heart shape. In the middle of them is a heart painted in red paint.