We have bold ambitions at Alzheimer’s Research UK of a cure for dementia. To achieve our goals, it’s vital that we involve people with lived experience of dementia in shaping our work.
What do we mean when we say lived experience?
We want to meaningfully involve people affected by dementia, who can share their experience of dementia to shape what we do and how we do it.
Lived experience of dementia includes people who have a dementia diagnosis, family and close friends or anyone who supports or cares for someone with dementia.
Lived experience involvement is the active participation and contribution of people in projects or pieces of work, to shape or influence them. It can sometimes be known as patient and public involvement (PPI).
Why get involved?
Involvement helps us to know what is important to people affected by dementia. And in turn, to understand how we can fund research and do work to create real change for everyone affected by dementia.
We believe that to be meaningful, involvement should have benefits both for those affected by dementia and for us as an organisation.
By getting involved, people can influence change by sharing their lived experience. This can be an empowering experience, whilst also helping to develop skills and new knowledge.
You can learn more about contributing on our Lived Experience Involvement Group page.
I thought, yeah, ok, maybe I have said something here that has made them think differently. It made me feel useful.
How to shape our work
Our Lived Experience Involvement Group brings together people with a range of lived experiences of dementia. They use their lived experience to shape projects and work across the charity, doing as much or as little as they would like. Key areas of the charity’s work in which they get involved include:
- Research – sharing insights to review applications and initiatives, inform funding decisions and shape research strategy.
- Health information – reviewing information for accessibility and to ensure it covers key information about dementia.
- Policy and public affairs – sharing experiences to shape work with policymakers, government and healthcare about dementia and research.
There are different ways they share their experience to shape our work, such as:
- Completing surveys and questionnaires
- Taking part in discussion groups
- Reviewing documents and materials
- Joining a working group
- Representing lived experience in meetings and panels
We aim to provide a variety of flexible involvement opportunities, taking into account our volunteer’s health, caring responsibilities and life commitments.
Contact the team
If you have questions about lived experience involvement, please contact the Involvement & Engagement team via involve@alzheimersresearchuk.org