Alzheimer’s Society has pioneered the involvement of people affected by dementia in its research programme since 1999. During this time its Network of people with dementia, carers and former carers have been actively involved in all research funded by the Society and has developed over 100 individual research partnerships to ensure that the dementia research community across the UK has access to lived expertise of dementia in the design, delivery and dissemination of their research.
In 2017 Alzheimer’s Society undertook an evaluation of the impact of the Research Network by interviewing and surveying researchers and people affected by dementia about their involvement. Their findings clearly establish that involving people affected by dementia has benefits across all types of research and across four themes:
- Impact on volunteers
- Impact on researchers
- Impact on research
- Impact on Alzheimer’s Society
They now believe this evidence backs up a belief that PPI is not only the ‘right thing to do’ but where done effectively gives a number of benefits. They are now moving the conversation about PPI forward from ‘proving’ why it should be done to ‘improving’ how it can be done in partnership with researchers.
Alzheimer’s Society has published a report which includes a number of quotes from researchers across each of these four themes and a short video which describes the impact.
For more information on this report and how Alzheimer’s Society can help your research click the link below. Remember Matt Murray from the Alzheimer’s Society is also one of our resident experts, on hand to take your questions here.Support from Alzheimer’s Society