Volunteers changing research for the better

People affected by dementia can make a unique and valuable contribution in every stage of research. Alzheimer’s Society has championed the active involvement of people affected by dementia in research for nearly two decades through it’s Research Network , helping to ensure it funds the highest quality, relevant research on dementia.

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. The 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

A report has been published which includes a number of quotes from researchers across each of these four themes and a short video which describes impact.

Full report: ‘We can make our research meaningful’. The impact of the Alzheimer’s Society Research Network


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