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Taking part in a steering group for a non-pharmacological intervention clinical trial Taking part in a steering group for a non-pharmacological intervention clinical trial

2006 Conference

The Alzheimer’s Society funds research through the Quality Research in Dementia programme (QRD) which, through the QRD Consumer Network, involves consumers in all stages of the selection and administration of the funded research. A proposal to address management of challenging behaviour in care homes for people with dementia was selected by QRD in 2002 and subsequently funded by The Big Lottery Fund.

Three QRD consumer network members joined the project steering group. Our experience:

  • The researchers were just as nervous of us as we were of them, but we soon developed a working relationship based on mutual trust
  • We felt we had a real input to the discussions
  • Although we each had experience from having people we cared for in homes, we were still surprised by some of the events related to us during the meetings and moved by some of the case stories
  • We feel we have been part of a project that has the potential to change lives for the better in care homes.

Authors

Barber ~ Brenda

The presenters are members of the QRD consumer network and all are either carers or former carers of people with dementia. As members of the network they take part in assessing grant applications and, as presented in this poster, they all have experience of being lay members on a research project steering group.

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Woodward-Carlton ~ Barbara

Research Network Volunteer, Alzheimer's Society. Barbara Woodward-Carlton cared for her mother who had Alzheimer's disease. A member of the Research Network since its inception, she has been involved in patient and public involvement (PPI) work both with that group and others and firmly believes that those affected by dementia have a vital role to play in research into its cause, cure, care and prevention. She has been involved in dementia research projects as a co-applicant and a member of steering groups funded by the National Institute for Health Research (NIHR).

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