Dementias: New NICE guidelines recommend telling people about dementia research opportunities

All people with dementia should be provided with information on research studies they could participate in, according to new guidelines on best practice released by NICE.

Professor John O’Brien, NIHR Specialty Lead for Dementia, was a member of the NICE Development Group that helped formulate the newly released guidelines for health and social care professionals – which include a recommendation to tell people living with dementia and their carers about research studies they could participate in.

The new recommendation from the National Institute for Health and Care Excellence (NICE), makes clear that health and care professionals should help people living with dementia and their carers find out about opportunities to take part in research, and empower them to make their own decisions about getting involved. One straightforward way to do this is to provide information about Join Dementia Research.

The National Institute for Health Research (NIHR), was one of a number of organisations to provide feedback on the guidelines. The NIHR works in partnership to deliver Join Dementia Research, a UK-wide service that enables people with dementia and their carers to register their interest in research. It allows registered volunteers to be matched with the most appropriate studies, with no obligation. Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia and their carers.

Professor John O’Brien said: “These new NICE guidelines, covering both Health and Social Care, represent expert guidance based on the best evidence based care for people with dementia. They represent a major advance over the current guidelines, and should improve the diagnosis, management and care of all those with dementia.”

You can read the full NICE guidelines here.