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.

Newly released guidelines for health and social care professionals include a recommendation to tell people living with dementia and their carers about research studies they could participate in.

Currently it is estimated that 850,000 people in the UK are living with dementia, and the only way to find new and better ways to treat and care for those affected by the condition is to do more research. But researchers rely on people finding out about suitable studies and volunteering to take part.

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.

Hilary Doxford who was diagnosed with young onset dementia welcomes the new guidance:

“When I was diagnosed, my second question to the clinician I saw was ‘What research is there that I can get involved in?’, and he just looked at me and shrugged his shoulders and said, ‘I don’t know’. This guidance is great news for people with dementia.”

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.

You can read the full NICE guidelines here.


Lady Looking at Join Dementia Research leafletAre you interested in taking part in dementia studies? Not yet registered with Join Dementia Research? Sign up today to keep up to date with the latest studies you can take part in.