Volunteers who take part in studies are essential to improve understanding of dementia and test potential treatments. Both people with and without dementia can get involved in research.
Currently in the UK it's estimated that nearly one million people are living with dementia. The only way to find new and better ways to treat and care for these people is through research.
What do people think about volunteering for research?
Our Dementia Attitudes Monitor found that half of people surveyed would be willing to take part in dementia research.
In a separate poll, we asked people age 55 and older what might prevent them from taking part in research. The main reasons given were a lack of understanding about what research would involve and not having enough time.
To answer these questions and to support people to get involved we've created information about taking part here.
What are the current guidelines?
The NICE guidelines on Dementia were updated in June 2018 and encourage healthcare professionals to inform patients about research opportunities.
These state that healthcare professionals should ‘tell people living with dementia (at all stages of the condition) about research studies they could participate in.’
How can people get involved in research?
Join Dementia Research is a national service that allows the public to register their interest in taking part in studies across the UK. It is funded by the National Institute for Health Research (NIHR) in partnership with Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland.
Join Dementia Research offers resources to support conversations, including:
- Online tutorial about patient involvement.
- Case studies and engagement materials.
- Free materials, including posters and registration forms.
- An online patient referral for registration.
Dementia Research Infoline
Through our Infoline, Alzheimer’s Research UK helps volunteers to sign up to Join Dementia Research over the phone and by post. We also provide information about taking part, what might be involved and give ongoing support to volunteers registered to Join Dementia Research.
Hours: Monday to Friday 9.00 am – 5.00 pm.
Phone: 0300 111 5 111
Email: infoline@alzheimersresearchuk.org
Getting involved in research
Order this free booklet to offer your patients information about the types of research being conducted, who is eligible, and how they can take part.
