Research and evidence
A collection of research focusing on the most prominent subjects relating to young onset dementia, gathered by members of the Young Dementia Network Steering Group and other experienced researchers.
Take part in research
Research into dementia is receiving more investment as people search for treatments or a cure. You may be asked to, or want to take part in medical or social research, and there are a number of ways you can become involved. You might want to take part in a drug trial, review research proposals or take part in cognitive tests.
Before you decide whether or not to get involved, try to make sure you understand what it will involve. You should never be put under any pressure to take part, however people often find that the knowledge that research may benefit others now, or in the future with dementia, helps them personally.
Where to find information
Alzheimer’s Research UK
Find out about their current research projects on their website.
Alzheimer’s Society – Research Network
Volunteers all have personal experience of dementia – living with the condition or as a family member or carer. They work in partnership with the Society and researchers to ensure that research is relevant, credible and has an impact for everyone affected by dementia. Anyone with personal experience of dementia can volunteer. No scientific knowledge or research experience is needed. Find out more on their website.
National Institute for Health Research
The NIHR is funded by the Department of Health. It is looking for people with personal experience of dementia to help review research proposals and has launched a ‘Join dementia research’ campaign, see link below.
DeNDRon
The Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) supports the development and delivery of clinical research into dementias, as well as other neurodegenerative diseases, including those that affect younger people with dementia.
Join Dementia Research
For people with or without dementia to register interest in participating as a volunteer in dementia research. To find out more click here
NHS Research Scotland – Neuroprogressive & Dementia
You can register your interest in taking part in research via their website.
Northern Ireland Clinical Research Network
You can download a leaflet from their website to find out how to get involved in research.
Donating your brain
Studying brain tissue improves scientists’ understanding of dementia, how it starts and how it progresses. It can help to develop new treatments. You obviously cannot donate your brain until you die but you can start the process now. Researchers want healthy brains as well so you can make a valuable contribution whether you have dementia or not. Find out more from the Human Tissue Authority.
Simple guide to research
An introductory guide to help you find and understand research on young onset dementia.
Share young onset dementia research
Do you know of a young onset dementia research study for inclusion in our collection?