Dementia is not a normal part of getting older. It’s caused by illnesses that affect the brain, including the areas that control memory and thinking. These changes can develop gradually over time.

There are currently no treatments available on the NHS that can slow down, stop or prevent the condition. However, there are now more potential treatments being tested than ever before. There is also more investment and an increased focus on diverse populations and lifestyle factors.

Dementia research helps us learn more about how dementia is diagnosed, treated, and supported. People choose to take part for many different reasons. Here are 5 reasons to get involved.

Hope for the future

Taking part in research is the best way to find better treatments for dementia. It can also help prevent the condition from progressing.  This sense of hope is what inspires many people to take part in dementia research studies. Like Mary, who took part in research after her mother’s dementia diagnosis. She got involved in a project aimed at identifying blood biomarkers of Alzheimer’s disease.  She said: “The most important thing to say about research is that prevention is better than cure.”

To support scientific advancement – and access the newest treatments

Interventional studies test new treatments, while observational studies can monitor things like lifestyle and symptoms. Every study adds valuable information to our understanding of the brain and dementia. One study, PROTECT, looks at how healthy brains age and requires participants without dementia. Another study is  using music therapy to improve care and reduce distress for people living with dementia.. Many people find that taking part in a research study is an interesting and rewarding experience. It gives them access to new information. They may also be able to test new devices to  improve their symptoms and quality of life.

To take an active role in their own health

For those living with dementia, engaging in research can be a positive and empowering action in the face of a challenging diagnosis. Participating in research offers a sense of purpose and control. It can support participants in managing their condition and help them learn more about their health. “When I got the diagnosis, I had a feeling of relief,” says John Hyde, who was diagnosed with frontotemporal dementia aged 59. “I could finally plan what I was going to do about it. I wanted to learn more about what was affecting my brain and after finding out about Join Dementia Research, I knew I wanted to sign up straight away. By doing research and medical studies through the Join Dementia Research website, I started to get my purpose back.”

To help shape care, and policy

Taking part in dementia research isn’t just about clinical trials. It also includes surveys, focus groups, and studies that follow people over time to improve care, support, and quality of life for those living with dementia and their carers. Your experiences can help shape better services and policies.

To benefit from a supportive community

Some volunteers find a sense of community and support as part of a research study. They often receive increased interaction with healthcare professionals and close monitoring of their health throughout the study. They may also have the opportunity to meet and share experiences with other participants. “From the beginning, I felt part of a team, you’re not just a subject, you’re part of something really important,” said Stephen, a retired social worker from Merseyside. “I feel quite pleased and proud to be part of it.” 

Take part in research

Could you take part in dementia research? Log in to your Join Dementia Research account to check whether you have been invited to take part in a study. Or, if you are not already registered, sign up today.