Every year we ask our Join Dementia Research volunteers to tell us about their experiences of the service via a questionnaire. This helps us to understand what we are doing well and enables us to identify areas for improvement.


You may have noticed some changes to the survey this year; we reduced the number of questions and provided more opportunities for written responses, in addition to the multiple choice options. As a result, the number of responses doubled! So thanks to all of those who took the time to respond, your feedback is highly valued.

We were really pleased to see that the percentage of people who would describe their experience of Join Dementia Research as excellent, good or ok, is now 90%, this compares to 87% in 2020.

In a new question for this year, we asked about your motivation for signing up. Of those who responded, 34% said they wanted to help future generations, 19% said they were worried about dementia risk and 18% said they had a loved one with dementia.

The number of respondents who have taken part in a study has increased to 71%, compared to 65% last year.

What you said

The comments boxes provided some interesting feedback for us. There were a number of suggestions for improvements to the website including making it easier to navigate and more user friendly. Some of which have hopefully been addressed in our updates to the volunteer profile updates, but others we are continuing to work on.

Some of you asked for more information and advice about dementia including symptoms, treatments and information for carers. This kind of information is available from our charity partners, so we’d encourage you to visit Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland.

There were many other suggestions and comments, which we have taken on board and will work to address.

Communication channels

In terms of keeping the community informed, the news items, volunteer case studies and well received; of the 75% of respondents who receive the newsletter, less than 1% said that the content was not interesting or relevant.

The number of followers on social media has increased; of those who responded 12% of you now follow us on Twitter, an increase of 9% and 16% of you follow us on Facebook, an increase of 8%.

Some of you said you would like more regular contact by telephone and we’d like to remind you that you can call our charity helplines if you want to have questions, need help or have any feedback for us. Alternatively, you can request a call back.

Thank you

Volunteer feedback is so important as it helps us to find ways to improve our service, so we can maintain your interest in vital dementia research and ensure that you have an enjoyable experience along the way!

To ensure you are receiving all regular news and updates, log into your account and manage your communication options.