Last November, we invited Join Dementia Research volunteers to have their say and tell us about their experiences of the service by completing our annual survey.

Feedback from our volunteers helps us to understand what we are doing well and enables us to identify areas for improvement.

Engagement

The annual survey was sent out to 46,394 volunteers in November, which is the most we have ever distributed. 

It included a range of multiple choice and free text questions, to collect your views on the Join Dementia Research service and website. 

We were pleased to see that 86% of volunteers who responded had an excellent, good or ok experience of the service. 

The top 3 reasons volunteers gave for signing up were:

  • To help future generations 
  • Because a loved one or someone I know such as friend, colleague or neighbour has or had dementia
  • I am worried about future risk of dementia 

We are continuing to run a ‘register by phone’ service as an alternative to registering online or by post. Of the respondents that have used this callback service, 81% stated that the service was very helpful or helpful. This is a 15% increase compared to the 2022 survey and we are pleased to hear that volunteers have found the service useful. 

What you said

The ‘comments’ section from the survey included some interesting feedback. 

Many of the comments related to communication and the regular reminders to check your accounts for studies you could take part in. As a result of this, we are exploring new avenues for keeping in regular contact with Join Dementia Research volunteers. 

Just 53% of respondents stated they had logged into their online accounts since registration. Of these, the majority stated they came online to check for, express interest in or take part in a study. Only 27% stated they came online to update their details. A further 33% of respondents said they had not accessed their accounts since registration.

We encourage volunteers to regularly log into their accounts to update important information,  such as disease progression and medical information. This is to ensure researchers have accurate, up-to-date data they can use to find suitable participants for their studies. Contact details should also be kept up-to-date, so that we can send you communications such as our quarterly newsletter. 

Some of our volunteers found it difficult to get back into their accounts after forgetting their password. As a result of this, we have published new guidelines on how to reset your password. 

Logging into your account is also important to check on any studies that you have matched with. 

Communication channels

When respondents were asked what would encourage them to visit the Join Dementia Research website more often, the most common responses were:

  • More research study opportunities
  • Up to date content
  • Reporting of study results
  • Results of studies I was involved in 

This has led to the Join Dementia Research team focusing on ensuring the website is updated regularly with content on both open studies and results of closed studies. Visit our news feed for the latest information on research studies supported by our service. We also regularly post updates on our X (formerly Twitter) and Facebook channels and in our quarterly newsletter. You can sign up via Mailchimp if you do not already receive this newsletter.

Thank you for taking part in our survey 

Volunteer feedback is so important as it helps us to find ways to improve our service. We want to ensure that we maintain your interest in vital dementia research and that you have an enjoyable experience of using our service. 

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