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Case study: How Sussex researchers are using Join Dementia Research to recruit participants to their dementia study

Dr Ben Hicks and Anomita Karim spoke to CRN Kent, Surrey and Sussex about why they use Join Dementia Research.

Researchers at Brighton and Sussex Medical School are using Join Dementia Research to recruit volunteers to one their studies: Determinants of quality of life, care and costs, and consequences of inequalities in people with dementia and their carers (DETERMIND).

Join Dementia Research is a UK- wide service which matches volunteers with researchers. It enables people with dementia, their carers/those who support them and anyone over 18 to make a difference and take part in vital research studies. The DETERMIND study aims to recruit 1000 people, across parts of England, who have been diagnosed with dementia within the last six months from when they are contacted by the study team. So far, 15 people in Sussex have been recruited via Join Dementia Research.

About the study

Dr Ben Hicks, Research Fellow and Programme Leader for DETERMIND said: “The DETERMIND study is looking at the care pathway for people with dementia after their diagnosis. Evidence has emerged of major inequalities in care for people with dementia which have been driven by factors including: ethnicity, where you live, whether your care is self-funded or paid for by local authorities, and whether you are diagnosed earlier or later. The study addresses fundamental and yet unanswered questions about inequalities in dementia care and what drives good and bad quality of life for people with dementia and their carers following diagnosis.

“Our team will visit study participants once a year for the next three to four years with the aim of tracking their journey through the post-diagnostic care pathway. Via the use of questionnaires, we will collect information on participants’ use of services, their support networks, and their health and well-being. This will enable us to understand how the timeliness and quality of informal and formal care they receive impacts on their quality of life and well-being, thereby helping us to identify areas for improvement.”

How Join Dementia Research helps researchers find potential participants

Anomita Karim, Research Assistant on the DETERMIND Project is responsible for looking through people’s profiles on Join Dementia Research to highlight potential participants: “Join Dementia Research is easy to use. When you click on a profile of someone who has registered on the service, you have access to all their details. When you contact someone who has registered, I would advise other researchers to check that the address listed is correct.

“You can record information about the phone calls you have made to potential participants, so other researchers can see who has already been in contact with that person and read any comments that have been made about that person. For example, if one of my colleagues has noted down that this person was diagnosed a year ago, I know not to contact them about the DETERMIND study because they will not be eligible. I encourage people who sign up to Join Dementia Research to update their diagnosis information as it is an important field for us to look at.

“Our study is looking to recruit participants who are within six months of a dementia diagnosis and we are finding that many people are outside of this window when they sign up to Join Dementia Research. This could be because people are creating their profile on Join Dementia Research when they are more comfortable with their diagnosis.

Dr Hicks concludes: “The word ‘research’ may make people think that they are going to be prodded and poked or have blood taken, so they may have a slight wariness about taking part. This is not the case for our study though or many others that I have been involved with. A lot of the time research just involves a friendly discussion where participants have the opportunity to relay their experiences, vent any frustrations they may have, and positively contribute to the improvement of services and care for themselves and others in a similar situation. It’s great to have a site like Join Dementia Research where we know people are already open to taking part in research as this removes one of our major obstacles for recruitment. I would encourage more people to sign-up and use their voice to bring about positive change within dementia care research, policy and practice.”

People can either sign up via the website, by calling one of the charity partner helplines or by clicking on ‘Register by phone’ on the website. Healthcare professionals can also refer people via the website and someone from one of the charity partners will call you back to help you register.

* Participants are also being recruited via memory clinics, ‘everyone counts’ databases and the study team have spoken at community groups across Sussex