After several initiatives to increase recruits to Join Dementia Research from a local Memory Assessment Service proved unsuccessful, one research team found a way to give patients the time and space needed to make a decision, increasing sign-ups considerably. 

Taking the time to discuss research properly with patients

Jacqueline Smart
Clinical Research Facilitator,
NIHR Clinical Research Network,
West Midlands

What were you doing initially to increase recruitment to Join Dementia Research in the West Midlands?
To increase registration to Join Dementia Research, together with a colleague of mine by the name of Jane Dyer, who is a Clinical Practitioner and also a Research Nurse. We looked at various ways of which we could possibly do it and one of the things that we did do was to approach the team from the Memory Assessment Service to see whether they could speak to their patients and also their carers to see if they would be interested in being involved. They were really keen. They really did embrace this, but one of the issues that arose was the time, it was the time for them to actually find to talk about Join Dementia Research and also encourage them to sign up to the registration.

What happened next?
We then went away and actually listened to what the team from the Memory Assessment Service were saying to us, and we recognised that we needed some help, possibly from somebody else. So we thought about it for a little while and we thought, well, actually, we are supported by the Alzheimer’s Society why don’t we actually have a conversation with them to see whether they could support us with our initiative.

Mary Keddy
Join Dementia Research Service Supervisor,
Alzheimer’s Society

How did Alzheimer’s Society help and what were the benefits of this partnership?
We were approached by Jackie and Jane for some support with increasing registrations with their initiative and we were really pleased and excited to get involved. So what do we actually do? In practice what happens is that once a month we collect referrals from the Memory Assessment Service and that means we then make direct contact by telephone with people affected by dementia. That’s the patient themselves and their families. We talk to them about what the service means, what it looks like, how it works, and if they’re still interested, then importantly we can register them over the phone and for a lot of people that is far more accessible. When you talk to people about Join Dementia Research, they are interested and people have told us how much they value that one to one discussion and of course, when we register people, we attribute that registration to the referring service.

Sharon Boulter
Join Dementia Research Telephone Advisor,
Alzheimer’s Society

What happens once a volunteer registers?
Once we’ve actually registered somebody over the phone, as a telephone advisor, we’re instantly able to see what types of research studies people might initially match to. We’re able to go into a little bit more depth about what those research studies might entail, and once people hear that they’re matched, they suddenly are quite happy and quite eager to get involved. We feel and we know that people that get involved in dementia research feel empowered to make a difference for future generations. Also, post registration, we are able to provide ongoing support and advice to enable individuals to be able to engage and participate in dementia research. Now that might be something as simple as resetting their password or updating their profile to ensure that they are actually matched to the most suitable studies that researchers are looking for volunteers.

Lessons learnt & benefits
So the lessons we’ve learnt. This is about personal contact, and it works. More people are registering and of course, people have questions when they register for this service. What it’s like to take part in dementia research, how the service works and that takes time. And it’s time the help desk has so we’re very happy to be involved. And of course, when registering people being able to straight away talk about the studies they’ve initially matched with, we found it really gives people a boost. Finally, this is about teamwork and for ourselves at Alzheimer’s Society working with the Memory Assessment Service and the West Midlands Clinical Research Network, we’ve just found a system that is win win.

Find out about other ways of encouraging your patients, their carers and families to sign up to Join Dementia Research. Visit nhs.joindementiaresearch.nihr.ac.uk

Developed in partnership:
NIHR | National Institute for Health Research
Alzheimer Scotland | Action on Dementia
Alzheimer’s Research UK | Make breakthroughs possible
Alzheimer’s Society | United Against Dementia

In her role as Research Facilitator for the National Institute for Health Research (NIHR) West Midlands Clinical Research Network, Jacqueline Smart had been working closely with Jane Dyer, a Senior Practitioner for the Birmingham Memory Assessment Service and research nurse at the Birmingham and Solihull Mental Health NHS Foundation Trust. Initially, they sent letters and leaflets to the Service’s patients and carers who expressed an interest to know more about Join Dementia Research but had a disappointing take-up, despite phoning to follow up wherever possible.

They approached the other members of the Memory Assessment Service team directly to see if they would be able to discuss and complete registration forms with patients as part of standard appointments. While this did result in more sign-ups, the feedback from the team was that it was too time-consuming to do this on a regular basis, since the staff had a finite time allocated per patient and research conversations often ate into appointment time.

Streamlining the system

Jacqueline Smart says: “We knew that once we explained everything to people they would be interested – we’d already proved that – but how to keep the initiative fresh was a problem, and we realised we had pushed the staff at the service as far as we could.”

Sensing that the initiative needed more time per patient, Jacqueline Smart approached the Alzheimer’s Society to see if they would be willing to help out. The Society is a founding partner of the Join Dementia Research service and hosts its own Join Dementia Research helpdesk. They were keen to get involved and agreed that their own Join Dementia Research helpdesk advisers would establish contact with interested patients or carers referred from the memory service, discuss the idea of participating in research, and where possible sign them up to the Join Dementia Research service.

The result was a streamlined system where the Memory Assessment Service staff simply asked their patients if they were interested in knowing more about Join Dementia Research, and if so, passed this information on to the Alzheimer’s Society Join Dementia Research helpdesk team. This resulted in staff at the Memory Assessment Service spending only a few minutes on this with patients, rather than eating into their appointment time explaining about the service and the signup process.

Jane Dyer explains: “We started trying this in November 2019. Since lockdown started we’ve averaged between 10 and 20 sign-ups each month, which is far more than we’ve ever got before, even despite the pandemic and all its difficulties.”

Personal contact is valued

Mary Keddy (Alzheimer’s Society), Jacqueline Smart (NIHR) and Sharon Boulter (Alzheimer’s Society).

Meanwhile, for the Alzheimer’s Society, it’s been rewarding to have a list of interested people to contact. Mary Keddy, the Alzheimer’s Society Join Dementia Research Helpdesk manager, says: “Talking about research does take time, and that’s why we are here. We have time to talk to people about what the service may mean to them, answer questions, and find out what they would like to do. If people would like to register – we can do that with them over the phone. People really value being in contact with a person who can discuss things with them one to one and who can then register them, rather than going on a website themselves.”

Once registered on the service, the Join Dementia Research helpdesk team can get instantaneous feedback about potential research opportunities. Mary explains: “For some callers, we can see straight away that they have potentially matched to an ongoing study or trial, and we can talk that specific research work through with them.”

“It’s so empowering for people when they find out they can take part in the research. It makes them proud that they will be helping people in the future. They realise they have so much to contribute.”

The people contacted for research by the Alzheimer’s Society may have other support needs, and this is where the scheme is equally successful. Since there are a large number of dementia advisers at the charity, additional support can be provided for anyone who needs it. Jacqueline Smart says: “It’s a win-win situation for everyone. If following the initial contact by the help desk, patients are less interested in research at that moment in time because they have more pressing needs, they can be supported by the charity’s advice specialists. As  a healthcare organisation, we have a duty of care, and we’re sending a clear message – we’re not forgetting anyone.”

Lessons learned:

  • Personal contact can be key to successful recruitment.
  • Patients are likely to have many questions about research, so build in time for discussions where possible.
  • Finding out what studies or trials they are eligible for immediately can give patients a boost.
  • Close teamwork across connected groups can be extremely effective in finding a ‘win-win’ system that works for everyone.