A new call back feature introduced on the Join Dementia Research website has made connecting with the service easier than ever.

Join Dementia Research is a national service that links up people who are interested in volunteering for research opportunities with a database of studies that are recruiting.

Join Dementia Research has introduced a ‘call back function’ which is an easy way for healthcare professionals to make referrals for patients who are interested in hearing more about taking part in dementia research. If you’d like to refer a patient for a call back about Join Dementia Research  all you need to do is  obtain your patients consent and simply click on the white ‘Register by phone’ button on the website and fill in their details. Within a few days, helpdesk staff at one of Join Dementia Research’s three charity partners – Alzheimer’s Society, Alzheimer Scotland, or Alzheimer’s Research UK – will contact those referred.

Making it easy for patients to sign up

Sharon Boulter, Join Dementia Research Advisor from Alzheimer’s Society, said: “Not everyone is comfortable navigating their way around technology; and not everyone is online. This is an accessible way for people to easily register with the service, ask any questions, or update their details – and we’ve had an incredibly positive response.”

Referrals to the service only requires the briefest of details – a name and phone number – in order to request a call-back and that ease of contact is appreciated by healthcare professionals and families alike.

Mary Keddy, Join Dementia Research Supervisor at Alzheimer’s Society, added: “The call back function is an excellent way for clinicians to support their patients and families to find out more about opportunities to take part in dementia research. Patients in a clinic appointment often have a lot on their minds, so using the function gives the patient or their family one less thing on their ‘to-do’ list.”


Call back function explained

The Join Dementia Research call back function can be used to make referrals for your patients to take part in research.

(NICE (National Institute for Health and Care Excellence) Logo
“Tell people living with dementia (at all stages of the condition) about research studies they could participate in.”)

Guidelines from the National Institute for Health and Care Excellence state, those who receive a dementia diagnosis should be informed about opportunities to take part in research.

After obtaining your patient’s permission, you can refer them for a call back on Join Dementia Research by clicking the ‘Register by phone’ button in the top right hand corner of the screen. (Maybe use some animation to highlight/circle this).

Then fill in their title, name and phone number. (The dummy details above are filled out on screen)

Tick the box ‘This is a referral from a healthcare setting’

Add the details of your NHS Trust using the search bar (Type in LEEDS as detailed above)

Select the correct Trust and submit.

Once you have done this, one of the charity help desks will call the patient within ten working days. They will make three attempts to contact the patient.

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


Inspiring volunteers

Katie Puckering, Information Services Manager at Alzheimer’s Research UK, said: “We used to receive around 150 postal registration forms for Join Dementia Research a month, but during the pandemic as people stopped going to the places where the forms were located, that dropped off dramatically. The call-back function is important in that it provides another way for people to access the service. We’ve seen an increased public appetite for taking part in research; people have been inspired by the role that volunteers played in COVID-19 vaccine developments. The message that volunteers are needed to make the same progress in dementia research really got through – and when people find out they can take part in studies from home in their own time, we find they are even more inspired to get involved.”

Person-to-person contact

Jennifer Hall, Head of National Support Services at Alzheimer Scotland, believes the call-back system has wider potential for people with dementia and their families, for example signposting people to wider services too.

She remembers: “We phoned back a woman in Perthshire who had left her details with Join Dementia Research after her husband was diagnosed with Alzheimer’s. It turned out that she hadn’t been aware of Alzheimer Scotland, or indeed of any of the help and financial support that was available; so, we were able to link her up with local support and advice and she was very grateful.”

All the charity partners agree that the option of participating in research can provide a vital focus for patients and their families.  Sharon Boulter explains: “One of the best things about becoming involved in dementia research is that it gives people a voice. When someone is diagnosed with dementia, they often feel that others speak ‘for’ them. I think signing up for research does get people excited – and definitely, some of that excitement is hope, whether for themselves or for others in the future and this is an easy way for healthcare professionals to offer that option.”