“Why wouldn’t we want to do that?” Volunteer perspectives on taking part in dementia research

When Alison Littleford’s husband Frank was diagnosed with Alzheimer’s in February 2020, the couple told no one about his diagnosis other than family and close friends.

But they soon began to question this, and Alison said they “began a process of complete change. We realised that, by speaking publicly about dementia and by taking part in research, we could make a positive difference in the future for families facing the devastation of a dementia diagnosis”.

The couple also signed up to Join Dementia Research in 2022, and between them have taken part in 15 studies so far. Alison says, “without research, progress doesn’t happen, and cures aren’t found”.

Join Dementia Research is a service run by the NHS, in partnership with Alzheimer’s Research UK, Alzheimer Scotland and Alzheimer’s Society. It matches willing volunteers with researchers who are looking for people to take part in their studies.

Anyone over the age of 18 living in the UK can take part in research via the service, helping scientists to explore new ways to diagnose, prevent and treat diseases like Alzheimer’s and vascular dementia.

“I just think, what is there to lose?” says Alison. “We are helping families in the future who will be able to live lives free of the pain and sadness of dementia – why wouldn’t we do that?”

What has taking part in research involved for them?

So far, Frank and Alison have taken part in over 15 different studies. This has involved an array of interesting tests, from having brains scans and blood tests, to home visits, and completing interviews and online questionnaires.

“I love a questionnaire!” says Alison. “What is enjoyable is interacting with researchers who are really trying to make a difference”.

The studies the couple have taken part in have varied in length, from 30 minutes to complete a questionnaire, to 18 months when Frank took part in a drug trial.

Taking part in research Frank says “it’s given me a sense of helping others, and inclusion. Telling others, through research, what it’s like to live with Alzheimer’s disease, gives me a sense of purpose and self-worth.”

The trial Frank volunteered for was testing an experimental medication called ALZ-801, a tablet that has been designed to try to stop the build-up of a damaging protein called amyloid in Alzheimer’s disease.

 

 

This particular trial involved a subset of people in the early stages of Alzheimer’s disease who carried a certain genetic variant called the E4 apolipoprotein or “APOE4” gene, which means they have a higher risk of developing Alzheimer’s.

The participants, like Frank, took memory and thinking assessments to test if there were differences in symptoms between the group that received the medication, and the group that received a dummy tablet (placebo). Frank says, “the researchers are always lovely, and so grateful that we have agreed to participate”.

The results of this study have not yet been published, but ALZ-801 is one of many clinical trials helping researchers work towards a cure for diseases like Alzheimer’s.

“When the person you love receives a diagnosis of dementia, it feels like there is nothing you can do”, says Alison. “Taking part in research gives back some feeling of control and usefulness.”

Alison has taken part in many studies too, including a study called CognoSpeak. This study, which recruits healthy volunteers like Alison, alongside people with dementia, is investigating if changes in a person’s speech can tell us more about what is causing their memory problems.

Participants in CognoSpeak are asked questions about their health by a ‘digital doctor’, who looks like a real human on a computer screen. Their answers are analysed to look for features in speech that may be related to different types of dementia.

Alison took part in the study as a healthy volunteer, and results of participants like her are compared to speech patterns from other groups of participants, such as those living with dementia. CognoSpeak aims to test new ways to detect dementia, to help make the diagnosis process more efficient and accurate.

How does Join Dementia Research work?

When Alison and Frank registered, “we filled in an online form to create a volunteer profile and were immediately matched up with a range of studies they could take part in”.

Alison explains “I was able to register as Franks representative, which means that I can manage both of our profiles and support him to take part”.

“I log into the Join Dementia Research website regularly to check what studies we are matched with”. This lets them find out what would be involved in a particular study and helps them to decide whether they want to take part or not.

Alison describes the couple’s experience of taking part as “so easy and interesting, there are no negative aspects to taking part as you have complete control over which studies to participate in”.

What has getting involved in research given them?

 Alison feels that her “small contributions will make others in [her] situation in the future, not have to live with the sadness of watching the person they love being gradually lost to dementia”.

“I would thoroughly recommend this to others – it’s easy to sign up, it’s interesting, you have a choice about whether to participate in any research study or not, but most importantly, it means Frank and I are helping researchers to work towards a cure for dementia – something we all desperately need,” she says.

“A cure for the diseases that cause dementia is now a realistic possibility, and we are proud to be involved in helping reach that goal”.

 

• Alzheimer’s Research UK is a partner charity of Join Dementia Research, you can find out more and sign up here: taking part in research or by calling us on 0300 111 5111.
• You can learn more about Frank and Alison’s story here.