‘Increasingly popular’ patient engagement in Alzheimer research is bearing fruit

A man takes part in a gathering on 'World Alzheimer's Day' in Bangalore, India, 21 September 2020 to mark the World Alzheimer's Day. [EPA-EFE/JAGADEESH NV]

This article is part of our special report Alzheimer’s disease in the EU during and after pandemic.

Patient involvement in research on dementia has shown to be mutually beneficial, both to the quality of medical studies and to people’s rights to be involved in relevant research about their own condition, according to health experts.

The World Health Organisation (WHO) recognises dementia as a public health priority. While there are many different forms of dementia, Alzheimer’s disease is the most common form and may contribute to up to 70% of cases.

In May 2017, the World Health Assembly endorsed the Global action plan on the public health response to dementia 2017-2025, providing a comprehensive blueprint for action in many areas, one of which is research.

A recent push toward more people-centred health services is also affecting the way research is conducted and a dedicated panel at this year’s Alzheimer Europe Conference on 29 November dug more into how the research on dementia would benefit from public involvement.

Public involvement in research means that research is being carried out with or by the members of the public, rather than for them, with participants being involved during the whole research process.

Eileen Penman, who took part in the European Prevention of Alzheimer’s Dementia project (EPAD), said the experience of participating in the research was “absolutely fascinating” convincing her that more public involvement should be included in the research area.

“We don’t all just fall off a cliff at the end when we get the diagnosis of Alzheimer’s,” she said.

For Ana Diaz, project officer at Alzheimer Europe, public involvement is not just about talking to people living with the disease, bringing them to a meeting, or just trying to have a conversation.

“It involves a lot of planning and thinking and working along with them,” she stressed.

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The COVID-19 pandemic has had and will continue to have a negative impact on people suffering from dementia, Dr Natasha Azzopardi Muscat from the World Health Organisation (WHO) told EURACTIV in an interview. 

What are the advantages?

Public involvement has advantages both for patients and for researchers and in recent years this approach has become “increasingly popular”, according to Johanna Graeber from the University Medical Center Schleswig-Holstein.

“Patients have the opportunity to advocate their interests through research, and researchers gain valuable insights through the unique knowledge about disease conditions, care and treatments that patients can provide,” she said.

Patient involvement and engagement have shown to be beneficial to the quality of medical research studies, particularly in big research projects that put a heavy burden on the participants, Graeber pointed out.

Alzheimer Europe’s Diaz presented two key arguments in favour of public involvement.

Firstly, it ensures people’s rights as they can be involved in research relevant to their own condition.

Secondly, patient engagement improves the quality, validity, relevance, and utility of research, both from a research and user perspective.

“This includes, for example, highlighting issues and asking questions about things that researchers have perhaps not considered,” she added.

It takes time

To ensure that both research and participants benefit from public involvement, careful planning is needed.

Alison Keogh from the University College Dublin pointed out that public involvement is really time-consuming, therefore some structures are needed to have an effective engagement.

“It’s taken us a year to set up those structures. But we are very confident that those structures are what we need now going forward,“ Keogh said.

Once the structures are in place, there are no other challenges as the participants start engaging with each other and want to learn from each other and exchange their experiences.

“Once you do that groundwork, it’s only beneficial,” Keogh concluded.

Another important aspect of patient engagement is providing the participants with feedback.

Having public involvement will bring about changes, Keogh said. “We had to become very used to the fact that participants’ feedback will help us change, but it will also force us to change.”.

Diaz explained that it is important to update participants on how their feedback has been used and what impact it had on the project.

“It’s not just  […] having feedback from the people involved, from the people with dementia. It’s also about feeding back to them,” she said.

Dementia: everyone has heard the word, but no one understands

“I will eventually have the luxury of forgetting, all those around me won’t have that luxury, they will never forget what dementia has done to us,” Chris Roberts, who has dementia, told EURACTIV.com in an interview, emphasising the need for increased awareness over a devastating disease is present in all corners of the world.

Collecting different experiences

Dementia affects each person in a different way, depending on the underlying causes, other health conditions, and the person’s cognitive functioning before becoming ill.

This is why Stina Saunders, a fellow at the European Prevention of Alzheimer’s Dementia (EPAD) project, highlighted the need for diversity in the research groups.

“We want to diversify the child cohorts, and to make sure that there is an equal representation of people across different socio-economic groups, a racial representation.”

But not everything is about representation. Diaz said it is more about “trying to find people with different backgrounds and different experiences”.

Each contribution in research is equally important despite the level of involvement. “We don’t talk about the level of involvement, we talk about different types of involvement,” Diaz said.

[Edited by Gerardo Fortuna/Zoran Radosavljevic]

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