Listening to the patient voice: Why developing new dementia treatments is everyone’s job

Developing life-changing treatments for dementia is a team effort that takes commitment from all involved, from charities and patients to pharma and industry.

That’s according to Alzheimer’s Research UK, which this week launched its Shaping Future Treatments survey, aimed at ensuring the patient voice is front and centre of all future research projects.

It’s the latest in a long line of projects the organisation has worked on in partnership with industry, says head of policy, Dr Alison Evans.

Working together

“We are aware that we can't develop new treatments on our own – in fact none of the stakeholders across the board can do this by themselves,” she says.

“The pharmaceutical and biotech industries play a key part in the process of developing and bringing new and lifesaving treatments to people affected by dementia, so it’s important for us to work in collaboration with industry.”

The Dementia Consortium is one example of the group’s cross-sector approach. It was established in 2013, with two pharmaceutical partners, to co-fund early stage drug development.

“It’s grown significantly and now in 2019 we have seven pharma partners,” Evans says, adding that the group’s Psychiatry Consortium worked in a similar way to co-fund research into treatments for the psychiatric symptoms of dementia.

“I think it's a good example of how a charity can look at the research and development pipeline, understand where we can have the biggest impact, and then work with others to fill those knowledge gaps.”

Shaping future treatments

The results of the Shaping Future Treatments project will help the charity and researchers to understand where resources are most needed.

It will ask people about their life and healthcare priorities and their perceptions of brain health.

“This survey will give us the richness of data we need to be able to inform the work that will develop future dementia treatments,” says Evans.

“At the moment, we measure what we can. We look at declines in cognition as a proxy, but in terms of what that means in relation to what people can do in, and want out of, life, we don't have that information.

“We want to know what we should be measuring, how we can do that, and whether that’s what people would want. It will tell us if measuring a change in a certain biomarker, for example, could represent the most effective and meaningful change for somebody living with the condition.”

The data could also prove invaluable to regulators looking for a deeper understanding of how new treatments would tackle any unmet needs.

“Regulators often involve people who have experienced different diseases when they're reviewing new treatments, but we don't have that big data set to show which factors are the most important to people at the moment,” Evans says.

“It’s really important to be able to show pharma companies, regulators and those who are paying for future treatments which areas actually matter the most to people.”

The survey, which wants to capture the views of people living with dementia as well as those who may develop it in the future, is open to everyone over the age of 18.

It was important to get as wide a range of views as possible as the disease impacts on people in so many different ways, and because of what the latest developments are telling us, Evans says.

“The current evidence in the field suggests the treatments coming through will hopefully be disease modifying. It also looks like they might be most effective if we can treat at the very earliest stages of disease, potentially even pre-clinically.

“We now know that the diseases that cause dementia start years before people develop symptoms. That's why we're keen to get the widest general public view and find out what it is that people really want to maintain in their lives and daily activities.”

The team also hope to use the survey as a basis for a future piece of work on attitudes around risk/ benefit and side effect profiles. The group wants to know how people feel about tolerating the potential side effects of medication at different stages of the disease, from pre-clinical onwards.

Shaping approaches

All stakeholders have a role to play in tackling disease, says Evans, adding that health charities had much to contribute.

“We’ve had some really useful discussions in the last year around access to future treatments, and our inputs and views in that space,” she said, pointing to a modelling project the charity worked on with the London School of Economics, as well as reports on how future dementia treatments may impact the health service.

“These have helped to influence pharmaceutical companies’ perspectives of how they prepare for future treatments, so, in that way, I think our work is helping to shape their approach.”

The dementia care and treatment landscape is changing, and the future looks brighter than it ever has. This, Alzheimer’s Research UK believes, is testament to the therapy area’s joint working approach.

To take part in the survey, click here

About the Author

Amanda Barrell is a health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, healthcare professionals and the general public.