How patient voices are shaping dementia and HD care

The requirement that patients play an active role in their care planning is enshrined in UK law. For patients with neurodegenerative disorders like dementia and Huntington’s disease (HD), that active engagement is perhaps even more vital.

But despite the regulations of the Care Act, true co-production, where patients, carers and professionals work together as equal partners, is rarely practiced in healthcare.

NR Times speaks to Dr Inga Stewart, Head of Progressive Neurological Conditions Research Programme at St Andrew’s Healthcare, about the new phase of her research looking at the impact of her dementia care planning co-production toolkit.

The Consultant Clinical Psychologist also updates us on the development of a prototype computer tablet-based software system for dementia, and reveals details of a major collaboration on behavioural change in Huntington’s.

“Traditionally, in paternalistic healthcare systems, clinicians and academics are seen as the experts—the decision-makers with the authoritative voice. However, expertise by experience is just as valuable,” Dr Stewart tells NR Times. 

“A person with lived experience—who they are, where they’ve come from, what they want now, and what they hope for in the future — offers a perspective that no one else can provide.”

It stands to reason that people with dementia should be included in their own ‘triangle of care’. However, despite the best intentions of clinicians and carers, patients' voices are often drowned out. 

This inspired Dr Stewart to develop a toolkit to help St Andrew’s staff better co-produce care planning with people with dementia, and their carers as partners in care.

The toolkit was written with people with dementia and with accessibility in mind, ensuring that anybody can pick it up and use it as a framework.

Dr Stewart says: “But then we asked ourselves: How do we know this is making a difference? And how does anyone else know, so they’re motivated to adopt it too?

“From trialling various initiatives—like testing the toolkit at St Andrew's—we’ve seen first-hand that staff are under immense pressure, juggling countless tasks. 

“With so many competing demands, how do we ensure that co-production in care planning isn’t just something people want to do because it’s the right thing, but something they have to do because it’s an established expectation?”

“And that question is leading us into our next phase.”

For this next phase, an expanded research team is exploring how to effectively measure co-production in care planning. This includes researchers from universities of Northampton, Exeter and East Anglia, and experts by experience of living with a dementia diagnosis or caring for someone with dementia. Ultimately, this will allow St Andrew’s to provide strong evidence for the impact of the toolkit in the future.

Dr Stewart and her team are continuing to work with the Co-Production Collective at University College London and volunteers from the Alzheimer’s Society.

The researchers are also collaborating with Tide — a national charity run by and for carers of people with dementia — bringing the carer’s voice more explicitly into the research.

An international problem

It’s perhaps unsurprising that the perspectives of clinicians and academics vastly outnumber those of people with dementia and their carers in the available research literature.

But most of the eight papers Dr Stewart found in a literature review reflected a general dissatisfaction with the level of co-production in knowledge exchanges and decision making.

Respondents expressed a want to be actively involved in their own care planning. And while there may be some involvement with people with dementia and carers, it is often very one-way, with the clinician telling the person or carer what’s going on.

But in order for Dr Stewart’s toolkit to be more widely adopted, she will need to evidence that it makes not just ethical sense but financial sense, too.

Dr Stewart says: “We know that in health and social care the bottom line, unfortunately, is money.

“So we need to be looking at the health economy side of these interventions as well.

“We need to show that it's not just the right thing to do, but it's actually better for the public purse.

“It's logical, isn't it? It's right to ask somebody about what they want from their own care. I can't imagine anyone being able to argue against that.

“But also it would make sense surely that you're going to get better quality care plans, which are going to do a better job, which is going to be cheaper in the long run.

“That's what changes culture, ultimately.”

The co-production mentality

The co-production mentality is central to another innovation being trialled by Dr Stewart and her team.

Last year, the service teamed up with Memjo to develop a dementia-friendly digital tablet.

They are now preparing to trial their product at St Andrew’s and in care facilities and people’s own homes.

The tech was developed with patients at St Andrew’s who have provided invaluable insights to the development team. 

Dr Stewart says: “They are the end users of this technology, so involving experts by experience is a useful thing to do.

“We're looking at the software system so that people with dementia and Huntington's can utilise these products themselves in a way that's accessible.”

From Tiktok to Netflix, highly trained algorithms play a significant role in shaping the content we see day to day.

With that in mind, Dr Stewart and the research team are looking at how the digital tablet can adapt to user’s film, music and games preferences.

They will also look at the security practicalities of using the device within a hospital or care home setting.

Dr Stewart says: “We're also going to trial it over six months so that participants can help us to develop the product further and give us a better idea of the practicalities.”

HD and risk management

While most of us will be impacted by dementia in some way, whether directly or indirectly, Huntington’s is a relatively rare disease affecting around 1 in 10,000 people in the UK. 

As such, most research on the condition to date has focussed on finding disease-modifying therapeutics and on symptom control.

Behavioural symptoms are often the most problematic aspect of the condition for people with Huntington’s and their families. One major gap identified by Dr Stewart and her team is around the impact of psychosocial interventions on behavioural change and risk. 

To date, there is not enough evidence to support these interventions.

Dr Stewart says:

“A few years ago, the British Psychological Society published a piece of work looking at psychosocial interventions. The conclusion was that they couldn't come to a conclusion because the evidence base wasn't robust enough.

“So we’ve put together a research team to look at how we can best measure behaviours that are challenging to deal with and develop risk-management interventions we could use within the HD population. Of course, in order to do that, we need to know what it is that we need to measure in the first place.

“Once we know what we’re measuring, we can begin testing interventions and strengthening the evidence base.

“While there is already valuable work being done, we need a robust framework to properly measure its impact.”

St Andrew’s is working alongside the universities of Cambridge and Cardiff and the Huntington's Disease Association (HDA), with the support of clinical teams, including within Elysium Healthcare.

Dr Stewart and her team are determined to ensure that their work across all these areas is translational and will benefit people in their care today.

She reiterates that there is huge value in drawing on people's expertise and feedback - not just for the benefit of the research and decision making but for the wellbeing of patients themselves.

Dr Stewart says:

“We see our patients really embrace the opportunity to participate in research. For example, Memjo is great for that. Our previous virtual reality (VR) and dementia research was also a really fun activity to engage with.”

"It means a lot to them to have a voice and be able to influence what's out there. There’s also huge value in engaging in a meaningful and interesting activity."

To find out more about the co-production work taking place at St Andrew’s, email Dr Inga Stewart at CPNC@stah.org

To learn more about St Andrew's Healthcare's Dementia and Huntington's disease services, visit St Andrew's neuropsychiatry services