Clinical Conference 2023: Going beyond business as usual

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By Lorik Zhubi | Friday 05 January 2024

“We have a foundation to build on, we have the beginnings of treatments, but we need to expand on these” said Dr Cath Mummery as she opened Alzheimer’s Research UK’s 2023 Clinical Conference.

The event brought together over 150 clinicians that care and treat people who live with dementia –neurologists, old age psychiatrists, geriatricians, research nurses and many more – to hear about the latest developments in clinical practice and progress in dementia research.

Addressing conference-goers in person and online, Dr Mummery reflected on the growing momentum in the dementia research community, while calling for greater focus on Alzheimer’s drugs that target mechanisms beyond removing amyloid plaques in the brain.

This is a sentiment that we at Alzheimer’s Research UK are fully behind. Dementia is caused by a multitude of factors that disrupt different pathways in the brain, and if we’re really going to deliver a cure then we need to broaden out our treatment approaches and tackle Alzheimer’s – and other types of dementia – using a multi-pronged approach.

There are now over 140 experimental treatments for Alzheimer’s in clinical trials across the globe. While a quarter of these target Alzheimer’s proteins such as amyloid and tau, the majority are venturing into uncharted territories. It’s clear the research community is determined to leave no stone unturned in its relentless pursuit for a cure.

Yet, as research continues to advance, there was one clear take-home message from this year’s Clinical Conference: more must be done to ensure people affected by dementia can reap the benefits of emerging treatments.

“We need to look at our healthcare services and make them fit to deliver these advances,” said Dr Mummery. And in this pivotal juncture, she highlighted two golden opportunities. The first is to align healthcare services and clinical research – for example by taking digital tools used in research facilities and bringing them into primary care settings to improve the patient experience. And second, she called for greater collaboration and knowledge sharing across healthcare specialities – a theme that was returned to several times during the day.

It’s clear that the journey towards a cure demands not just scientific prowess, but a united front and shared efforts in health systems. But how can this be achieved? Three areas caught our eye at the Conference:

  1. Address diversity to ensure people from different backgrounds can benefit from dementia research

Research is our only chance of stopping dementia in its tracks. But historically, fewer people have participated in dementia research compared to other health conditions, with an additional challenge: a lack of representation mirroring the diversity of our society.

Treatments are needed for everyone affected by, or at risk of, dementia regardless of background.

Dr Zunera Khan, from King’s College London, shed light on the hurdles faced by minority groups in accessing dementia research, and what needs to happen on the road ahead. “To break down these barriers, we must embark on a journey at the grassroots level, building trust within our communities,’ she emphasised. But it’s not just about breaking barriers; it’s about creating bridges. Dr Khan underlined the significance of collaboration and transparent communication, urging the need to put a face on research in minority communities. At Alzheimer’s Research UK, that’s exactly what our Dementia Community Champions are helping to achieve in South Asian Communities.

  1. Listen to the voices of people affected by dementia

As research advances, it’s crucial to understand people’s expectations and risk thresholds for new dementia treatments. This is because, like all drugs, new dementia treatments come with side effects. In the case of lecanemab and donanemab, these can be severe, and in rare cases, fatal.

Alzheimer’s Research UK recently commissioned research that revealed that over half of people would accept a high risk of severe side effects if a drug led to a two-year delay in their dementia advancing, helping them to hold on to vital aspects of their life, including reading and driving. Dr Isolde Radford, who worked on these studies, emphasised that this insight should be used to empower clinicians to speak with their patients about the potential harms and benefits of new treatments, drawing wisdom from similar conversations happening in other conditions, like cancer.

The importance at putting people affected by dementia at the heart of these efforts was made crystal clear in a powerful and deeply personal session on the day. Two of Alzheimer’s Research UK supporters shared their stories of dementia and offered their perspectives. Alison Seaward’s sister has early-onset Alzheimer’s and her father died from Alzheimer’s, and she’s now registered for dementia research opportunities herself. Michelle Luscombe’s parents both died from dementia, and Michelle is a strong advocate for dementia research.

Taking part in research “resonates with my family history, and with optimism and hope, and that means we can carry on the momentum of being involved despite the challenges and upset that dementia has brought us.” Alison said.

  1. Share best practice across specialities and from research settings

Dementia is a complex condition, as is the health and care pathway that surrounds it. Typically, no one’s journey looks the same and may involve psychiatrists, doctors who specialise in elderly care (geriatricians) and doctors who specialise in the brain and nervous system (neurologists). These individuals all work across different settings, including memory clinics, hospitals, or community settings like GP practices.

This begs the question of whether there is a need for a dedicated ‘dementia specialist’ profession, akin to an oncologist for cancer. Dr Ben Underwood explained how people living with dementia often “fall through the cracks” between different clinical specialties, ultimately getting ‘’pinballed’’ between services without getting proper care.

During a panel discussion on whether a specialist role was needed, the panellists widely agreed that dementia is such a broad area of medicine, with various complexities and nuances, that it’d be doing more harm than good to put it in its own category of practice. Instead comes the rallying cry for sharing best practice, with Dr Emma Cunningham, Prof Louise Allan, and Prof Jon Schott all advocating for breaking down silos and seamlessly integrating expertise across the dementia pathway.

Sharing best practice may also help aid a more early and accurate diagnosis of dementia, something which is vitally important as new treatments become available. For example, taking lessons from other disease areas like stroke – as highlighted by Prof David Werring – as well as understanding the signs of lesser-known conditions linked to dementia, such as normal pressure hydrocephalus (a brain disorder in which excess cerebrospinal fluid accumulates in the brain) as explained by Dr Chris Carswell.

There is also a lot to learn from research, including new technology that could one day be used in clinical settings. For example, bed mats with pressure sensors that allow for digital monitoring of sleep patterns in helping to detect preclinical dementia. And the use of emerging, low-cost blood tests in combination with current diagnostic tools that would help result in faster and more accurate diagnosis, ensuring timely access to new treatments when they become available.

In the words of our Chief Medical Officer, Professor Jon Schott, “Different skills, united under a collaborative umbrella— that’s the key to effective dementia care.”

Looking ahead…

It was hard not to come away from the Clinical Conference feeling hopeful about the future, and in awe of the important, but challenging work that the clinical community face every day.

At Alzheimer’s Research UK, we’ll continue to work hard to support this community to provide better care for patients now, and help them to prepare to offer new therapies in the future.

 

 

 

 

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About the author

Lorik Zhubi

Policy Communications Officer