Colin Capper, Associate Director of Evidence and Involvement at Alzheimer’s Society, argues that we need improved dementia care and further innovations for people living with dementia today while we wait for the breakthroughs of tomorrow
Dementia is one of the biggest healthcare challenges both in the UK and globally, causing devastating loss for people living with dementia and their families. The number of people living with the condition is set to rise – from 900,000 today to 1.6 million by 2040 – yet there’s no cure, and we’re only just starting to see drugs which can slow down Alzheimer’s disease – the most common cause of dementia – coming through the pipeline.
Hope for dementia care and treatment
There is hope: in the last twenty years, we’ve witnessed breakthroughs in dementia care and treatment, helping us to understand its causes and set up revolutionary trials for potential treatments. In the last 12 months, two new drugs, lecanemab and donanemab have both shown evidence of being able to slow cognitive decline in early Alzheimer’s disease by over 20%.
Both lecanemab and donanemab target a protein called amyloid, which builds up in the brain in Alzheimer’s disease and is thought to play a role in what causes the disease. It was Alzheimer’s Society research funded over 30 years ago – led by Professor Sir John Hardy – which laid the foundations of the amyloid hypothesis, making drugs like lecanemab and donanemab possible.
In real terms, research has suggested that both drugs could give people up to seven months more time with their families. Lecanemab has already been approved for use and is available in the U.S. Although neither drug is currently available in the UK, lecanemab was recently submitted to the Medicines and Healthcare products Regulatory Authority (MHRA) – the regulatory authority in the UK- for an approval decision.
International drug approval and its impacts
Just as we’re beginning to see rapid developments in the dementia research landscape, the MHRA has also begun to reform their ability to speed up approving drug treatments that regulators have already approved in other major countries. This means, hopefully, that drugs approved internationally could be approved more quickly in the UK. However, NICE will still need to approve drugs for use in the NHS and recognise the value of these treatments for people with Alzheimer’s disease and their families.
We could see a situation where drugs such as lecanemab and donanemab have been approved for use in the UK, but our healthcare systems are not in a position to roll them out. In the UK the system is weighed down by overstretched staff and inadequate infrastructure, and a stagnant diagnosis rate, meaning many people do not get diagnosed at all, or get diagnosed too late, or don’t get an accurate sub-type diagnosis, all of which would prevent access to these disease-slowing drugs at a time when they are thought to be most effective.
An accurate and early dementia diagnosis is key
The importance of getting an accurate dementia diagnosis cannot be understated. An accurate diagnosis will be key to identifying people with Alzheimer’s disease who could benefit from targeted drug treatments like lecanemab and donanemab at the earliest possible opportunity should they become available.
But the benefits of a diagnosis do not just apply to people who could benefit from drug treatments – they apply to everyone. An early and accurate diagnosis is the key to enabling thousands of families across the country to access quality care and support, and provide the precious time needed with loved ones to plan for the future.
Early diagnosis also enables people to take part in research, and breakthroughs in dementia research are simply not possible without the generous participation of people living with dementia. Many people wish to take part in research but are not given the opportunity to do so.
“In the last twenty years, we’ve witnessed breakthroughs in dementia treatment and care, helping us to understand its causes and set up revolutionary trials for potential treatments.”
By enabling people with dementia to take part in research should they wish to do so, researchers gain valuable insights into how these diseases progress, potential new treatments and overall patient experiences which can lead to the development of more effective and personalised diagnosis, treatment and care in the future.
To find out about Alzheimer’s Society research or to take part click here.
Preparing our healthcare systems
While we wait for lecanemab, donanemab and other disease-modifying drugs to come down the line for Alzheimer’s disease and other forms of dementia, we must prepare our healthcare systems to deliver these drugs and continue to fund research looking for other drug candidates with a range of targets.
While producing disease-modifying drug treatments is one part of the puzzle, determining who is eligible for these treatments is another. The solution will, in part, be found in blood biomarker testing.
Recently, alongside our partners Alzheimer’s Research UK and the National Institute for Health and Care Research, we have been granted £5 million in funding from the People’s Postcode Lottery Dream Fund, to fund research which will gather the evidence needed to start rolling out a groundbreaking new blood test for dementia into UK clinics to support diagnosis.
Blood biomarker testing
We need to see revolutionary diagnostic tools such as blood biomarker testing – and other methods such as PET brain scanning and cerebrospinal fluid testing – as the foundation of dementia diagnosis and treatment.
Currently, the best available data suggests that only 2% of people receive advanced diagnostic tests such as PET scans. That must change. Straightforward and widely available diagnostic tools are the key to identifying who could benefit from these drug treatments and who will require other forms of tailored support. People deserve to know which disease is causing their dementia symptoms and these tools will give people living with dementia the answers they need, more swiftly.
“It was Alzheimer’s Society research funded over 30 years ago – led by Professor Sir John Hardy – which laid the foundations of the amyloid hypothesis, making drugs like lecanemab and donanemab possible.”
Dementia research
Today there are 141 drugs – including lecanemab and donanemab – targeting Alzheimer’s disease currently in clinical trials. Importantly, researchers are also aiming to develop treatments which target other diseases causing dementia – like vascular dementia and Lewy body dementia – where there are fewer drugs being tested compared to Alzheimer’s disease.
But we can’t disregard how many families are affected by dementia now and who will likely miss out on the first generation of disease slowing treatments. And even when treatments become available, we will be limited by our ability to diagnose people early and accurately enough, and the time it will take to deliver treatments at scale.
For those able to access future treatments, dementia care and support will continue to play a crucial role. The need to support everyone affected by dementia has never been greater and is poignantly personified in people with rarer forms of dementia – for whom disease modifying treatments are further away from potential regulatory approval than treatments such as lecanemab or donanemab.
Technology for dementia care
This is where we need to turn to additional avenues – such as care and technology. Alzheimer’s Society is the only dementia research charity to also fund care research – from providing better care for care home residents with dementia and cancer to understanding what support people need in the community – as well as harnessing the power of innovation and technology.
Our Accelerator programme has fostered exciting new ventures, such as Jelly Drops hydrating sweets designed to help with water intake, Sibstar a prepaid debit card for people with dementia to stay financially independent, and Milbotix ‘smart socks’ which non-invasively monitor blood pressure and other health metrics.
We’ve also partnered with Innovate UK and Challenge Works to launch the Longitude Prize on Dementia a £4.34 million prize fund calling for innovators across the world to create AI and machine-learning based technology which will enable people with dementia to live independent lives for longer.
When it comes to caring for people with dementia,the technology that does exist is, on the whole, designed for carers and family members to monitor people – for example, GPS tracking devices or home sensors -rather than for use by the person themselves. The Longitude Prize wants to flip that on its head: technology should be created for and with people with dementia, empowering them and adapting with them as their needs change.
Technology has the ability to bridge this gap and could take many forms: the AI powering Netflix recommendations could be harnessed to predict what someone might be trying to say when they struggle to find the right word or facial recognition software could make it easier to remember the people you already know and learn new people you meet.
Accessible technology for those with dementia
We know that existing technology can be too complicated for people living with dementia, with too many barriers in place – sometimes just setting up an account can be challenging. The Prize, which closed for entries at the end of January, will focus on simple-to-use, intuitive technology that learns with the person and focuses only on the features they need.
The competition is also a chance to develop culturally specific innovations, such as technology to help translate for people speaking in a mix of languages for both their families and healthcare professionals.
Dementia research landscape
Overall, the dementia research landscape looks very promising. We’re seeing tantalising signs that it is possible to slow the progression of Alzheimer’s disease, and these are just the first generation of drugs.
We welcome increased funding for research – such as through the Government’s Dementia Mission (a doubling of dementia research funding to £160 million a year by 2024) – and a concerted global effort, wherein which we hope the drugs of tomorrow will be more effective with fewer side effects.
Alongside our investment in care and innovative technologies, Alzheimer’s Society is also a major funder of biomedical and clinical research. By investing in all these areas, we’re able to tackle dementia from every angle, leaving no stone unturned as we continue to bring an end to the devastation caused by dementia.
The Longitude Prize on Dementia is a £4.34 million prize. £3.34 million will be awarded in seed funding and development grants to the most promising solutions, with a £1 million first prize to be awarded in 2026.
23 Discovery Award winners were announced in June. More information at dementia.longitudeprize.org.
