Can tech improve care for people with dementia?
Image credit: Job Jansweijer/Tover
Harnessing technology could help give people living with dementia, or their carers, the opportunity to maintain and improve their independence, safety, and wellbeing.
As an elderly woman listens to a Geordie folk tune she hasn’t heard since she was a girl, her face lights up. After seven decades, the song has evoked her childhood.
When she was 18, Dorothy Stein moved from Newcastle, UK, to Canada, and now lives in a US care home. Though dementia has robbed her of her memories, the 89-year-old remembers the words to ‘Blaydon Races’ and sings and claps along; her delighted laughter is magical.
“She was connecting deeply to her past,” says her carer, who’d found the song after contacting a Newcastle community group on Facebook for help. She was overwhelmed by the response – and played the tune for Dorothy as suggested. From across the Atlantic, memories flooded back.
Back home in the UK, a Twitter video last summer of former music teacher Paul Harvey playing an improvised piano composition prompted a whirlwind of acclaim – and his song went on to be recorded by the BBC Philharmonic. Diagnosed in 2019 with dementia, he said: “I feel as if I come alive when I play the piano.” Even people with the most severe dementia can still improvise music, say researchers, though simple tasks might elude them.
Moments like this can be few and far between for people with dementia. Could a host of digital tools from simple memory apps through to artificial intelligence (AI) and digital therapies help improve lives?
Any successful pharmaceutical treatment to alter the progress of dementia will become a multi-billion-pound drug. Alzheimer’s disease – the most common cause of dementia – afflicts 50 million people around the world, with 10 million new cases each year. Studies suggest it’s the third leading cause of death after heart disease and cancer.
While a couple of drugs to help treat the disease are in the pipeline, there have been more than 100 failed attempts to develop one. Current drugs treat symptoms rather than altering the disease. “Until we come up with treatments such as stem cell research – to enable us to regenerate damaged neurons (and we’re not even close), we’ll see interventions that slow the progression – giving a higher quality of life for longer, rather than a cure,” says Dr Kevin Hanley, senior clinical consultant at S3 Connected Health.
Spotting neurodegenerative diseases early would be life-changing for millions. Up to two decades before symptoms begin to show, Alzheimer’s is already beginning to develop – the disease damages sufferers’ cognitive abilities by destroying connections between the brain’s nerve cells. Catching it promptly would allow drugs of the future to have the greatest impact before it wreaks havoc.
A multi-million-pound tech-driven project to spot early signs is under way, led by Alzheimer’s Research UK. A specialist team is already one year into the Early Detection of Neurodegenerative diseases (EDoN), and is selecting a handful of wearables and apps from more than 200 pieces of non-invasive technology to help detection.
Researchers plan to apply the muscle of machine learning and artificial intelligence to sleuth out patterns amid data from multiple sources. Tell-tale changes in mood, memory, social interaction, speech and learning through to fine motor skills and heart health might all reveal early clues. Within the next five years, the team plan to have developed and tested a ‘toolkit’ ready for approval and clinical trials which could eventually be used by health services.
Some 85 per cent of adults would happily take an early test to disclose if they were in early stages of diseases such as Alzheimer’s, research shows. In the future, the project might include eye-tracking technology and other innovations, says Rafael Jimenez, director of technical operations at EDoN. “Eventually we hope to emerge with a single device that spots digital fingerprints in people who don’t have obvious symptoms.”
Partners in this project include the UK’s centre for data science and artificial intelligence, the Alan Turing Institute, the National Physics Laboratory, a range of universities and more.
Dementia is also known to affect people’s language – and IBM Research have collaborated with Pfizer to use AI to analyse changes to speech over the years and help flag diseases earlier. To do this, they’ve gone back to the 1940s, at the start of well-known US research into causes of heart disease – the Framingham Heart Study. Volunteers were asked to describe a busy picture of two children stealing cookies while their mother was at the sink. This was the ‘cookie theft’ cognitive test – a line drawing used for many years to help diagnose dementia.
IBM and Pfizer have built an AI trained on hundreds of speech samples from the study over the years, that can analyse grammar, vocabulary and sentence structure – and assess changes in someone’s speech patterns over decades. The AI was able to predict with 70 per cent accuracy whether someone would develop Alzheimer’s in later years, seven and a half years ahead of a formal diagnosis. Researchers in this project say AI could be used in the future as a warning flag to recommend further medical investigations.
For millions in the UK, dementia already exacts a heavy price – upon sufferers and their carers. It’s in managing the disease that technology could lend a hand. Numbers of people with dementia in the UK are forecast to grow beyond one million by 2025, and to more than two million by 2050.
For many, memory loss is just one of many cruel effects of neurodegenerative disease. But researchers believe music can alleviate symptoms – as with Dorothy and her Geordie folk song – because it taps into memories of sounds people heard when very young, even as babies. This is what researchers sought to discover with the app ‘Memory Tracks’ – a song/task platform launched in December 2020 that delves far back into the BBC’s music archives.
For use by carers, it offers music individuals may have heard from the ages of four to 12, and aims to associate daily tasks – getting dressed, taking medicines, eating – with certain tracks and help soothe anxiety. Innovator Mark Brill, who lectures at Birmingham City University, trialled a prototype in North Wales care homes in April last year. While the study was small in scale, research showed music could help “cut through” anxiety and eased confusion, according to carers who used the app.
“We found the most memorable songs were from residents’ earliest years,” he says. His team added Welsh-language songs that resonated with native speakers’ childhoods. “Music has a unique connection with the brain,” he says. “People with advanced dementia still know the song – you can see recognition in their eyes.” While the pandemic has stalled research, he aims to incorporate sensors and machine learning to help the app predict daily patterns and trigger appropriate tunes. As with many health tech innovations, adoption and investment are the greatest hurdles.
Meanwhile, scientists at the University of Cambridge have launched a ‘brain training’ app found to help with mild symptoms. In recent years, virtual reality (VR) has been trialled with dementia patients, taking them back to scenes of their youth.
One of the more powerful VR experiences has shown healthy people what dementia feels like. Simple tasks from making a cup of tea to supermarket shopping can be bewildering, sometimes impossible. This is A Walk Through Dementia, designed by Alzheimer’s Research UK – in VR or 360-degree video to help people empathise – has also been launched as a training course.
Often simple tech is most effective. Reminders sent to a phone or tablet – go for a walk, take your medication – help those with mild cognitive impairment, says Dr Suzanne Molesworth, insights and evaluation advisor at Dementia UK. As the disease progresses, people with dementia may find tablets and phones beyond their reach.
One memorable project she looked at aimed to help people with dementia create their own memories – with a simple wearable fisheye-lens camera – which automatically photographed their lives from the wearer’s perspective. “The aim was to rebuild an autobiographical memory so you could review the day’s events and this helped stimulate memories.” Research around how memory works should inform development of any future tech-enabled care, she says. “Is there more scope to develop tech that could help scaffold memories?”
Digital therapies and medicine also have great potential - once they can pass regulatory hurdles - but many ingenious solutions have never made it to market. The problem is structural, says S3 Connected Health’s Hanley, although the UK is renowned for creativity and expertise.
“You need support to develop a successful application, but also resources in the healthcare system to say, ‘Wow, this is worth investment’. And that’s the challenge in Europe – how do you get the evidence to allow the healthcare system to actually use it?” he asks. He points to Germany, where new laws support digital innovation in healthcare, and medical apps can be fast-tracked through legislation so doctors can prescribe them. “We all benefit when digital health solutions are successful.”
There’s huge potential for technologies to help prevent, diagnose, and manage dementia, he says. “The challenge in Europe is creating an ecosystem which allows great ideas to flourish.”
Treatment of cognitive and functional symptoms associated with Alzheimer’s disease
Could a digital therapy shown to work in mice help humans with Alzheimer’s disease?
A digital neurostimulation device which aims to treat memory and cognition in people with Alzheimer’s disease has passed an early US regulation hurdle and is running in early human trials. US company Cognito Therapeutics is building on the work of researchers at MIT.
They found that sound and light stimulation in mice has potential to improve activities in key areas of the brain affected by Alzheimer’s disease, and potentially improve symptoms. This treatment in mice reduced levels of the toxic amyloid and tau proteins, which are associated with Alzheimer’s.
In January of this year, the US Food and Drug Administration awarded Breakthrough Device Designation to help develop the product.
Tovertafel
It appears deceptively simple: elderly residents of a care home laugh as bubbles – animated light projections on the table in front of them – spew out from the centre. As they reach out to touch, the bubbles make a pleasing virtual pop.
This is just one of many games projected onto a table from a ceiling-mounted device – developed after years of academic research alongside people with dementia and their carers.
When people enter later stages of dementia they are more prone to apathy and less active. They might be sleepy or stare into space for long periods.
As she sat among nursing home residents, Dutch design engineer Dr Hester Anderiesen saw the damage and loneliness this caused. “If you sit still, you get sore muscles and joints – and your brain deteriorates. But I saw a beautiful combination to challenge me as a designer.”
She wanted to know how accessible game playing and all its benefits – teamwork, sensory stimulation, social interaction – was for people with severe Alzheimer’s.
“People in later stages are the least able to press a button. They’ve lost the ability to take the initiative. The world is upside down for this group. We’ve learned so much from them in the co-design process – we’ve built a product that invites them to respond.”
As a result of her PhD research, Anderiesen founded Tovertafel – a projector and layers of interactive light and sound games which succeed in engaging dementia sufferers, getting them moving, laughing, and playing. As she watched, she learned how to tailor the design according to levels of interaction. “Short-term memory is most heavily affected [by dementia]. Maybe minutes after switching on, an individual would withdraw into apathy. If their hands were still, we knew we had to entice them back.” Once switched on, residents were able to play without a carer present – easing the burden on staff.
During trials, care staff witnessed residents become more active, more social, and happier while they played. One small-scale research project noted the positive effects this game had on those with moderate to severe dementia.
Success comes from the detail, says Anderiesen – games are designed for people at different stages of dementia and different abilities. A simple game to rustle leaves can become a challenge to spot hidden ladybirds. There are more complex games too. “It’s important to make connections with a group who might be at different levels, but to avoid making them aware of that.”
Some 4,500 care homes have installed the game – including 750 in the UK, says Anderiesen.
Light projections are beautiful and games naturalistic – a beachball bounces and moves as it would naturally. “Tiny details make the difference and a natural predictable action can give confidence. Many people feel ashamed they have lost their abilities; this helps them feel they can do something right.”
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