When someone you love develops dementia, it can feel like a living bereavement. As their abilities to comprehend, to remember, and to function deteriorate, the memories that were once shared become fragmented and forgotten. Familiarity is lost to uncertainty. Identities slowly change. We mourn not only a lost relationship, but also a way of life.
It can be deeply distressing to care for someone with dementia. Forgetfulness is the most common characteristic. However, it is far more complex than memory loss alone, and can present with a diverse range of symptoms. As dementia progresses, the patient requires increasing levels of support and supervision, draining mental, physical and emotional reserves from the carer.
There is currently no medical treatment or prevention for dementia. Instead, care focuses on early intervention to slow progress, and managing behavioural or psychological symptoms to make it easier to endure. With the advancement and pervasiveness of digital technologies, care providers are starting to look for technology-based solutions, which can be tailored to individual needs and scaled more readily than a healthcare workforce.
Dr Richard Goveas, a Geriatric Psychiatrist from Singapore’s Institute of Mental Health, has been working with dementia patients for many years. “The difficulty in treating dementia is that every individual is different. They have different pathologies, different symptoms, different preferences. This makes it challenging to address” he explains.
He first started exploring the role of digital technologies in supporting his dementia patients whilst working in the United Kingdom. “When people have dementia it’s tempting to keep them at home because they can get confused and overwhelmed when they go out. However, keeping them at home usually results in them becoming agitated, and this can be difficult to manage.”
To allow his patients to retain some freedoms, Dr Goveas used a GPS tracker system to monitor their movements. A predetermined geographical radius from home would be established for each patient, depending on their individual abilities and usual routines.
“Routine is a function of long-term memory, so people with dementia are very routine-oriented.” says Dr Goveas.
“With the GPS tracker system, an alarm would be triggered if the patient left their prescribed radius. Mostly they wouldn’t, because they simply follow their usual routines,” he says. “The tracker allows them to have the freedom to continue with their everyday routines, and not feel trapped and upset at home. And on the rare occasions they get lost, we can quickly find them.”
In Singapore, Dr Goveas has been exploring the role of digital gaming to engage his senior dementia patients, many of whom have low literacy levels which makes it challenging to occupy them with traditional activities like reading or crosswords.
One of the benefits of using a digital approach with dementia patients is that the difficulty level or activity model can be slowly adjusted to keep them occupied. For instance, matching games, using images of familiar objects such as local foods or mah-jong tiles, are designed to be simple to interact with, and easy to relate to, which encourages engagement.
However, Dr Goveas warns that this approach needs to be carefully managed. “In outpatient settings, we are using digital tools for a variety of activities like Sudoku, and games like bowling, and dance. It provides good stimulation, and can be tailored to their needs. This is a benefit of digital engagement, as it can be made a little more challenging if they respond well to that. However, we need to be mindful that if we make the activities increasingly difficult, the patients will eventually give up.”
“Dementia is a continuum, not a static state” notes Dr. Goveas. “It doesn’t stay still in time. It continually changes, and deteriorates, so our interventions need to adapt to this, and to everyone’s individual experience of it.”
”It continually changes, and deteriorates, so our interventions need to adapt to this.”
Digital brain training
Helena Foo, Co-Founder of Eden Lab, is keen to reinforce this same philosophy through her career in nursing, and in nursing education. She stumbled across Electroencephalography (EEG) technology whilst looking for more impactful ways to engage with her patients. “I came across digital brain training several years ago, and wondered if this would be helpful for my seniors with dementia” she explains.
Having explored the technology, Foo was quickly convinced that the potential was significant. She was so impressed, in fact, that she set up her own company to provide EEG-based brain training services to seniors, to help slow the rate of cognitive decline. “We can’t cure dementia, or prevent it from happening, but with this approach we hope we are able to slow down the decline, and improve the quality of life amongst those affected by such conditions, by learning new skills and keeping their minds active” she adds.
She uses the digital cognitive training technology made accessible through Singapore start-up, Neeuro, and their Senzeband product. Senzeband is an EEG-based technology that reads the user’s brainwaves through a wearable headband device. This connects to a ‘Memorie App’ that Foo and her team teach seniors to use on tablets, gradually increasing the complexity of the exercises they are tasked with, so that their mind remains actively stimulated.
“There are two main things about this use of technology that impress me,” she says. “Firstly, many of my seniors have never touched digital technology before. Despite the benefits it can bring them, there isn’t much uptake because the technology isn’t easy to use and isn’t of interest to them. The app and the Senzeband are very intuitive, though. We were able to help seniors use this technology very quickly, not just to play games, but to really engage them in their mental health.” explains Foo.
“Secondly, the social part is very important. This technology opens their world up. They love the fact they can tell their grandchildren about it. It gives them something to connect over.”
”They love the fact they can tell their grandchildren about it. It gives them something to connect over.”
In addition to working with individuals in the community, Foo works with nursing homes and day care centres, where the care teams have observed improvements in behaviour and cognitive function of their seniors since starting the programme. The games, designed to develop key cognitive skills, seem to be helping improve memory and concentration, based on anecdotal feedback.
Neeuro has also undertaken formal research on the impacts of the technology. A randomised control trial suggests that such computerised cognitive training has the potential to enhance cognitive function, memory and recall amongst seniors.
Costs and affordability
However, despite the benefits, the traction for digital solutions for battling dementia remains slow.
Foo believes is partly due to lack of awareness of how technology could help in this area of care, as well as a fear of trying new technology amongst some seniors. “Currently, this programme is offered at an affordable price in Singapore, thanks to grant funding, which supports organisations keen to embrace this technology in enhancing the care of their seniors.” explains Foo.
Dr Goveas agrees that affordability is critical. “Cost is a major barrier to adopting digital solutions, particularly for people who attend public hospitals. If high-tech solutions need to be paid for by the patient, it would prove too expensive for most public healthcare patients.”
Globally, the cost of managing dementia is estimated at more than US$ 1 trillion, and looks set to grow substantially with the ageing populations many countries are facing. Unfortunately traditional approaches to managing the condition are highly resource-intensive and increasingly unsustainable.
One company attempting to reduce the costs of impactful digital technologies is Singapore-based Digital Dream. The company, specialising in immersive experiential solutions, was set up by Alex Tan and Lilian Tay in 2017, to bring the benefits of the digitally interactive ‘edutainment’ industry to the health and social service sectors.
Having seen how powerful immersive digital experiences can be for health and wellbeing, Tan and Tay were disappointed by the prohibitive costs, which severely restricted accessibility to such solutions. Even after the high installation costs, most commercial solutions would have limited experience options available, and the cost of producing new experiences can be prohibitively expensive.
They established Digital Dream to create affordable ‘Do-It-Yourself’ alternatives, which enable patients to design their own immersive experiences for a truly empowering effect. Tan describes the development of new content as being as “simple as creating a PowerPoint slideshow”, which transforms the accessibility and potential impact of the technology.
“We recently installed an immersive experience at a nursing home.” explains Tay.
“We invited some of the seniors with dementia to try the technology, and took them on a virtual tour of the world. One of the seniors asked to visit Iceland. When the 360 degree video surrounded her, she started telling us about going there with her late husband. Stories fell from her lips. The experience touched her profoundly and unlocked so many memories.”
“The technology doesn’t cure them, but it seems to connect to them and engage them in a powerful and moving way,” adds Tan. “It’s the physical interaction that seems to create the impacts rather than passive engagement.”
“The technology doesn’t cure them, but it seems to connect to them and engage them in a powerful and moving way.”
Although the scale of adoption appears still to be in the early stages, the potential for digital technology to enhance the quality of life for those experiencing dementia, and even slow the rate of decline, appears to merit greater research, and arguably a reinvestment of funds away from labour-intensive traditional management of symptoms, to digitally-empowered solutions.
Tan concludes: “The world is already isolating seniors. Through our technology, we are opening the world back up for them.”
Tamsin Greulich-Smith is former Chief of the Smart Health Leadership Centre at the National University of Singapore’s Institute of Systems Science. She is now Director, School of X, DesignSingapore Council.