Solving the great
dementia / tech challenge

In a leafy corner of Northamptonshire, work is underway to help address one of the great neurological conundrums of our time.

Driven in part by ageing populations, dementia rates are soaring, with one in two people in the UK affected by the condition either directly or via a loved one, according to Alzheimer’s Research UK.

Technology’s ceaseless advance into healthcare, however, has raised the prospect of finding new ways of better supporting people living with dementia.

But how can the many barriers to harnessing this technology – like usability, cost, stigma and lack of evidence - be overcome?

This is the challenge researchers and clinicians at St Andrew’s Healthcare have taken on, working with tech experts at Memjo; an enterprise founded at the University of East Anglia, which has developed an innovative, digitised version of memory journals for people with dementia and other neurological conditions.

Yet the most important contributors to the project are perhaps the participants living with dementia.

“I’m gonna get one of these,” says one such resident as he taps at a tablet device in a room overlooking the tree-lined grounds of St Andrew’s Hospital in Northampton. “How much are they?”

Another laughs to himself while using the device to watch an old sitcom he hasn’t seen for years.

While seemingly inconsequential in themselves, these moments of interaction and feedback are helping to address a dearth in dementia research; and form the basis of a long-term project which aims to unleash the potential of technology in the lives of people with the condition.

St Andrew’s and Memjo have a joint ambition to develop dementia-friendly technology that is well evidenced, universally accessible and able to span different care settings. Their focal point is Memjo’s prototype tablet device designed to promote cognitive stimulation and reminiscence.

In a recently published proof-of-concept study (Girardi et al.,2023) they tested the device among individuals with dementia, as well as Huntington’s disease (HD). Their aim was to gauge the response from patients and gather learnings that might help to develop the product. 

Five patients, one with Alzheimer’s dementia and four with dementia associated with HD, were recruited from St Andrew’s Lowther Dementia village and a Huntington’s disease ward. Engagement, usability and preliminary benefits were assessed via observations, open-ended questions and subjective ratings.

The headline findings were that the content triggered “reminiscence, discussion and positive behavioural and emotional responses”.

The paper reads: “The participants were confident using the tablet but needed support interacting with the touchscreen and, at times, to encourage communication. Music and videos were particularly successful in engaging most participants despite their cognitive and physical difficulties.”

It concluded that: “Co-production in clinical practice can be successfully implemented to develop activities that meet the interests and needs of patients with dementia and HD.

“The varied and flexible assessment provided rich feedback that will be used to improve the device. This highlights avenues of focus for the development of future pools of activities.”

The positive patient feedback recorded among the five participants in the study hints at the long-term potential of the technology. It is hoped that the paper is the first step towards a widely accessible platform that can support people with dementia and other progressive neurological conditions in any care setting.

Crucial on the development journey ahead is ongoing “co-production” as a means of developing an impactful addition to the daily routine of patients, says Dr Inga Stewart, consultant clinical psychologist and clinical research fellow at St Andrew’s.

“Co-production is very important within our organisation,” she says. “This project has been developed with people with lived experience – those with dementia or caring for people with the condition, alongside the professionals.

“We have to involve the people that will be using the technology and not make assumptions, as a clinician or a technology developer, about what may or may not be helpful.”

This commitment to listening to the users living with dementia, and their loved ones, is an unfortunately rare approach in the wider world of dementia management, Dr Stewart adds.

“Research tells us that there tends to be a hierarchy in dementia care planning of who gets listened to. You have clinicians and healthcare professionals, health and social care teams and then the partners in care, other relatives and the patients themselves, who are often not listened to.”

Simon Stokes, co-founder of Memjo, agrees that empowering users of the technology to shape its development is critical to its success.

“When developing mobile apps or big applications it has to be led by the users, rather than the other way round and taking them with you.”

Supporting the project’s development is St Andrew’s Healthcare’s, Research Centre, overseen by Dr Kieran Breen, who believes agility is key to harnessing new technologies that could benefit patients.

“At St Andrew’s if we see technology with potential to help, we can go with it and try it out because we’re agile and patient-led, so we can identify the patients who this could help,” he says.

"I recently spoke to one of my counterparts within an NHS trust who said he was somewhat envious of the fact that we can come across something like Memjo and aren't under the same restrictions as an NHS trust would be. They would have to go through so many hoops before they could even start thinking about trying it.

“We've done a lot of work in the use of patient data and developed our patient dashboard which now allows clinicians to visualise their patients’ clinical outputs very readily in diagrammatic format. Patients can fill in feedback using tablets on the ward which are readily available to clinicians.

“Most of what we do now is on tablets so we have really embraced technology at St Andrews, from a clinical perspective this is just part of how we are adapting to the IT revolution.”

Memjo’s innovation, and the company itself, was inspired by a 2017 hackathon at the University of East Anglia – when technologists and innovators come together for a day or two of collaboration beyond problems.

Its formulation was an answer to the question of how technology could help people with dementia in a user-friendly, accessible way.

Stokes says: “Lots of people have the idea of using technology to help those with dementia but the challenge was finding something viable.

“That’s why we were so keen to get involved in this project with St Andrew’s so that we can show that there is research behind this.

“People with family members with dementia do really struggle to work out how to make technology work for them.

“They know it can be of value, but how can they actually make it work? Part of our research is to work out where the gaps are and what is stopping people from using the technology. It's about thinking about the context and how people use it, and what they get out of it.”

The layout and content on the device were developed during a consultation phase with people with dementia in an organisation that runs reminiscence activities in care homes, day centres and housing associations.

The touchscreen on a standard Lenovo tablet was modified for use by someone who has never used such a device – for example through sensitivity settings, enabling the use of simple finger gestures and increased screen timeout duration.

Bright colours were chosen to optimise clarity as “dementia can be associated with colour vision deficiencies such as reduced colour contrast sensitivity” (Pache et al., 2003).

Of the modifications made by Memjo, Dr Stewart says: “As people get older their fingers may be drier and that may affect their use of a standard touchscreen. They may have a movement disorder or tremor which might have an impact on how accurately they can touch a certain part of the screen.

“They might not be fleeting when they touch it, and touch it for longer. There are other challenges around cognition and how somebody might understand what's on screen and how to navigate their way through it”.

Stokes adds: “We’ve changed the touch experience - there are no double taps and it doesn't matter how long you press something, for example.

“We’ve also thought a lot about icons. When you have lots of applications on a tablet there are multiple icons like home buttons and the three ‘hamburger’ lines and so on. Designers may win awards for funky designs that look cool and swipe in and out, but we don't want any of that. Our aim is to keep it really simple.

“If people are not able to use their fingers they can use a stylus. We explored different ones and in the end found a thick, chunky one, almost like a child's crayon, to work best; but of course, we don't want it to look like a crayon, we want it to look like proper device.

“We wanted to make something that a person with dementia would want to pick up because it looks interesting and make people feel comfortable to do that.

“Also, batteries are pretty good now, so you don't have to have auto-lock or screensavers if the tablet is not touched for a while. The key point is that we can make something that is not intimidating. A lot of people find technology intimidating, some are just more willing to admit it than others.”

The tablet is loaded with photographs, music, videos and games – some of which were provided by day care organisations.

Dr Stewart says: “You can easily make an assumption that a person is not really going to understand something, but it was interesting to see that participating in the research was a meaningful activity in and of itself and everybody seemed to really like it.

“One of the challenges was getting feedback from people who couldn’t tell us how they felt and we had to find other ways of understanding and measuring someone’s interaction.

“We only worked with people with capacity to consent to be part of the research, but it’s really important to be inclusive; so in the future we may look at how to include feedback from people who don't have capacity to consent and are not able to weigh up the pros and cons about participating. The Mental Capacity Act is in place to protect people in best interest decisions and we know that we can safely and ethically do that but how do we get their feedback? That is a future challenge.”

Another impending improvement is the addition of content which is personalised to the user.

Dr Stewart says: “The idea at this proof-of-concept stage was to build something which had all the required capabilities which we could then tailor to the individual’s interests in future.

“At St Andrews we create life story books, interviewing the person and their partners in care, relatives, friends and staff who know the patient. We pull this information together, with preferences, historical information, family photos and so on. But it can be quite clunky with an assistant psychologist having to conduct all the interviews and emails having to be sent out with various attachments.”

The eventual vision is to enable remotely and easily accessible digitised life stories which, crucially, could follow the patient through the different health and social care environments they visit.

Dr Stewart says: “We work really hard at St Andrews to make sure that when someone is discharged from the hospital that their life story work goes with them; but often when people first come to us we are starting from square one.

“This is not fair for the individual, particularly if they aren’t able to remember or communicate information, and the life story book becomes really important to them. We share it with family and the staff at wherever it is they are moving on to so that they don’t have to start again, but we might provide a physical book or email things across.

“We know that higher mortality rates in dementia are linked with moving people from place to place. We need to make this transition as smooth and familiar as possible, with information moving with the patient to help teach their new care team very quickly about them, because it's all there.”

“When someone goes into a general hospital we know people with cognitive impairment can deteriorate and not get back to their previous levels, being in a confusing situation and not having all the familiar people around them. A tablet could follow somebody into hospital so that they would still have that continuity.”

Simon adds: “The tablet is trackable too, and if it was lost or damaged, the data could be remotely wiped and reinstalled on a new device.”

Artificial intelligence (AI), which looks certain to revolutionise many other areas of healthcare, might also help to enhance the impact of the technology in future, says Dr Stewart.  

“The technology could adapt as people use it. If they're interested in something, you could automatically show them more of that. Also, AI can collect information about how long somebody spends on certain content and might help to notice things that we wouldn't in our observations. This could enable us to fine-tune the content for the individual.”

Alongside AI, Stokes also cites “new security innovations, the declining price of tablets and the rise of high-quality networking anywhere” as other tech trends that could speed the development of the project in the years ahead.

In the meantime, plans are underway for the next stage of research.

In the proof-of-concept study, the clinical outcome of the patients was not assessed as it was not considered an interventional trial. It may be in future, however.

“At this stage we wanted to see if the product worked and whether people could use it and enjoy it, as a proof of concept,” says Breen.

“The next stage could be looking at meaningful clinical outcomes. Does it have therapeutic or clinical benefit? Are they gaining from it functionally? That is something we could look at in a much more formalised structure.

“Not everything we do necessarily should have a measurable clinical benefit, however. As an example, we have volunteers who come in and talk to our patients. Every time a volunteer comes in are we going to look at that like a clinical trial and use some clinical outcome score to see is that has a clinical benefit? Of course not.

“We just wanted to make sure that the quality of the lives of our patients was better and that they were enjoying themselves with the device.”

Even without clinical trial status, the approach taken in the proof-of-concept study is well backed up by the existing research base and official guidelines.

As referenced in the study, NICE (2018) recommends that healthcare services need to provide specialist support that promotes independence and wellbeing.

In particular, it highlights the importance of person-centred care and support, tailored to the specific needs of each person living with dementia and the involvement of people living with dementia and their careers in decision-making to provide the appropriate care and support they need.

Cognitive stimulation and reminiscence therapies use structured and unstructured stimuli to improve cognitive skills, mood, social functioning and QoL by promoting the recall of pleasant memories (Liu et al., 2021; Macleod et al., 2021; Woods et al., 2018).

Dr Stewart says: “We already know that these things are good for somebody’s wellbeing and quality of life. We know they are beneficial for cognitive stimulation and maintaining abilities.

“The challenge is being able to provide a causal link, which is really hard in any psychosocial interventions because there are so many factors. What we can do is look at how somebody is before, during and after using the tablet and whether we see an improvement in their wellbeing or quality of life markers.

“This could have a big impact on a person’s day. If you’re working with someone in the moderate to late stage of dementia they may be disorientated. They may not know where they are or what the time it is, or remember what happened to them that morning; but they will be left with a feeling about it. If something horrible happened to them earlier that day, they will be left with a horrible feeling about it, although they may not remember why.

“If something good happens – like the experience of using the device – they will have a good feeling. We intuitively know that this is good and we have this broad evidence base behind it but in the future we’d like to develop a way of measuring the clinical outcomes.”

As the technology evolves, it is hoped that it could eventually help to address risky or behaviours that challenge and reduce distress and agitation in settings like those within St Andrew’s.

“I think the outcomes will become richer and more meaningful as it becomes more personalised and patient centred,” say Dr Stewart.

The team behind the St Andrew’s / Memjo project also see its wider potential in relation to other neurological conditions.

“If something is dementia friendly it could be everybody friendly,” says Dr Stewart. “We have a saying that ‘when you've met one person with dementia you have met one person with dementia’, but we can still learn from people as experts-by-experience.

“This could help people with learning disabilities or other areas where somebody presents with cognitive impairment. It might also help people with lifelong mental health challenges and cognitive change as a result of them.

“There are lots of people that might be unfamiliar with technology that present with cognitive impairment that would be able to benefit from this.

“More and more people in care are using tablet devices which are not designed for someone with cognitive impairment. This is a really good interface and the possibilities of what we put behind it are endless.”

To contact the authors of the research, email: research@stah.org