As part of PCL Health’s bi-weekly Healthy Ageing series on Clubhouse, on 10 June we spoke with Dr Samir Shah about the role of technology in managing, preventing and coping with dementia as part of the drive for healthy aging for all.
Dr Shah is the CoFounder of the Dorothy app and a Consultant Older Adult Neuropsychiatrist based in London. Dorothy is the first Augmented Reality assistant for those with dementia and brain injury. It gives those with memory difficulties the ability to learn and navigate their own environments while letting their loved ones manage their caring role.
Dr Shah is also the lead clinician for Waltham Forest Memory Service and Deputy Associate Medical Director with responsibility for adults and older adults. He has worked with the British Film Institute, The Wellcome Trust and North East London Foundation Trust to create ‘Abdullah and Leilah’, the first drama of its kind to focus on transcultural difficulties in dementia. He works with a range of innovative companies and charities to enhance their mental health offering.
What follows is a summary of the key takeaways from this discussion:
One in three of us will die with dementia. Most people don’t realise this. Within 10 years, care costs will double; within 30 years they will triple. That’s $3 trillion worldwide, so it’s a huge ticking time bomb that not only affects the people that have dementia but also impacts on the whole healthcare system across the globe.
If you look at carers, they have a 50% depression rate and it’s not the type of depression that your GP will look after, it’s major depression that requires a psychiatrist. People end up leaving work to become carers, so you have lost hours of productivity and you have the general suffering around it. Dementia raises enormous questions around social care and economics — how do we effectively deliver health care with an increasingly ageing population?
Recently, I worked on a short film with one of my friends who is a former BBC director. She wanted to make a piece of work based around the experiences of her own father. He was an Iraqi immigrant who lived most of his life in the UK but then died in a British nursing home where they gave very good care but nobody could communicate with him because he had lost the ability to speak English. We felt this was an aspect of dementia — and of caring for dementia patients — that was really important to highlight in our multi-cultural society.
More recently, with my clinical work, I’ve become even more interested in finding innovative ways of treating people with these types of problems. About three years ago I met somebody who specialised in augmented reality. We got together and built an iPhone interface for his grandfather, who was suffering very badly with confusion caused by dementia. It was put together in a way that somebody with dementia could still read it. We felt that quite a lot of people might benefit from that because you could, for example, locate your grandfather within short distances. We then received a small grant to test it out in a care home.
The really nice thing, even though we were just doing basic stuff, was that the people using it were able to find their own rooms for the first time and we have some evidence that they were even able to walk a little bit further. One of the things that really attracted me to the project was that it was able to integrate with patient’s real lives. If you think about how monitoring happens, it might involve putting a new device, like a watch, on a patient but those in later stages of dementia won’t always tolerate putting something new on their bodies or will get very stressed by the introduction of new things. Being able to instead put an iPad on people’s existing infrastructure (using existing walkers they already used) meant they didn’t fall over, they could tolerate it, and, importantly, even if they didn’t use it directly, we could still monitor them. Or they could point out what they needed to carers.
The other thing that you are able to do when you’re monitoring somebody is to stop things happening before they get worse so you want them to tell people their needs. We can prompt patients to, for example, drink water, or let a carer know they need to go to the loo, or brush their teeth. This also really benefits carers and reduces their stress and depression as it puts them more back into control of the caring process.
What are the key stages of dementia?
We first have to start off with saying that everybody is an individual. Even in the recognised stages of dementia, there is fluidity and people can move into and out of different stages. In the USA and other places you’ll see the seven stages. In the UK we use a simplified set of 3 stages: mild, moderate, and severe. Severe really means you need to receive extra care, moderate is where you need a bit of help, and mild is where you need a very tiny amount of help, so you might need someone popping in once a day, that kind of thing. Roughly-speaking, people fall into those categories. Again you might have somebody who has risk factors, for example, they might be wandering off, but otherwise, they might be okay. Or they might be getting lost all the time and quite vulnerable, which would move them from a very low level into a much higher level.
What you might find is that because people are very individual and they have their own needs, it may be something very individual that has caused them to become much worse. So, for example, it might be that they have physical pain, or it might be that a familiar person suddenly isn’t around. So it’s a very difficult thing to say what stage a patient is in but what you can say is that the earlier we identify dementia, the more that we can do for people. We can give the right medication, we can put in the right support systems, we can make sure things don’t go downhill as quickly as they might. For example, we could stop somebody from becoming lost because we’ve already put the things in place to stop them becoming vulnerable at that time.
It’s also important to remember that dementia is not one condition. It’s an umbrella term for a range of conditions including Alzheimer’s, Parkinson’s and Lewy Body dementia. Lewy Body and Parkinson’s dementia are cousins of each other. Somebody who has Parkinson’s has a higher chance of also getting a form of dementia. It’s the same disease process but in a different part of the brain, if you like.
Are there any measures that we can all take proactively to mitigate and decrease the stages of dementia?
The first thing that you should do is to get power of attorney because one never knows what will happen tomorrow. The next thing is going to be recording and sharing what your favourite songs are because things like songs, smell and environment have a real effect on people’s wellbeing. And you can’t tell people that information later on once memory is more badly affected.
Research from the Dementia Commission looked into all the reversible causes of dementia. There are some things (around 60%) that we can’t change but if you look at the other 40% and how it’s divided up, the biggest part of that 40% is actually hearing. So if you have hearing problems in midlife and you don’t get a hearing aid, that’s 10% of your entire risk of getting dementia. The other key parts include smoking and socialisation — you must socialise and keep talking to people, try to avoid loneliness — all these things are so so important. If you can learn something new when you can, that’s also really important because you’re exercising your brain in the same way as we all know you need to exercise your muscles.
The second part of that question is about what you can do after you’ve got that diagnosis. People fall along a spectrum. So, if you’re quite early on, you’re still able to say what you want, so make sure you sort out power of attorney. It’s never a nice time to think about this but think about end of life care planning because you might or might not want a picture of your dog next to you when you’re in hospital, or you might not want resuscitation, or you may want other specific things to happen when you become incapacitated. So you need to speak to your doctor and your family about that.
You do need to go for a walk every day so that the brain gets all this new information, including sunlight, because one of the things that quite often happens is this thing called ‘sundowning’ where the day and night cycles flip. But if you get your melatonin, that can really help, and you’re then tired at the end of the day which means you sleep better. So make sure people get out, make sure they’re talking to other people (and sometimes that person might be you because you’re the only one that speaks that language) but make sure a dementia sufferer is talking to people, ideally new people.
Make sure people are eating well and make sure their pain is controlled. People with dementia don’t always express themselves in the way that we might. They won’t tell you they’ve got pain but there might be behavioural impacts, so it might be really difficult for people to speak about that pain but they might scream, they might shout, they might become very agitated. So make sure to also get regular checkups by the GP and get a medication review. Some medications can make people more confused on top of their current level of confusion. So it’s always better to minimise that, for example, we always tell primary care practitioners to minimise opioids, because treating dementia is about looking at the whole person. These are all actually really simple things that can help to slow the progress of dementia down.
What do you think is coming up in terms of technology that can assist with dementia?
Monitoring is the first level, in a way, but it can also also be very bitty because you need sensors everywhere. The next stage would be radar-based systems. There’s already a Google system, which has a little radar device in it and it can reportedly tell you when you’re sleeping (although I’m not sure how accurate it is). But then there are other bigger systems which are very clever, that know who you are because of your gait. They have a radar system and they can see how much you are walking around. The big issue with those systems is that that they can’t say where you are or necessarily what you’re doing. The other part of it (a possible downside) is that you can’t say what you want to these systems. It is hard for patients to have agency and express what they feel. There are some technologies that do use interactivity like Magic Table, which is a really beautiful idea based on using a projector on top of a table. It allows some interesting, simple interactive games where the whole facility can use it along with relatives.
There’s another really nice piece of software where you go on a virtual cycle ride, and you’re in streets that you know from your childhood, and it downloads those from a specified place and then there’s a gamification process on top of that. All of these idea are really about keeping people mentally engaged but also physically fit.
Where are things going, longer term?
I think we’re looking at much more integrated systems, systems that have things at the right time for the right people. We need systems that allow people to relive their memories, to hold onto their memories, to be able to be a genuine assistance to somebody that has a level of interactivity and a level of focus that allows people to come back and want to be part of it. Creating such systems requires a lot of thought, about how dementia sufferers are going to use them, what are the limitations that somebody has with an Alzheimer’s-type brain and what extra support do they need, and how does it empower the whole health system and not just that one person. These are the key questions going forward.
Technology is certainly a huge enabler even if we just think of things like the use of Alexa for red alerts and reminders if a dementia patient is living alone. This kind of thing is very powerful but obviously the human element can never be underestimated.
I think there’s lots of different ways that you can approach it. In terms of monitoring somebody, it’s about making that as passive as possible so that interactive time can be maximised. For example, we might have a screen in front of somebody that can take a selfie and use that information to be able to check their pulse, for example, just by looking at their face. So that’s the kind of thing that we want to do without any kind of input. We just get decent outputs that are useful and timely. PCL Heath is developing solutions like these already.
How do you actually implement technology tools for those with dementia?
The great conundrum is how we go about doing that. In my experience, people can learn relatively small things, if it’s regularly repeated. But if they’ve got dementia at any stage it is quite hard for them to learn how to use new things, so it has to be as familiar as possible. It might be a variation on something familiar but it has to be something that they know about. So, when we designed the Dorothy app we used images similar to what they’d see in front of them anyway. And we are currently changing the portrait so that, let’s say you’re not available at the weekend, it might be a brother taking over the care, so the brother’s portrait might pop up.
The icons are designed for people who have to see a cortical atrophy, which is a structural change in the brain that makes it difficult to distinguish letters, almost like an organic version of dyslexia. And so it’s designed around that need and personalised. I don’t think you’ll be getting somebody to learn how to use a new phone but you might be able to do some passive monitoring. You might be able to add some kind of monitoring to what they already have and what they already know about such as AR glasses that look like glasses and feel like glasses. Only then will we start thinking about using AR with dementia because otherwise it would be too confusing. It’s about integrating into someone’s life and whether the tech is widely available for people to use.
What do you think are the big game changers, what is the revolutionary vision, where is the blue sky thinking?
I think the ones that will really help are the ones that use AI intelligently. So they’re the ones that, let’s say, look at someone’s markers that aren’t necessarily blood markers but might be their movements. It might be doing X, Y, Z, to make a prediction on the likelihood that something might be wrong and check up on it. Half of the huge numbers of people who died during the first wave of COVID did so because the delirium that they had was picked up too late, so that they just became unwell and passed away. If you look at people who were the same age but didn’t have dementia, they generally didn’t die. So it’s about being able to know when somebody is in pain. A really nice example is called pain check. They use AI to look at people’s facial expressions to look for pain. And if you know there’s pain, then you know there’s something to look for, there’s something to treat. Those kinds of companies are probably the future. I think in terms of adoption, the radar based solutions will probably do very well because it’s very simple to set up and very simple to implement. There will be a lot of focus on looking after carers and looking after systems that look after people because the cost is just so high to society. It’s not a sustainable model.
There are definitely technological advances. There are also definitely non-technological things that we can do now that are cost effective. We started that with patients who have more needs in terms of assisted living and getting them to be more socially interactive. We could see the progression of dementia somewhat slowed down. Cognitive decline during COVID was disastrous, mostly because no one could leave their room. So you have people just kind of sitting in a prison, pretty much, getting more depressed and having a much more rapid decline.
What are the little things we could do now with the existing technology we already have?
As many people have mentioned, it’s about interactivity. Ultimately it’s about music, dance, physical activity and if we can find any other way of increasing people’s interactivity and exercise. Being closer to somebody via technology, even if you’re physically far away, those are the things that will be really helpful in the future. Think about the person, and then tailor it to them. The best innovations are often the simplest ones.
Join us in the Healthy Ageing Room for our next event on Clubhouse on 24 June at 6–7pm GMT where we will be examining ‘Robotics and Healthy Ageing’ with Juan Cabrera: https://www.clubhouse.com/event/P0Bg0wpw
If you’d like to see a glimpse of the future and request a demo of PCL Health’s remote monitoring platform, contact us to book a time.
For more about Dr Samir Shah, find his profile on Linked in.