On 10 June, PCL Health spoke with Dr Samir Shah about the role of technology in managing, preventing and coping with dementia as a part of the drive for healthy ageing for all. This was part of the bi-weekly Healthy Aging series on Clubhouse.
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 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 responsible 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. In addition, 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. Unfortunately, most people don’t realise this. Within ten years, care costs will double, and within 30 years, they will triple. That’s $3 trillion worldwide, so it’s a massive ticking time bomb that not only affects the people that have dementia but also impacts the whole healthcare system across the globe.
Looking at carers, they have a 50% depression rate that requires intensive medical care. 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?
I recently worked on a short film with one of my friends, a former BBC director. She wanted to make a work based on her father’s experiences. 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 excellent 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 caring for dementia patients that were important to highlight in our multicultural 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 severely from confusion caused by dementia.
It was put together so that somebody with dementia could still read it. We felt that many 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.
Even though we were doing basic stuff, the nice thing was that the people using it were able to find their 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 attracted me to the project was that it could integrate with patients’ real lives.
If you think about how monitoring happens, it might involve putting a new device, like a watch, on a patient. Still, those in later stages of dementia won’t always tolerate putting something new on their bodies or will get very stressed by introducing new things.
Being able instead to 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 you can do when you’re monitoring somebody is to stop things before they get worse, so you want them to tell people their needs. So 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 benefits carers and reduces their stress and depression as it puts them more back into control of the caring process.
Critical Stages Of Dementia
We first have to start by saying that everybody is an individual. Even in the recognised stages of dementia, there is fluidity, and people can move in and out of different stages. In the USA and other places, you’ll see the seven stages. We use a simplified set of 3 stages in the UK: mild, moderate, and severe. Severe 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 support.
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.
You might find that because people are very individual and 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 challenging to say what stage a patient is in, but what you can say is that the earlier we identify dementia, the more we can do for people. So, for example, we can give the proper medication. We can put in suitable support systems. We can make sure things don’t go downhill as quickly as they might.
So, for example, we could stop somebody from becoming lost because we’ve already put the items in place to prevent them from becoming vulnerable at that time.
It’s also important to remember that dementia is not one condition. It’s an umbrella term for various conditions, including Alzheimer’s, Parkinson’s and Lewy Body dementia. Lewy Body and Parkinson’s dementia are cousins of each other. Somebody with Parkinson’s has a higher chance of getting a form of dementia. It’s the same disease process but in a different part of the brain, if you like.
Measures To Mitigate Stages Of Dementia
The first thing you should do is get the power of attorney because one never knows what will happen tomorrow. The next thing will be recording and sharing your favourite songs because things like songs, smell, and environment have a natural 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 most significant part of that 40% is hearing. So if you have hearing problems in midlife and don’t get a hearing aid, that’s 10% of your entire risk of getting dementia.
The other vital parts include smoking and socialisation — you must socialise and keep talking to people and try to avoid loneliness — all these things are 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 you 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 pretty early on, you’re still able to say what you want. Make sure you sort out a power of attorney.
It’s never an excellent time to think about this, but think about the end of life care planning because you might or might not want a picture of your dog next to you when you’re in a hospital, or you might not want resuscitation, or you may want other specific things to happen when you become incapacitated. So it would help if you spoke 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 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 person living with dementia 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 we might. They won’t tell you they’ve got hurt, but there might be behavioural impacts, so it might be complicated for people to speak about that pain, but they might scream, they might shout, they might become very agitated.
So make sure to get regular checkups by the general practitioner 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 involves looking at the whole person. These are all simple things that can help slow the progress of dementia.