Podcast – Dr Sarah Kate Smith, Brain Health & Dementia Prevention

Voice Over:

The Minds in Motion Podcast from Dementia Researcher in association with the NIHR, Applied Research Collaborations and Alzheimer's Society highlighting exciting new research and the work of the Dem Comm Fellows.

Trevor Salomon:

Hello and welcome to another episode of the Minds in Motion podcast from Dementia Researcher. Sadly, this is the last in the series, but today we complete the circle and welcome back the host from the first show, Dr. Sarah Kate Smith, Dem Comm fellow from the University of Manchester and the NIHR Applied Research Collaborations Greater Manchester. We're going to learn about her work on brain health, dementia prevention and get a few career tips along the way.

Hello, I'm Trevor Salomon. I'm an Alzheimer's Society volunteer and campaigner, and I'm a carer for my wife Yvonne, who was diagnosed with young onset Alzheimer's at the age of 56 in 2013, and she's been living and very well looked after in a care home for the last five-and-a-half years. It's a pleasure to be sitting alongside the brilliant Dr. Pippa Collins, who is back to take her turn on the co-host chair.

Dr Pippa Collins:

Well, thank you very much Trevor for calling me brilliant, because no one's ever done that before. I'm Pippa Collins. I'm a clinical academic, and so I think I'm slightly unusual in the Dem Comm communities. I balance a clinical career as an advanced clinical practitioner where I work in people's homes, managing people who have got dementia or frailty and who've become very unwell. And I'm also a dementia community fellow as everyone else is. So, I'm very excited about being on this Minds and Matter podcast where we are also going to meet NIHR Applied Research Collaboration, Alzheimer's Society, Dementia community fellow, Sarah Smith, who's going to highlight her important work and contributions and the brilliant work that she's delivering through this unique fellowship. But that's enough from us. Let's get the show on the road and let's meet Sarah.

Dr Sarah Kate Smith:

Hi everyone. My name's Sarah and I'm, as we've said, a dementia research fellow at the University of Manchester. So, I have a background in psychology and a PhD in health services research from the University of Sheffield. My PhD focused on creative methodologies to enable people living with dementia and their care partners to engage in research in ways that are appropriate and accessible to them, specifically by promoting the use of digital technologies that are known to be under-used by these populations. That's my past experience and past work.

Trevor Salomon:

And what about your current research then?

Dr Sarah Kate Smith:

My current research is looking at brain health and dementia prevention. We know that in the absence of a cure or a treatment for dementia currently, risk reduction remains the most promising approach to address the increasing prevalence of dementia in the future. So, there's a rapidly growing area of work that illustrates opportunities to substantially reduce the number of future cases of dementia by promoting brain healthy lifestyles and environments. In a similar vein to promoting physical health really, to protect from various long-term conditions in later life, brain health may ensure maintained cognitive function. If we consider a life course approach, it's never too early or never too late to consider dementia prevention. So, the life course has been defined by three stages of risk. Early life is younger than 45 years, mid-life 45 to 65 years and later life over 65 years.

So, my current research focuses on mid-life as a window of opportunity to promote healthier lifestyles and to improve health status in older age. This is because evidence indicates that intervention should focus on mid-life implementation as this is the period when neurodegeneration may begin. And the risk factor under consideration in my current work is physical inactivity. As we know, physical activity tends to decline with age, and there is some evidence to suggest that lower levels of physical activity are associated with an increased incidence of dementia. So, addressing physical activity levels as one specific factor in mid-life does have potential as the risk is shared amongst all the dementias. It's not just Alzheimer's specific like so many interventions can be. That's my current work at the moment.

Trevor Salomon:

You mentioned physical inactivity. I think those are the words you used, but what do you see as the key challenges in implementing dementia prevention strategies and how does your research address these?

Dr Sarah Kate Smith:

Trevor, there are so many challenges, and we are just at the beginning, I think, of dementia prevention, research, and strategies to overcome these challenges. It's the unknown. It's still the unknown and we can't possibly predict what's coming. What we need to do is to stop waiting until people reach crisis point in their journey, by trying to equip people earlier in life with the knowledge and the tools and that they may empower them. So, thinking about physical activity alone, conclusive evidence about the preventative effects of physical activity on dementia incidence is actually quite scarce due to small sample sizes and short intervention periods. So, of these trials as well as the particular lengthy follow-ups required to obviously assess change. So, the key challenges we have are the current evidence is focused on observational studies and cohort studies. So, we don't have any evidence from randomised control trials that can follow people really effectively over time.

Although encouraging the observational and cohort studies, the evidence is not based obviously on intervention studies. So, the second issue is physical activity is really complex to measure accurately because it's also quite subjective. It's not defined very well. So, it's a challenge to determine to what extent physical activity may reduce dementia risk given the variation in people, their histories, their lifestyle, their individual differences. How physically active are they already? How physically active have they been over their life course? Any existing long-term conditions these people may have, their environments, how they live, et cetera. And of course, the type of activity, that's also really hard to define: its intensity, its duration, how regular you do it. So, all these would have to be controlled for, and the controls would need to be precise, of course.

There's huge difficulty conducting randomised control trials, like I said, for risk and protective factors. It may take decades to show their effects and in which so many other considerations may be controlled for. And decades in a randomised control trial is expensive. They don't exist because how expensive and how much funding you would need to do that.

We feel another challenge is that maybe instead of calling it, thinking about dementia prevention, we may start to think more about risk reduction and brain health. And then dementia prevention programmes cannot live up to that promise and it can be quite distracting, I think, that people can believe that they can prevent dementia in a programme of research.

Trevor Salomon:

I'm glad you said that because I've been to a number of conferences recently where the word prevention has come up and most of us who unfortunately have embraced this world of dementia, we know there is nothing currently that you can do to prevent it. And I have a problem with that word prevent. So, defer, words like defer and some of the words you just used are much more appropriate because you can deliver on deferring, but you can't deliver on preventing.

Dr Pippa Collins:

And it starts to set realistic expectations amongst us and the general public.

Dr Sarah Kate Smith:

Absolutely. And I think reduction, brain health, all these things are going to be much more accessible to the majority. And also, the final challenge is how we motivate people to invest in brain healthy behaviours when any benefits could be decades away. So many surveys and people have said, "It won't happen to me. Oh, there's no dementia in my family." And that's not ignorance, it's just they're going on experience and what people, and probably a lack of knowledge when it comes to dementia and who can get it and what have you. So yes, lots of challenges Trevor.

Trevor Salomon:

I know. I know. That's why we're having the conversation.

Dr Sarah Kate Smith:

Yes.

Trevor Salomon:

If there were no challenges, it'd be pretty boring, wouldn't it for this conversation?

Dr Sarah Kate Smith:

Yes, and we would have a cure and we'd all be preventing dementia as we lived.

Trevor Salomon:

As all the CEOs of dementia charities say, they look forward to the day when they won't need to have a job. So, I get it. I get it.

Dr Sarah Kate Smith:

Yeah, there's so much to do.

Dr Pippa Collins:

Can I ask a question, Sarah? So, I'm, of course, going to go completely off-piste from our preparation and ask you a question because I'm very interested in physical activity. My background, as you probably know, is as a physiotherapist, and there seems to be a meeting of minds in the fact that we're beginning to recognise that exercise is good for our hearts. We do recognise that exercise is good for our hearts. We've thoroughly got that message across as a population. We know it's good for our lungs. We haven't got that across yet, and we know it's good for our mental health. We know it's good for our joints, and those three messages haven't really come across. We also know it's good for our brain health. Do you see in the future that we'll be linking up those factors more commonly because we have populations who are very often with multiple illnesses and who physical exercise is definitely the best treatment strategy, and yet as a population, we seem to have completely not taken on that message apart from cardiac health?

Dr Sarah Kate Smith:

I think that it almost feels like dementia prevention is secondary in those. We know physical activity can help you lose weight. We know that it can reduce the incidence of diabetes and heart disease. So yes, absolutely 100% that there's so much research around that. The brain health aspect is secondary at the moment, definitely.

Dr Pippa Collins:

Do you see a role in your research for using the smart technology, which I think is a particularly relevant issue at the moment as the government seems to be talking about rolling out smart Apple watches type things to the general population? Do you see that coming into your research?

Dr Sarah Kate Smith:

Yes, potentially. It's not something that we are writing about at the moment, but pedometers and all those ways of measuring physical activity are really essential. But we have to define the physical activity first because different people measuring different ways of being physically active isn't very easy to come together in a big trial. So absolutely, ICTs of many descriptions have a huge part to play in the NHS in general, but in prevention research for sure. But it has to be an overarching approach rather than many, many different apps. And as you know, there's a hundred apps that will do, or more, health apps and things that will, but not everyone's using the same thing. And of course, as people get older, there are going to be some challenges with access to the apps and access to Wi-Fi, and that's general accessibility with ICTs can be a further challenge, certainly for older populations.

Trevor Salomon:

What role do you see public and patient involvement playing in your research and how has it shaped your findings, I wonder?

Dr Sarah Kate Smith:

Trevor, that's a great question. I think I've been involving people living with dementia and care partners in my research as co-designers, collaborators, co-researchers, since I started in 2011. And I just can't imagine developing or designing an intervention without involving the people they're intended for. It's counterintuitive, I think. If you involve people living with dementia in all aspects of the design and delivery of an intervention, of course it increases accessibility and the appropriateness and ultimately access and uptake will be increased. It's a no-brainer. I think if I tried to develop an intervention without the input of people living with dementia and care partners, it would be based on my assumptions and my experiences. I don't have dementia yet. And so those experiences would be irrelevant and by association so would the interventions.

So, I think it's essential and we shouldn't be doing research without that input, absolutely, or that co-design and collaboration. And I think one of the most important aspects of this current research around the brain health and dementia prevention is ensuring it's ethical. And around those words that we were talking about, proportioning blame is an issue, and it's the most crucial point here is to avoid that in prevention research because-

Trevor Salomon:

Sorry, what do you mean by that?

Dr Sarah Kate Smith:

... So, inferring that people might, if they had have done more exercise, they might not have got dementia. So just by inferring that, not that we would ever say that because it's not true but inferring that here's what you should have done. And yes, that ethically and morally would not be acceptable, of course. So, I think PPI involvement is crucial because people living with dementia and care partners can say, "No, that makes me feel awkward, vulnerable. That it is my fault." So that would be an example of where we would absolutely have to engage at PPI and really follow their lead.

Dr Pippa Collins:

So, what do you think are the most promising advancements in brain health and dementia prevention over the next decade that we're going to see?

Dr Sarah Kate Smith:

Well, this alludes, doesn't it to what you've asked, Pippa, as well. And I think, again, without a crystal ball, it's a real challenge. It's a difficult one. So, as we know, dementia is not an inevitable part of ageing. And there are numerous risk factors with dementia that are fixed and not modifiable. So, for the individual alone, and that's their age and their environment and their genetics, we can't change those. These are fixed. So nevertheless, obviously recent evidence from the Lancet Commission that we all know about, suggests that up to 40% of cases could be prevented or delayed further if the focus was given to those risk factors that were modifiable.

And they've identified quite a number of these risk factors, which is a great starting point. What we look to in 10 years time is impossible to say because there will be, we hope there will be some more intervention and some more drug intervention by that stage anyway. But we need to be cautious because predicting that 40% of case dementia incidents could be prevented is misleading because we would all have to address all the risks all the time, the whole population, for that 40% to be reached.

That's an issue. And obviously that's not going to happen. So, it's exciting to read about, but actually the reality, it would be a lot less than 40%. So ultimately though prevention is the most promising approach to decrease dementia incidents in the future, but it also just takes time to yield results, which can be frustrating. But if we don't start now, we'll be saying the same thing in 20 years. So, in 10 years time, we'd like to think that we will have really strong evidence from RCTs that suggest physical activity, in this intensity, with this duration, and this will have a positive effect on cognition. But that's the hope. But I might be retiring by then.

Trevor Salomon:

You mentioned 10 years and 20 years there. So how do you approach studying the long-term effect of interventions designed to maintain or enhance brain health then?

Dr Sarah Kate Smith:

Yeah, and it is a real issue because it is the biggest challenge in prevention research is the long-term effects and it's going to require long-term follow-ups which we've already established, are expensive and unlikely to get funded. It's been suggested that future studies assessing midlife and dementia require a follow-up of a minimum of 20 years. But unless a lab has a team of people that keep getting replaced and will keep taking up this project, I've never known a project to last 20 years, I think it's a real issue. And this is why there's been so, so many observational studies, and they will go two to three years or maybe three to five at a push. But again, if you're midlife and you are looking at dementia incidents or effect of change over five years, it's potentially unlikely that you will see any change in five years.

So, what they do in the absence of funding to do anything like that is recommend what people should be doing. And as adults with normal cognition should aim to reduce their risk of cognitive decline through keeping cognitively, physically, socially active in midlife through to later life. And it's thought that this sustained exercise in mid-life and possibly later life protects from dementia perhaps through, like we were saying earlier, decreasing obesity, diabetes, and cardiovascular disease, but what, when and for how long and to whom needs to be established. And that's where we're stuck really.

Trevor Salomon:

I can imagine, I'm going to play devil's advocate in some respects here, I can imagine people onboarding all the brain health advice today that they're given, fast-forward 10 or 20 years, they still get dementia and they'll say, "I did everything you told me to do and I've still got dementia." And that's the problem with dementia, isn't it?

Dr Sarah Kate Smith:

It is. And we don't know, and that's it. We don't know who, when, why or what. People could have never smoked a cigarette in their life and get lung cancer, and we know all these things. It's about reducing risk, I think, more than eliminating risk. I think we have to give ourselves the best possible chance. And since starting this research, I do. I have become more physically, I am just the advertiser's dream, aren't I? I have become more physically active and I'm thinking I'm doing my best, I'm doing my best. But actually, my dad has just died from Alzheimer's, and my mum is really on the last part of her journey with Alzheimer's. So, if that's the case, it's not looking great for me, but it doesn't stop me trying.

Trevor Salomon:

I'm retired and in terms of using my brain, I'm extremely active because I don't want to vegetate. But I don't think of it in the context of not getting dementia. I just think overall to be healthier and to be more involved in everything going on around me is a better way to approach my retirement than doing nothing at all. And if it staves off dementia, while that may be by chance, but I don't think about it. Does that make sense to you?

Dr Sarah Kate Smith:

Yeah, absolutely. And I think that's a great ethos. And at the moment, and that's the thing from a very privileged position, isn't it? And that's the beauty of you, Trevor, is that you're so active and so engaged in advocating and everything that is it, are you staving off dementia or is it just because you're ...? Yes, exactly.

Trevor Salomon:

No idea.

Dr Sarah Kate Smith:

You don't know.

Trevor Salomon:

I have no idea. And I'm not going to think about it.

Dr Sarah Kate Smith:

No, no. And that's the beauty of it. It's inevitable. That's the thing. I'm thinking now I'm going to start learning a new language because that's the way forward for me to not get dementia. But maybe I'll just get dementia in Spain instead of here because I'll be able to speak Spanish.

Dr Pippa Collins:

So, before we move on to talk a little bit more about you rather your research, I would actually like to hear, Sarah, about any other projects you're working on.

Dr Sarah Kate Smith:

Well, actually we have got a really interesting project that we have just tried to get funding for. Hopefully, we'll find out soon. This is exciting now. And it is very much around what I'm doing around brain health. So, we have in Greater Manchester, a brain health clinic. This is a newly developed initiative that is around, it is different from the memory services. It's before the memory services. People get referred to memory services from the GP. So, brain health clinics come in between the GP and the memory services, and often for people who are younger. They are looking at people who are experiencing some memory challenges but have no diagnosis as yet.

So, there is all kinds of opportunity there for tests and for people to be followed and monitored over time should they agree. So, the brain health clinic in Greater Manchester, there is also an issue around ethnic minorities. Ethnic minorities tend not to access services in the same ways as other populations. So, we are looking at ethnic minorities and the potential of brain health clinics to improve health outcomes of ethnic minorities in particular. And that's because certain ethnic minorities are at higher risk of dementia such as South Asian, people who are South Asian and Black African and Caribbean communities.

So, we also need to look at how a careful consideration of the characteristics and needs of minoritized ethnic populations and why they're not accessing services and if the services are just not accessible to them or they choose not to have a diagnosis or to be in the system that way. So, this project is looking at how we might map the brain health clinics across the country. There isn't a huge amount of them, and it is a postcode lottery. So, the better funded cities tend to have the brain health clinics. So, we are going to map the people attending the brain health clinics across the country and see who is going and who isn't going and why not. This will be a survey.

And then once we have the survey details, we will then talk to stakeholders and from ethnic minority groups to decide whether, or to determine really, whether this is something that we can develop further as in brain health clinics, just to make sure that we are becoming more equitable in our access to these things. And it's not just the white middle class people who have memory problems that are accessing services. So that's the current proposal that's in. It's not funded yet. So, we have kept our fingers crossed for that one and we'll see where that goes.

Trevor Salomon:

I mean, that sounds really interesting, and I wish we had a lot more time today to explore it, but it sounds like it could be the subject of another podcast some other day. But unfortunately, in the interests of time, we have to move on. And so, there are some speedy career questions coming your way and we hope it will help others thinking about working in this field that you could share some of what you've learned from across your career and through the Dem Comm programme.

So, Sarah, are you ready? Remember short answers only. What motivated you to pursue a career in dementia prevention research?

Dr Sarah Kate Smith:

Trevor, simple answer. I applied for the job and that's what got me there. So fortunately, I'm finding it very interesting.

Dr Pippa Collins:

Sarah, I'd like to ask you this, what's the most valuable lesson that you've learned as a researcher?

Dr Sarah Kate Smith:

I think that it's I'm a people person and I think I always have been, but now I'm in a job where I feel that I can really engage with the best part of me as well, because all I do, or hopefully all I do is work with people. And I'm not a big fan of the sitting behind a desk part of the job. I like going out there and working with people jobs. So that's definitely valuable to me.

Trevor Salomon:

And have there been any pivotal experiences or challenges that shaped your approach, notwithstanding the response you just gave?

Dr Sarah Kate Smith:

I think there's been many. I think there's a certain type of resilience to being a researcher. I think we have to be prepared to adapt. I think we said earlier about my interest being broad. It's not always through choice. It's about going where the jobs are. So, to be able to broaden the interest means you can fit in more places, I think. Ultimately you go where the job is and that's the reality of it.

Dr Pippa Collins:

Yeah, that's really interesting. That's certainly a story that I've heard from a number of our dementia fellows that the short-term contracts mean that actually, it's hard to plan for the future and it is very much looking for the next opportunity. But can I also ask you, what is the proudest moment of your research career so far? Because I know it's been a very wide and varied career, so what's your proudest moment?

Dr Sarah Kate Smith:

I think getting the PhD and I'm old and tired-

Dr Pippa Collins:

I don't think that's particularly true, Sarah.

Dr Sarah Kate Smith:

I think it just wore me out and I think in the best sense. So, when I got it, it was the biggest, apart from having my kids, I think it was the biggest achievement. Yes, definitely. And I think that's my third child, my PhD. That's how it feels.

Dr Pippa Collins:

Having done one as well, I do know what you mean. It's a very intense experience.

Trevor Salomon:

It's despite being old and knackered, your words not mine, how do you stay motivated and balance competing priorities in your research work then?

Dr Sarah Kate Smith:

Do you know? I am self-motivated. It's one of my skills, I think. And I think when I was young before the PhD, I did an open university degree in psychology when my little boy was born, my last one. So, he was six months old, and I studied part-time while he was before school age so that I could change my life when he went to school and get a different job. So, it was studying when he went to bed and slept. So, I think it's that self-motivation, I think it's really helped, and it still helps because it's only down to me, no one else is going to do this for me. I think it's that self-motivation that is key.

Dr Pippa Collins:

That is a wonderful definition of self-motivation, actually getting on with studying when you're absolutely shattered with a new child.

Trevor Salomon:

Yeah. Isn't it just.

Dr Pippa Collins:

Yeah. That is amazing, Sarah, congratulations and well done. Okay, we're getting towards the end now. And I have a final question. It's a fun question, Sarah. So, if you could magically acquire any skill or perhaps a superpower to help with your research, what would it be and how would you use it?

Dr Sarah Kate Smith:

Well, I think Olivia said the best one in the last podcast, and she said to clone herself. I think that would be great, to have a few of me. But in the absence of that one now, I think unlimited funding would be great.

Dr Pippa Collins:

What about a permanent contract?

Dr Sarah Kate Smith:

A permanent contract, and this is a superpower, a permanent contract. That would be great. And just to be able to be the master of my own universe, I would really like that.

Dr Pippa Collins:

Well, that sounds like it could feasibly be achievable in the future.

Dr Sarah Kate Smith:

Don't you think?

Dr Pippa Collins:

I'm sure you're master of some parts of your universe.

Trevor Salomon:

I love your response. If I were to tell my friends I wished I could be cloned, they would say, "Oh, for God's sake, no. Please don't."

Dr Sarah Kate Smith:

Ones enough.

Trevor Salomon:

Yeah, one's more than enough they'd probably say. But on the funding, who could dispute that? I think the answer, absolutely nobody. Well, thanks for that response. I'm afraid that's all we have time for today, and sadly, all we have time for this entire season. If you just can't get enough of this topic, visit the Dementia Researcher website where you'll find a full transcript and biographies on all of us. With more than 50 researchers working in the Dem Comm programme we've so many people to talk to. So, keep an eye on the Dementia Researcher website and stay tuned for season three. But for now, I'd like to thank our incredible guest, Dr. Sarah Kate Smith. I'm Trevor Salomon.

Dr Pippa Collins:

And I'm Pippa Collins. And you've been listening to the Dementia Researcher Podcast.

Trevor Salomon:

Goodbye.

Dr Pippa Collins:

Bye-bye.

Voice Over:

You've been listening to the Minds in Motion podcast from Dementia Researcher in association with the NIHR Applied Research Collaborations and Alzheimer's Society. To learn more about the Dem Comm programme and to get all the support you need, visit dementiaresearcher.nihr.ac.uk and don't forget to like and subscribe.