Problems Worth Solving
Technology doesn’t transform services. People do.
Problems Worth Solving brings you conversations with the leaders, practitioners, and radical thinkers reshaping health, care and support services. It's hosted by Sam Menter, co-founder of Healthia (www.healthia.services).
From transformation and AI to prevention and human-centred design, each episode uncovers the ideas and experiences behind lasting change.
Guests include NHS directors, policy shapers, entrepreneurs, clinicians, and designers — all united by a drive to solve complex problems.
Listen if you would like to understand how health systems can evolve to meet today’s pressures and tomorrow’s possibilities.
Problems Worth Solving
Dr Ross Dunne and Chris Larkin: Reimagining dementia diagnosis
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Dementia is the UK's biggest killer. Yet around a third of people living with it don't have a diagnosis.
And we're still largely using services designed for a time when there was much less we could do about the condition.
That's beginning to change.
The new Manchester Brain Health Centre is bringing together earlier diagnosis, advanced testing, prevention and personalised support in a very different model of care.
And one of the most interesting things is how even changing the language can make a difference.
Ask people whether they think they can reduce their risk of dementia, and many will say no. Ask whether they can improve their brain health, and they're much more likely to say yes.
In this episode I speak to Dr Ross Dunne, one of the clinicians behind the Manchester centre, and Chris Larkin from Alzheimer's Society, which is helping lead the initiative.
We explored what's wrong with dementia diagnosis today, how the Manchester team is redesigning the experience, and what it would take to bring this approach to the wider NHS.
The science is changing. The challenge now is to redesign services to make the most of what's becoming possible.
Problems Worth Solving is brought to you by Healthia, the collaborative service design consultancy for transformation in health, care and public services.
Find out more about our work at healthia.services.
Dementia And The Diagnosis Gap
SamDementia is the UK's biggest killer. Yet around a third of people living with it don't have a diagnosis. And for many who do, that diagnosis came too late. Historically, memory clinics have focused on diagnosing dementia once it's begun to affect people's independence. But advances in diagnosis, treatment, and prevention mean we're increasingly able to identify some of the diseases that cause dementia much earlier. Even the language we use makes a difference. Ask people whether they think they can reduce their risk of dementia, and many will say no. Ask whether they can improve their brain health, and they're much more likely to say yes. That shift in thinking is part of a much bigger change taking place in Manchester, where Alzheimer's Society, NHS clinicians and researchers have come together to rethink how people are diagnosed, supported, and help to reduce their risk. For individuals and their families, that could mean earlier answers, better support, and more opportunities to take control of their future. The science is changing. The challenge now is to redesign services to make the most of what's becoming possible.
Why Diagnosis Unlocks Support
SamHello, this is Problems Worth Solving, the podcast where we meet people transforming health and care through human-centred design and digital innovation. I'm Sam Menter, founder and managing director at Healthier, the Collaborative Service Design Consultancy. If you enjoy listening, you can subscribe to this podcast and the accompanying newsletter at healthier.services. So today I'm joined by Dr. Ross Dunn, Clinical Director at Greater Manchester Dementia Research Centre, whose pioneering work is helping redefine what earlier, more accurate dementia diagnosis could look like. And Chris Larkin from Alzheimer's Society, who leads the charity's work on transforming dementia diagnosis and support. Chris, if I could start with you, how would you describe the big problem you're working to solve?
SPEAKER_00So people might not realise that actually dementia is the UK's biggest killer, and it's one of, if not the greatest health and social care challenge of our time. There's about a million people across the UK living with dementia. A third of those, we believe, don't have a diagnosis. And because of how services currently diagnose people, too often, those diagnoses might not be accurate, and they're certainly not specific. So it's a bit of a travesty, and we wouldn't accept it for any other health condition, and yet that is the norm for people with dementia.
SamFor Alzheimer's society, why is diagnosis such an important issue?
SPEAKER_00We're really focused on diagnosis because it's the gateway to everything else. Without a diagnosis, you won't be able to access the treatments that are available. The advice and support that you might need, people can plan for the future and ultimately have more control. When people have seen or experienced changes, not knowing is far worse than knowing for most people. The opportunities that we're going to talk a bit about today and the developments are one reason why we're going to be really pushing to encourage the public to come forward when they are experiencing symptoms, but also really working hard to ensure that the healthcare system prioritizes making dementia services better.
SamRoss, I'd like to bring you in here. So from your perspective as a clinical director, what does this look like from inside the
What Memory Clinics Miss Today
Samsystem?
SPEAKER_01So if I give you a little bit of an illustration of what the landscape looks like across the UK, that might give you some context for what we're trying to do. If you go to a memory clinic, we know that about 70% of people who arrive into a UK memory clinic are at the dementia stage of disease. And dementia is this kind of 1920s term, really, which refers to a stage of disease when you're no longer able to do certain things in your daily living. And that that can vary a lot. So sometimes it's about not being able to use the computer or the microwave anymore. And sometimes people need more help dressing, washing, and preparing food. That stage of disease is a kind of final common pathway of lots of different diseases that can contribute to cognitive decline. Some of them are very prominent in the public mind, like Alzheimer's disease and vascular disease, where those others go unnoticed or unacknowledged, like Louis body disease, or the cognitive problems that go along with Parkinson's disease, for example. So if 70% of people are getting diagnosed at the dementia stage, the question is what's happening to the other 30% of people who turn up at UK memory clinics? Those people have what we call mild cognitive impairment. And it's a rather unfortunate term, a bit of a historical term, and it refers to the stage before you really have difficulties with activities of daily living. So mild cognitive impairment is this historical term that we've rather inherited. And I think it's often a bit like having a pain in your head for six months and then going to a neurologist and him telling you you have a headache. It's not extraordinarily useful to the patient to have this pseudo-technical term to describe what they're already talking about. So those people are currently not given an appropriate pathway to my mind. They go down the same diagnostic pathway that the people with more advanced disease go down. And that's one of the major problems we're trying to solve here. Number one, modernizing our language, modernizing what we do in terms of people with milder stages of disease. And I think that fits quite well with what the healthcare agenda is in the 21st century. We're trying to prevent as well as diagnose.
SamAnd what actually happens when someone presents with memory concerns today?
SPEAKER_01So usually they'll present to their GP, often with someone who knows them quite well, someone who loves them, who has shared their concerns or noted something is wrong. And they're referred into a UK memory assessment and treatment service. And these were set up in the early noughties, mid-2010s, that kind of range of time, in various stages of development. And they were, you know, the UK leads on a lot of things. And these were some of the first of their kind in the sense that they were dedicated to making a diagnosis of dementia when the person appeared. And it happens that that happens mostly in UK mental health trusts. And there's a historical reason for that. I said the UK leads on many things. Previously, people with dementia were often on the backwards of large psychiatric hospitals in the 60s and 70s. And with de-institutionalization came this desire to build a specialty around looking after people with dementia. And so the UK had some of the world's first geriatric psychiatry specialists actually treating people as they needed to be treated in the advanced stages of this disease. What that meant, though, was that when we set up these memory assessment and treatment services, they were all inside mental health trusts. And that meant that those trusts don't own scanners, they don't do many procedures. And so a very sociological model of dementia was built up where we fed into this assumption that the diagnosing at the dementia stage is fine and diagnosing earlier is harder. And this a little bit of therapeutic nihilism about why we would want to diagnose earlier when there's very little we can do.
SamAnd do you think there was just an acceptance that it was part of growing old?
SPEAKER_01Often that's the case. And it's certainly true that dementia is more common with aging, but so is heart disease and so is cancer. And I actually think that we've inherited some of the stigma from major mental illness that traveled with that, and that has held us back as well as the sort of infrastructure and history behind diagnosis in this country.
SamI'd like
Waiting, Delays, Then Falling Through
Samto talk a bit about what the experience is like today for someone going through that diagnosis process. Can you describe that journey and describe what the experience is like for someone pre-diagnosis and as they go through that diagnosis?
SPEAKER_01After the GP referral happens, people will often be seen by a nurse. They'll be assessed in terms of their risks. Are they so forgetful that they're leaving taps on, so forgetful that there's a fire risk in the home? And their history will be taken, their story will be told. And often they'll be given a test, a pen and paper test, to see objectively how cognitively impaired they are. Sometimes that's an easier test than would be useful earlier on in the disease. And about 50% of people in the UK get some kind of neuroimaging, of whom about 50% get a magnetic resonance image, an MRI brain scan. Some services are set up such that a consultant will see the patient. Some services are not set up like that at all. So it's quite possible to get a diagnosis without ever seeing a consultant. And the focus all along the way really is about social support and getting the older medications, things like donezil and rivastigamine, getting those prescribed in a timely manner, and then giving people post-diagnostic support. So at its best, it is a diagnostic service that provides social support for somebody who's really at a quite an impaired stage of disease. There's a huge variation in what services provide, and services are encouraged to do things as leanly as possible because many of them have very long waiting lists from six to sometimes 18 months.
SamAnd what are some of the biggest frustrations you hear from patients and from clinicians working in the services?
SPEAKER_01So, I mean, I worked in these services for many years, and the message from patients was about waiting. They had recognized there was a problem. There was a delay to get a GP appointment, there was a delay to get the first appointment for assessment, then another delay to get a scan, and then another and another until the diagnosis was finally made. So that was their frustration, and frankly, I shared their frustration knowing what I did about how the pathway could potentially be streamlined. And also I think there's a certain amount of frustration from my patients about I wish we'd known earlier, or I wish we'd not ignored things, or sometimes I wish the GP had referred us a bit earlier. And all of that is very understandable. One of the bigger frustrations in the latter years is about what happens next. People tend to fall out of the service after the medications have been prescribed. And whereas 20 years ago, geriatric psychiatrists in this country were commissioned to follow people up for the rest of their lives. That's not the case anymore. And people feel a little bit of a rug pull, I think, at the end of their diagnostic pathway. And why can diagnosis still take so long? I think services are set up in particular ways. COVID didn't help because all of our patients, or the vast majority of our patients, are older. A lot of services went to phone-based diagnosis or simply staff were reassigned. And that created a big surge that then needed to be seen. But also, our population's just aging. So while it's never been better to be 75, there are increasingly many 75-year-olds. And that means that within the population, there's there are more and more people living with cognitive impairment. That's just a demographic fact. And services haven't really evolved and haven't been developed or grown, and frankly, haven't been funded to meet that need.
SamCan you tell me a bit about the feedback that the society gets around lived experience from families and from patients around the condition?
SPEAKER_00Yeah, so as you would imagine, we hear from a lot of people every week about this, and there are a range of emotions, Sam, that people experience. Pre-diagnosis, I think quite often there is a lot of confusion, fear. As I touched on previously, people can be confused about what's going on because it it's not easy. And so people are wondering: is this stress? Is it ageing, as you said, a normal part of ageing, or is there something more serious? And as I also said, I think naturally dementia is a scary condition. So for some people, they will ignore the changes and the signs. And we do hear from family members who've noticed things and are calling us or talking to us about how they can convince, for want of a better phrase, or support their loved one to take action and go to get an appointment and hopefully get a diagnosis to explain what's going on. So before the diagnosis, there's a lot of that going on for people, and then unfortunately for most people, going through the diagnosis process is pretty painful now, not always, and not everywhere, but it's unusual to for people to have a very good experience of getting a dementia diagnosis in the UK because services are pretty fragmented, they're slow. So, as Ross said, people can spend months, if not years, getting a diagnosis. And that is clearly going to be emotionally pretty exhausting for people. I was talking to a couple probably six months ago or so, who it had taken them, I think, three or four attempts going back to their GP, saying no, something is going on before they got action taken and got referred in to the memory services and eventually did get a diagnosis.
SamWhat would you say are the are the things that the people you're supporting would most want changed about the process or the pathway?
SPEAKER_00They'd want it to be timely, easy to access. As Ross said, at the moment, for too many people, they'll get a diagnosis and then feel abandoned afterwards because there aren't many support services out there. People have to fight a lot of the time to get the support that they need. People should get a 12-month review when they have a diagnosis of dementia. Most don't. And if they do, it'll be a very limited, quick interaction, often with within primary care in some way. That's an ideal opportunity to make sure someone has a really comprehensive conversation, can talk through their experiences, what might be changing, and things could be put in place to support people much more effectively and proactively, but it just doesn't happen for most people and they're left to get on with it by themselves a lot of the time.
SamRoss, by the time someone gets to a point of diagnosis, what is a typical level of support they'll be needing from their family?
SPEAKER_01Some people are diagnosed at the stage of living in a care home, and they're only diagnosed when the dementia starts to take its toll on their physical health in terms of eating and drinking. And others are diagnosed even at the dementia stage where they're needing some prompting, they're needing some redirecting, things like that that are the beginnings of care, but not actually putting their loved ones in a carer position, so to speak. Whereas people who attend my clinic, I'm militant about saying these people don't have dementia, they don't have carers, they're independent, and you wouldn't know in a dinner party conversation that they had anything wrong with them often.
SamSo this sounds like it's much earlier. So this
Designing A One Stop Brain Clinic
Samis a cue to actually go on to talking about what it could look like instead. And you've been working to design the Manchester Brain Health Centre. Can you describe what this is, why you've created it and who it's designed for?
SPEAKER_01Yeah, so I'll tell you the story about how this developed. So, first of all, it was just about doing the right tests, the right cognitive tests that could, in fact, pick up the level of impairment that they were reporting. And I suppose that's a little bit about believing them when they say they have a symptom and going out of your way then to do a hard enough test to find that. And then what we did was we moved the scanning so that everybody gets an MRI scan, we move that to the front of the clinical experience. So people have that while they quote unquote wait for the clinic. And also because these people have agency in the disease and they're quite keen to be active in their own diagnosis, they are sent out a pre-assessment booklet. Instead of spending an extra hour in clinic going through a questionnaire which are quite stultified and rigid, we send out these sort of research grade questionnaires to people before clinic and they bring them to clinic, and we have a joke about you've done your homework or you haven't done your homework. So that means that all of the diagnostic activity really can take place in that single clinical sitting, if you like. And that was good. That lasted for about a year and a half. And then I started to get a little bit frustrated again that we weren't quite doing what we said we would do in terms of diagnosing people using the best available technologies. And in 2023, the best of best available technology was an analysis of the cerebrospinal fluid, so the fluid that surrounds the brain and the spinal cord, and carries these proteins that can be identified, particularly in Alzheimer's disease. So I went off and asked the local neurologists, would they be able to do this for us? And they said, of course, they said no, they're way too busy and they're they've they've a long waiting list themselves. So I decided to go off and get trained myself, having done maybe one or two lumbar punctures as a junior doctor in the emergency department. I did 20 under supervision until I felt comfortable doing it, and set up a service inside the mental health trust. And that was the first, I think, of its kind, certainly the first in the region where a psychiatrist was actually providing both the procedure and the diagnosis. That was a bit difficult to do inside a mental health trust. We had to pay a lot of attention to governance and people's concerns, but we did set it up with extremely tight governance. So that was where we were end of 2024. And the best thing to do in the NHS, if you want to innovate, is to do it and then apologize and try and win an award along the way so that you can cement what you've done. And we won a the Health Service Journal Modernizing Diagnostics Award. Um, we started working with industry because these were not commission tests, although they're mentioned in the NICE guidance. Very few places around the UK actually have them as part of the commission pathway. So we used some industry funding to keep going with the assays and keep going with that. And that was uh a project, a sort of a quality improvement project across four sites in the UK, led by the Dementia Platforms UK. And then we started to think about what was next. And really in Manchester, what was next was cardiovascular risk reduction. A brain health clinic is not just about diagnosis, it's about risk reduction and sort of comprehensive risk assessment, because we know quite a lot of the things that are risk factors for dementia later on. And so, what we want to do is to provide a really timely diagnosis, to do a comprehensive risk assessment, to develop with the patient a personalized risk reduction plan, and also to get these people into clinical trials, as you would in any other specialty in medicine.
SamYou talk a bit about the philosophy of brain health rather than dementia care. Can you expand on that a bit?
SPEAKER_01Yeah, so this is interesting. When you ask people whether they think they can reduce their risk of dementia, because of what we talked about, the stigma and the assumption that it comes with aging, they'll often say no, they don't really think they can reduce their risk of dementia. When you ask them the other question, which is do you think you can improve your brain health? Nearly all of them think they can improve their brain health because there's an association with the 40 years of public health messaging that's gone along, all the boring things doctors talk about, managing your lipids and reducing your blood pressure and all those kinds of things. So immediately you create an association with physical health that prevents people jumping to this sort of stigmatized conclusion. And one of the nice side effects is that actually by removing that sort of moniker, that 1920s term, you also reduce the stigma in some of the populations that are harder to reach. Immediately by changing the name to the brain health clinic and actually by moving it inside an acute hospital where we are now in the clinical research facility. Actually, my do not attend rates for my South Asian patients has fallen significantly because that stigma, that consciousness of going to a psychiatric hospital, that isn't there anymore. So this brain health movement, if you want to call it, that started really about 10 to 15 years ago, but it was accelerated by the publication of the Lancet Commission, which showed that about 40% of dementia was potentially preventable, and also by studies done in countries like Finland, which demonstrated that you could reduce people who are at risk, you could reduce their cognitive progression, you could reduce their cognitive decline if you intervened with physical health, cognitive training, and blood pressure control. And so the field started to change into one that was pretty frustrated and a bit of a Cinderella specialty into something that felt like you could really do some, do some good and start to change people's trajectories.
SamAnd have you been closely involving patients in the design of how this whole process works?
SPEAKER_01Yeah, I think I can say hand on heart that every change we've made has been at the insistence of our patients. So from the start, when people were saying, I wish we'd known about this five years ago, or we went to the GP five years ago, I've been conscious that actually people are noticing earlier than there is a service to provide. So maybe we should provide a pathway that's actually fit for purpose. And then people said that they didn't want to wait for an MRI scan and they didn't want to come back for three visits. So we moved that. People said that they would be willing to do some homework and we provided it for them if it meant a shorter clinic appointment. People have been involved in the sort of shape of the clinic and the time management in the clinic. And so every change we've made has really been in response to a net demand from patients that things, yeah, they're good, but they could be better.
SamSo if someone walked into a traditional memory clinic and then they walked into the Manchester Brain Health Center, what would they notice was different about the experience?
SPEAKER_01So I think what they would notice, first of all, is that they had been seen a bit quicker, probably. And that might seem small, but as we've mentioned, it's one of the main patient frustrations. They would also have had some information beforehand about what. Expect and they will have already had their scanned. So things have started already in terms of the diagnostic pathway. So they'll have a 30 to 35 minute cognitive test on which nobody scores 100%. But it allows me to discuss with them their strengths and weaknesses. So what we get out of that set of tests is a percentile score for their age. And that means there's nowhere to hide. You can't say, oh, doctor, I'm 84. What do you expect? In fact, I'm comparing you to other 84-year-olds. So I'd expect you to be in the average range. And this is where your strengths and weaknesses are. And the other thing that people have is we look at the scan together on a screen and we point out where there are changes. And before that, we educate people. So the overall ethos of the clinic is to really raise people up so that they become agents in their own diagnosis. They become that their autonomy is restored to them. Because one thing that is certain is that this set of diseases that eventually leads to dementia, it robs people of their autonomy. And what I never wanted to do was to have the clinical service I provide add to that, that it should reinforce their autonomy. It should be the chance now to make change, a chance to participate in research. And
Brain Health, Stigma, And Prevention
SPEAKER_01so the other main difference to most memory clinics, although there are many leading academic centers around the UK, is that in the same building up a flight of stairs, they can participate in a research study, anything from a clinical trial, sometimes a first-in-human trial, to an observational study. Some scanning or biomarker work that we're doing. So really what we've worked to do is to reduce the barrier between research and clinical practice. One of our main focuses now is on blood pressure control. So everybody who comes to the clinic now gets cardiovascular assessment from an advanced nurse practitioner, and we will ask for those to be rectified if we find people have high blood pressure. And 40% of people coming through the clinic have high blood pressure. What it does for people really is it kind of joins these things up. They wouldn't maybe have been aware that blood pressure was important for cognition, and they certainly wouldn't have been aware that hearing was important for cognition. So by by co-locating, by working together across institutes, what we've been able to do is provide really a coherent pathway for people at the earliest stages of these diseases.
SamChris, I'd like to switch back to you. Alzheimer's Society has been supporting this work. What convinced you that this wasn't simply another interesting pilot, but it was something with the potential to actually shape dementia services nationally?
SPEAKER_00Diagnosis is one of our strategic priorities. We've touched a lot on how poor the experience is and how bad the system is at the moment. And we believe that Manchester is one of, if not the, model that could really show how things can be done differently. And that's why we wanted to be involved. One of our big policy priorities is readying the NHS for new treatments. And again, the current dementia service pathway, the current memory services are not set up to provide people with the disease modifying therapies that we know are coming at a time that they'll benefit from it. We believe that the Manchester model is a model that will allow that to happen. We know at the moment those treatments aren't available on the NHS, but we do think it's a matter of when, not if, those treatments will be available because they're coming. They're in research trials at the moment. For us, it's really important that we share the learning from Manchester that we're really open to sharing that with other systems, other health and care systems, other regions who want to do something similar. Because for us, we think this is one of the first clinics of its type, but we absolutely think we we want to see this as something that's happening across the UK.
SamRoss, what's driving you? It can't be easy to change the way something's done that's been done in the same way for a long time.
SPEAKER_01No, no, it's not been easy, but it but it one bite at a time is how you do it. How do you boil the ocean? How do you eat an elephant one bite at a time? I think I started trying to make a small change, which was could we create a path week? Maybe we could just create a specialist clinic for people with earlier stage of the disease, knowing roughly where I wanted to get to, but not having any idea how I get there. And then I suppose I I react against slightly against the language we use to describe these things. There are no problems in the NHS, only challenges. And indeed, you would be you'd be thrown out of many meetings if you said there was a problem. But actually, I think that that's a problem in and of itself, because we don't bring a problem-solving approach to the things that face us. And a lot of the things we that face that face us as quote-unquote challenges really could be easily solved with the right approach. So I I've really I've harnessed a little bit of clinical anger about what the system was like and channeled that into problem solving at every stage. We can be doing better. We have the expertise and the evidence to do better. And what we really need to do is to not try and turn the tanker of the NHS, but to hive things off a little bit, do things in a little bit more of a specialist way, make the make the extra effort at this stage of disease. And that's what's happened in many other areas of medicine, I think.
SamAnd do you have a personal connection with the condition? Is that what's driven you into this space?
SPEAKER_01The reason for becoming a doctor was I was quite sick as a kid, right? And and I had a brilliant GP, the Eugene Swain in Dublin, who every time he told you what was wrong would show you a picture of it. He'd get down his medical encyclopedia and talk through the problem with you. And I suppose that's just I just thought that was normal for doctors that you would bring people along with you, that you'd educate as well as diagnose, that you'd raise people up.
SamChris, did you have a personal connection with the cause? Is that what pulled you into the Alzheimer's Society?
SPEAKER_00I think that the voluntary sector is able to support innovation and change in a way that can be very challenging just in the NHS on its own. And that that was one of the things that I was passionate about coming into this role. This project, which Ross and I have been collaborating on for a couple of years now, is the sort of thing where I think the voluntary sector can really help bring about change in services that are not giving people what they need right now.
SamAnd just that massive potential for impact. That's what's really exciting.
SPEAKER_00Absolutely. Absolutely. I think the impact of this development could be huge, clearly, for individuals, for the outcomes for people in terms of changing the trajectory of dementia and lessening the impact for people and their families, but also in terms of the system. And that's something we're keen to capture. Carrying on as things are without change in the NHS, the number of people with dementia is going to increase substantially over the coming years, and health and social care is already struggling to manage that demand with far too many people in AE and in hospital with a diagnosis of dementia, and that's not the best place for them. And lots of people ending up in care settings requiring big social care packages more quickly than they might have done because of the lack of support or the lack of intervention at an earlier stage. We think this approach is one thing that could shift the dial on that and have a big impact on the health and social care system in in years to come.
SamI'd like to take a moment to think about the future and some of the things that are upcoming in dementia care and diagnosis. Ross, it feels like we're reaching an inflection point. How different could dementia care look in five or ten years if some of these emerging treatments become more widely available?
SPEAKER_01So the 10-year view is that our aim is to make this a chronic treatable illness. We do have medications that are given by infusion that remove all of the amyloid from your brain, amyloid being the primary protein that builds up in Alzheimer's disease and leads to deterioration downstream. We also have, at an earlier stage of development, injectable drugs that can slow tau production, the next stage of development. If you don't have amyloid and you don't have tau, you don't have Alzheimer's disease. That sounds a little bit Pollyanna-ish in sci-fi. And I'm sure my scientific colleagues will be throwing things at this at the screen, could they see me? But we actually are at a significant turning point in treatment where the technology is caught up with treating diseases of the nervous system. The central nervous system is pretty inaccessible. It's this three-pound lump of jelly sitting between your ears. And it's quite difficult to get treatments in there. We've traveled this journey before in medicine. There's no, absolutely no reason we can't do it in the diseases that traditionally underlie dementia. And diagnostic technology has driven this. In September, we hope to launch the first access to blood biomarkers. These blood biomarkers will avoid people having lumbar punctures, and we will be able to give people a clearer, more timely diagnosis in a one-stop shop setting. So I'm very optimistic. It's really exciting now, in a way that I never really thought it would be. And it's really given us a massive injection of hope. The technological developments that have come
Blood Biomarkers, Home Testing, AI
SPEAKER_01along in the last particularly five years.
SamOne of the things you touched on there was the blood tests. And increasingly we're seeing healthcare coming closer to home. And one of the areas we've been working on at Healthier has been looking at home testing for various conditions and exploring how that could be integrated in the NHS app. How close do you think we are to a future where people can access aspects of their brain health from home? And what opportunities and risks do you see around this?
SPEAKER_01I see these things coming. There's some work on things like blood spot analysis for Alzheimer's diagnosis, so only a drop of blood being analyzed, albeit in a pretty centralized way. I guess I wouldn't be a fan of somebody being able to diagnose themselves with Alzheimer's disease without the appropriate wraparound. And I think this applies to all of those things, doesn't it? Making a diagnosis on the basis of a single blood test is not what I do. And making a diagnosis on a single test is never what any of us do. So when I do in clinic is I integrate the imaging with the cognitive test and the person's story, what I've found on the neurological exam, and I integrate that all with the test that is quote unquote definitive. This sometimes sounds like doctors trying to protect their profession against the app makers who are going to make us all redundant. But actually, I think nobody really wants to diagnose themselves with Alzheimer's at home. What we needed was something else, something that was going to empower people to make change in their life, for example. Adherence seems to be the magic pill, actually. So it's not about the one week of fasting or the one week of blood pressure control. It's about making sure those changes are sustained. And so I think that's that's more likely a role where technology will find a really useful niche.
SamAaron Powell We haven't talked about AI yet. We're the closing stages of the podcast. But it's impossible to have a conversation around technology and health at the moment without talking about AI in some context or another. Where do you think AI adds value in the diagnosis process and where should we be cautious about overpromising?
SPEAKER_01Aaron Powell Sometimes people will bring me an app, and of course, all you need to get it funded is to say artificial intelligence or machine learning. I'm a little bit unlucky in that I actually understand the mathematics behind the machine learning technologies. And sometimes people will tell me that they have a widget or an app that can tell me if somebody has dementia or not. Now I can do that in a four-minute conversation. That's not what we need as a profession. What we need is a disease-specific diagnosis as early as possible. And we need to know what's driving that diagnosis. So I approach it with a lot of literate skepticism because I've just seen it done badly a lot. But I also know that it can be done really well. And where it's done well, it's done well because it involved patients and clinicians from the get-go.
SamChris, if some of these clinical advances that we've been talking about become a reality, what does that mean for the wider dementia pathway? And how will support services need to evolve alongside diagnosis?
SPEAKER_00So we obviously thinking a lot about this at the Alzheimer's Society. Ross touched on this a little bit, but we think there's going to be potentially a widening inequality that might happen, particularly in the next 10 years, because as Ross said, most of the treatments are for Alzheimer's, which is the most common form of dementia. But other types of dementia, there just aren't the same amount of research trials taking place. So we're thinking about the fact that we're likely to have dementia-specific pathways, dementia-specific service offerings, because someone who has been diagnosed very early with prodrome on Alzheimer's is able to get disease-modifying therapies, will have a very different experience to somebody with another type of dementia where that just isn't a reality. Our services, just through this work with the Manchester team, we're moving from post-dementia diagnosis to pre-diagnosis, and that's quite a big shift. And we will have brain health advisors embedded into the team with Ross and the others in Manchester. They will be working with people on their risk reduction plan, really thinking about how we support people through motivational interviewing and behaviour change techniques to modify any risk factors possible. And I think, yeah, as Ross has said, the shift that these developments could make from dementia being a palliative condition to being a long-term condition. We're really thinking about how we adjust our approach, stay in touch with people who have been diagnosed earlier. But ultimately, I think for us, being embedded with Manchester and the team is so exciting because there's a lot we don't know. Over the next five to ten years, dementia diagnosis and treatment is going to change dramatically. We have ideas about what that might mean in terms of the type of support we need to offer, but we don't know for definite. But being integrated and embedded with the team means we're in the best possible place to develop that support offer, iterate it, see what works, ditch what doesn't work so well, and hopefully be able to best support people as dementia services and dementia pathways really do transform.
SamThe 10-year plan is quite serious about shifting towards prevention and earlier intervention. What would you like to see included for dementia?
SPEAKER_00At the moment, we are working with the Department of Health and Social Care or certainly sharing as much information with them as possible because in England they're developing a modern services framework for dementia and frailty. We are really keen that there are some ambitious targets in that. And we would want to see that, including a target around reducing deaths. We know that 40 to 45% of dementia cases globally could be prevented. We know there's a lot of modifiable risk factors that could be addressed, but we also want to see a real commitment to everybody being able to get an early and accurate diagnosis of what it is they're experiencing. Of course, we would be advocating for a model that could learn from the work that's happening in Manchester, but that's really important. I think we need to see much clearer guidelines for commissioners because
Inequality, Policy, And Reasons For Hope
SPEAKER_00at the moment it's very scarce. So it's highly variable across the UK in terms of how services are set up and delivered, but you have to have a little bit of sympathy for health and social care systems which have really got a very old dementia strategy. There isn't anything to really help them know what they should be investing in, and that has to change. But we know there's a scarcity of trained specialists in the NHS and dementia training for the social care workforce as well. And that's a again creates a poor experience for people and a commitment to making the data much better. So with new treatments and things like that, we're going to struggle to demonstrate that if we don't get a much stronger national approach to capturing and sharing data. And does that need to come from policymakers? I think a lot of it does if you're going to try and have consistency and look at actually how do you compare how effective and successful services are across England or across Northern Ireland and Wales as well? I think you do need to see a real commitment to that from government and the Department of Health and Social Care so that it translates through to local systems.
SamRoss, from your perspective, what would make the biggest difference to diagnosis services over the next five years?
SPEAKER_01I think undoubtedly there's a policy component, which is that we need to start taking this much more seriously than we have at a national level. And what has been considered good enough in the past is not good enough anymore. And it's not considered good enough by patients anymore. An awakening, I think, and a little bit of a growing consciousness in the minds of policymakers about what is possible and therefore what we should be aiming for. And Chris talked a little bit about that ambition. I think technologically the biggest change will be the blood biomarkers, there's no doubt about that. That will make a diagnosis or a rule out of Alzheimer's much more scalable, really, within the NHS. What I would say is that although we are only talking about Alzheimer's at the moment in terms of biomarkers and treatment, the same technology is potentially transferable. As I said, I'm very hopeful. I think that a policy change is the first change. And then if I reflect on my own experience, I suppose a little bit of freedom to operate for clinicians that really want to make a change. Sometimes when you work in the NHS, you feel a little bit supervised, notwithstanding the fact that you've been doing it for 25 years. And I suppose reflecting on what clinicians can offer, what patient input can offer. Because as I said, if you if you take a problem-solving approach, a lot of these problems are solvable. What are you most optimistic about? In the short term, I'm optimistic about changing the way we do the diagnosis of mild cognitive impairment, not just in my clinic, but nationally and across the four devolved nations. I think that's very doable. And I think that will have knock-on effects. In the long term, I'm really optimistic that we will find ways of significantly slowing all these diseases, give people back their 70s, and actually significantly compress the morbidity towards the end of life such that people live longer, better lives with better cognition from more of their third age, if you will.
SamI wish you'd met my granny. She had dementia through the end of her life, and it went on for quite a long time. So it's yeah, I can personally understand the impact it have. Yes.
SPEAKER_01Yeah. And we want to change that experience for the people who are caring as well. Dementia is not a disease that affects one person, it affects an entire family and often generations thereof. Yeah, no, there's no there's no lack of passion on this end, and everybody you meet has an experience and has a story. So that's I suppose that's part of what keeps me pointed in the right direction.
SamChris, what are you optimistic about?
SPEAKER_00Without wanting to copy Ross, but it's very similar, I think. The outside of society vision is for a world where dementia no longer devastates lives. And to be at a point where that does not feel like science fiction and beyond the realms of possibility is incredibly exciting. To think that we could be detecting diseases that cause dementia years before symptoms, to think that we might, with treatments and different interventions, kind of delay or prevent dementias. And when people do get a diagnosis, like Ross says, for it to be considered a long-term condition is incredible given how bad the experience is for so many people today who get a diagnosis or diagnosis of dementia. But I spend time with my colleagues in research, and obviously we're really passionate about this at the Outsome Society, and it isn't just a kind of pipe dream, it is something that we believe is entirely possible, and I think that is reason to be incredibly optimistic about the future.services.
