'This generation is on the cusp of changing dementia for good'

0:12Welcome to the latest Margin Notes podcast with me, FTAdvisor editor Simony Kiriakou. Regular listeners will remember a podcast I hosted back in 2023, which was published under the heading, This is the moment everything changed for Alzheimer's. It was a seminal and really exciting moment, marking the developments in diagnosis and treatments for Alzheimer's, which is one of the biggest killers globally and perhaps also the biggest thief. And today we're excited to have Dr Richard Oakley back with us in the studio. He is the Associate Director of Research and Innovation at Alzheimer's Society and plays a critical role in the development and implementation of the charity's research strategy.

0:54Now, last time, if you remember, our podcast was CPDable. It will also be this time around. We'll be discussing what has happened in the past couple of years, what challenges we still face, and listing different ways to make a difference to thousands upon thousands of families in the UK, thanks to the work of the Alzheimer's Society and the Insurance United Against Dementia campaign, and more on that later. But for now, welcome, Dr. Richard. Lovely to have you with us. Thank you so much for having me. Great. So let's go back quickly to what we talked about last time. You gave us some really positive news in 2023 that this would be the decade that everything changed for Alzheimer's.

1:33Could you remind us please what that really exciting news was? Yeah absolutely so what we've seen in the last couple of years was the first ever disease modifying treatments coming from research and coming into the clinic in certain guises so these are treatments that don't mask the symptoms of Alzheimer's disease which is the biggest cause of dementia about 60 % of cases of dementia caused by Alzheimer's disease and these treatments slowed down the progression and there were clinical trials had shown that data that by an average four to six months of slowing of progression of the disease giving people more time at home with loved ones more time doing kind of the hobbies activities they want to do so that was really exciting and those treatments were beginning to go through kind of the the regulatory processes to be approved for healthcare systems like the nhs and that's kind of where i left us last time fantastic yes thank you very much and it is very exciting and we've been reading news reports about these drugs that have been developed they're tested but we've kind of hit a little bit of a roadblock haven't we with the NHS saying it's too expensive could you talk to us a little bit about that roadblock?

2:42Yeah absolutely so yeah we're still on the path that I set out before but it's definitely a bumpy path it's going to have a few twists and turns in it and so the first one was these treatments were approved by the MHRA in the UK so this is an independent body saying whether the drugs are safe and effective and they determined they were safe and they were effective they are safe but they have side effects of course something called aria which is a swelling of the brain which can lead to some quite serious side effects and did leave uh leads to a few fatalities in some of the clinical trials and they are effective but moderately so so only a slowing of four to six months after that of course NICE in the UK have to have a look at all these drugs that are coming through and decide if they are cost effective enough for the NHS to use its resources towards them the NHS does not have enough resources it's not unlimited budget unfortunately so it has to really weigh up all the different treatments coming to it and which ones provide the most benefit for patients that they can afford and what they have decided in this instance unfortunately is that these treatments both the nanomab and the canimab are not cost effective enough in order to be approved for use in the nhs so this means in the uk if you want to access these treatments you can pay privately you're not able to access them on the nhs and so that's where we are at the moment there's kind of a review process going on like that the companies involved in those treatments appealed that decision that decision is going to be uh reviewed and seen again in january 2026 and what we are now seeing is those treatments that were approved in places like the USA being used in real life in clinics in the USA and we're beginning to get some of that data as well because I think one of the challenges we had with the NICE decision that NICE completely admitted because these are the first treatments of their kind there's quite a lot of unknowns and assumptions that have to be made and so it's really really difficult to make these really challenging life-changing decisions when you don't have great data and you're not sure of all the benefits you're not sure all the side effects or how many people have them so we're kind of going through this process now where the usa have approved them we're looking at that data and we're trying to see if that's challenging some of the assumptions we made or not and of course the other thing we're seeing which i'm sure we'll talk to is the second generation of treatments are already coming to the end or starting clinical trials at phase three clinical trials so these treatments were the beginning of the journey we talked about not the end of the journey and we are definitely on that path towards really changing things for people living with Alzheimer's disease.

5:11Yeah, that's a really positive thing as well, though. We need to start making these big milestone leaps on that road. I've been doing a little bit of research of my own, nothing sort of into, nothing too technical, because unlike yourself, I'm not a doctor. I go to Dr. Google for my treatments. But I was researching how many insurance companies and insurance providers have actually started offering amyloid targeting therapies and so far i've only found one i'm sure all the insurance companies and all the insurance providers are great sponsors of insurance united against dementia but only one hca healthcare uk um it's london bridge hospital now offers amyloid targeting therapies for the treatment of early stage alzheimer's disease and they're using the brand names Lekembi and Kisumla.

6:05Yeah, Kisumla, yeah. Yeah, I mean, it would be great if we could have some, like, really easy pronounced names. And, of course, they're available to self-pay patients at HCA UK. But it's only a very few people able to do that, and it's self-pay. I mean, how much more appetite are you seeing among insurers or private healthcare providers to actually start doing this themselves? Yeah, I mean, it's a really difficult situation that everyone finds themselves in because we do have these treatments that have come through. But they are for a very small group of people, even if it was approved in the NHS, for example, you have to have an early and accurate diagnosis.

6:42And we know in the UK, only two thirds of people ever even get a diagnosis. So already a third of people can't do that. And then of the people that do get a diagnosis, less than 2 % get the type of early and accurate diagnosis that would enable them to actually be able to use these treatments because these treatments remove amyloid. so you have to know you have high amyloid burden and know you have it early so the actual the real situation in the uk at the moment is even if these treatments were approved for everyone very few people would be getting them currently because of the system we live in so unfortunately i think at the moment it is really challenging and because the mhra did approve it they are now available in the uk privately and so everyone has to make their own decision around is this the right thing to invest in right now is this thing that they want to have access to are the side effects right for them they do have side effects so you are going to have to be monitored quite closely for the initial times you also have to go into a hospital setting every two or four weeks to have the injections commonly so it's not for everyone so i i don't believe there's a huge appetite of the room of people that could actually access these treatments i think what will make a difference if in the future the treatments do become more accessible with less side effects and that that is what we're seeing for generation two so one drug for example trontinumab is already now entering phase three trials and that has looked at phase one and one of the challenges was crossing the blood-brain barrier so they have actually created something called brain shuttle technology which i think is an excellent piece of marketing well yeah that sounds really spacey doesn't it it does indeed what it does it essentially makes the blood-brain barrier permeable for the drugs to get across so your blood-brain barrier protects your brain from toxins and venoms and poisons but of course it also stops these treatments getting across while this drug flantinumab makes that permeable so you can give less treatment so you get less side effects but more the treatment gets into your brain to clear out the amyloid that you need it to so that trial's already starting and i think when you get to a situation like that if that trial was successful you'd have less drug you'd have less side effects but the same effects of the drugs that we have seen already and then when you get to that situation hopefully then nice would look at that and it'd be different um because potentially that would have less side effects less monitoring would be required and then i think if mhra made a decision yes and nice made a decision no i think that changes the dynamic because that is more accessible that is more possible we're also talking about now having um not iv delivery but a subcutaneous so injections into your stomach you don't have to go into a hospital every four weeks you may be self-administro at home or go to your gp surgery and again that is now just been approved in the usa for after 18 months of lacanumab you can have injections to your stomach so i think it's these things come in and they become more accessible I think that's when you'll see other people start talking about these treatments currently they're the first ones and it's really difficult to implement the first of a kind of treatments but I think in the next couple years we're really going to see a massive change in how people see these treatments and then access these treatments yes of course I mean that that sounds incredibly realistic doesn't it because whoever's the groundbreaker they're the ones that everyone is looking at and they are the ones to beat but in three four five years time we'll have a whole host of new providers a whole host of different types of drugs whether it's a subcutaneous injection or whether it's a different type of treatment for the amyloid removals and with that choice and competition comes hopefully lower costs as well better implementation across the NHS as well as privately.

10:11And I think that then gives people a lot more to work with and a lot more hope. But I want to come back to something you mentioned earlier about the diagnosis. Every time I'm reading about this, it's crucial that there's an early diagnosis. And I've got lots of friends, many people in our church, they're parents or they themselves are experiencing dementia. and sometimes the changes are so small they don't notice it in other people or notice it in themselves until someone they haven't seen for a very long time comes and then brings it up and then doctors can take a while to get a diagnosis as well so what's sort of the the ideal I mean how do we sort of try and encourage people to get this diagnosed earlier yeah it's a great question and there's there's no one solution to this um we've got a cultural challenge if you compare dementia to cancer for example once someone detects a lump they neatly go to their gp the gps targets to get them referred to get a diagnosis to get them treatment in dementia there isn't the same pressure to go forward because people aren't sure what the symptoms are um they're not sure if what they have is just because they've had a really stressful day because we all forget where we put the keys when we've had a really stressful day we all struggle to remember everyone's name at a family gathering and I think one of the things where we've tried to do Alzheimer's society is talk about dementia is not a natural a part of aging.

11:38Dementia is caused by a collection of different diseases and it's not right and you should absolutely seek your GP a healthcare professional to talk about it if you're concerned about your memory at all and actually the Alzheimer's society we do have something called a symptom checker so you can go on download this symptom checker which kind of helps you identify what the symptoms are for dementia and helps you frame your conversation with your GP so you can have a conversation that may then get you referred for further testing but as I said at the moment even if you do go to a GP at the moment it takes often over two years to get a diagnosis and a third of people never receive it and the two-thirds of two very few get a subtype diagnosis very few people get told what disease is causing their dementia and if you don't have that early and accurate diagnosis you cannot understand your prognosis you cannot get access to the care and support so one of the things that Alzheimer's Society did in partnership with Alzheimer's Research UK and the NIHR funded by the People's Postcode Lottery is we launched two applications and two centres creating blood-based biomarkers because one of the challenges in dementia at the moment is getting that diagnosis because at the moment we have memory tests but often you have memory tests in a meeting with a clinician who meets you and talks to your family you then have to be referred to either a csf test that's a lumbar puncture or a brain scan and it's because only via these two tests can we actually see the proteins building up in your brain or where in your brain to help us give that really accurate diagnosis but we don't have great capacity for those the brain scans we have very low capacity in this country compared to many others and the csf lumbar puncture is quite invasive and so we do need and we don't have great capacity of that so we do need to be careful with who is going for those we wouldn't just send everyone for a lumbar puncture so if we could have a quick early cheap alternative or even a precursor to identify who should go for these further tests that'd be fantastic and that's what we believe these blood tests are so we funded two studies one looking at one particular blood test looking at something called p-tau and another one looking at a whole range of different markers including p-tau and amyloid and nfl and what these studies are doing is they're trying to see if tests that are already used in research settings all the time can be translated into an everyday nhs clinic and in that clinic you may not have a dementia specialist you may not have the best equipment you may not have a patient who has no other comorbidities they may have had a heart attack or stroke maybe on other medications so can a blood test which is quick quick and cheap and we do use them on the nhs of course all the time can this marker of ptl 217 help a clinician make that earlier and accurate diagnosis and refer people to who should go for a brain scan or lumbar puncture, who doesn't need to yet, and kind of ease the pressure on the system and speed up that diagnosis.

14:26So both of those two studies, one called Readout and one called Adapt, started recruiting in 2025. And the next couple of years, we'll get the readout of did these blood tests help people make a better and earlier, more accurate diagnosis. And we think that could be a really important tool for clinicians making that early and accurate diagnosis. I mean, yeah, absolutely. I've had many blood tests over the years for different things. And the cost of doing some of those privately has been about sort of 25 to 75 pounds compared to the average MRI machine, which is about a million pounds or the latest state of the art can be three million pounds for the cost of the NHS.

15:02And of course, you know, if you've got everyone queuing up to use the MRI machine, then you've got a big waiting list, but it's much easier and quicker. And I think that would be a really positive, a positive development. So please keep us posted on that because we're very excited by that. Yeah, absolutely. So one more thing to add on that. I think one of the real things we wanted to do is fund the implementation of that and diversity. Often people who come forth for research settings are often from one demographic, often white European heritage. And one of the things we think these blood tests will do is by getting them out into the system and actually making the requirement.

15:36We want real diversity of the people coming to those systems because the drugs we are talking about, again have mostly been tested on people of white European heritage so we don't know the effects on all the different people so one of the things the Alzheimer's site is really trying to do is make sure these tests not only improve diagnosis but improve diagnosis for everyone in the UK yeah that would be just amazing so I'm looking forward to that and obviously over the years Insurance United against dementia has really been campaigning and raising money to help fund the research we're doing it again this year I've been volunteered or I volunteered depending on which way you look at it to be one of the dementia ambassadors for RUAD at the Financial Times so we're doing our cake bakes and Christmas card sales and we've already smashed our target on JustGiving thank you.

16:21Congratulations. It's all the wonderful advisors and readers of FT Advisor who are already doing that so really really grateful for them but can you just give us a little bit of a breakdown about how that sort of fund money is being used and how it's going to towards the research yeah absolutely so i mean iuad the insurance against the mental program has been absolutely incredible so it's formed in 2027 and actually by january this year it already raised 10 million pounds which is an incredible amount of money towards uh towards outside society and of course a huge part of that is going towards research and they've actually set a target in the future to get to 20 million pounds by 2030 which is again an insane amount of money and it's fantastic and one of the reasons or one of the ways in which we spent this money is focusing on something called the uk dementia research institute so this is a world-leading institute in the uk where we really brought together some of the best people in the center to really focus on the challenges of dementia by bringing them together they can talk to each other play off each other collaborate in a way that wasn't possible previously.

17:25So the Alzheimer's Society is one of the founding members of the DRI. We currently provide funding to that every single year and some of the money from the IUAD has gone into that. It's also gone, the money's gone to our support line where we provide advice and call and support to people at the time when they need it most and that's about 70 ,000 calls a year we answer. So again some of the money has gone into that. So these are one of the things we always say about Alzheimer's societies we're here for help and we're here for hope we provide hope for the future through research through treatments but we're also for people providing help today via calls and dementia advisors and IAD has been a crucial part in allowing us to do both of those things yeah thank you very much that that that support um as well for families could you talk a little bit more about that as well because we don't always we sort of see the effects of dementia on the the person themselves but we don't really often talk about the effects on the families It's something we don't like to discuss, perhaps.

18:23Yeah, and I think it's one of the things, I mean, I think whenever a loved one gets poorly, everyone in the family has to rally around and support that one for an individual. Obviously, dementia is a terminal progressive collection of brain diseases. And there's a lot of requirement on loved ones to provide caring support. As someone cognitively declines, they need more and more support. And we know that, unfortunately, the social care system isn't able to provide everyone support that they need. And so loved ones and families do have to take up more the kind of responsibility for caring for their loved one.

18:57So that's something that our summer site is here to support them as well as the people living with dementia. And whether that be providing respite care or giving them access to respite care, giving them someone to talk to at the end of the phone who knows exactly what they're going through. We also funded some research in what kind of support is needed for someone living with dementia. So if you're a family caregiver and you don't know how to care for someone who has dementia, again, we have experts that have looked at the latest research and can provide you advice in how to care for someone, how to talk to someone who is in the moderate stages of Alzheimer's disease or dementia.

19:29And so, yeah, we really make sure that we understand the whole part of the disease, which is not just that person who has the diagnosis, but their family members. And we're there for every single person from the beginning to the end of their dementia journey. That's absolutely fantastic. Thank you very much. Could you talk a little bit about what your role is at the Alzheimer's Society and maybe a bit about how other people can get involved as well? So my role is the Social Director of Research and Innovation. So I make sure that all the research we fund is world class. So I make sure that we have experts that review every application that comes into us.

20:06So if we fund something or I tell you about some research we funded, it's because we've had an independent panel of experts telling us this is world class research and then we fund it. we fund innovators at the early stages to make sure that they can really develop their products in collaboration with people living with dementia so we know if we are supporting someone to create a product it's a product that's been co-created and they're able to do that so we've helped people create hydration suites uh vr headsets and things like that so that's something we're doing and we also at the moment actually have some research nurses who are ensuring that when someone is diagnosed with dementia, any form of dementia, they can have a conversation about getting involved in the clinical trials that lead to the treatments that we talked about at the beginning of this podcast.

20:51And we know in the UK, people with dementia are not getting involved in those clinical trials. So the Alzheimer's Society is now funding Alzheimer's Society, UKDTN, research nurses, because this is in partnership with the Dementia Trials Network to make sure but everyone who wants to take part in research can have a conversation with someone about that. And we now have four nurses in place around the country beginning to have those conversations and hopefully ramping that up to around 20 nurses in the coming years. So that's a really exciting part. So if people want to get involved, you can certainly search for the Insurance Unite Against Dementia on our website and you can see all the activity and the fundraising they're doing.

21:28But also we have things like Walk for Life, which is where people have the opportunity to take a walk through the countryside. in memory of someone that they're supporting or someone they've lost and help raise money for Outstomers Society, which is the biggest dementia charity in the country. Like I say, providing services with people living with dementia today. We provide policy and influencing support with government to make sure government are held to account supporting people affected by dementia. And we fund world-class research and innovations to make sure that we achieve our vision, which at Outstomers Society, we're hoping for a world where dementia no longer it devastates lives and a world where in 2050 we believe that Alzheimer's disease could be a chronic condition think diabetes HIV something that if you're diagnosed early with and given the right treatment and support you can live a good quality of life and die with dementia but not from Alzheimer's disease and I think that's a really really important vision that we are working towards so any help that people can give either to talk about Alzheimer's disease and dementia download our symptom checklist so people understand what they're looking out for encourage your loved ones to go forward speak to their gp and of course if you can donate to alzheimer's society that's fantastic as well yeah absolutely and there's lots of ways that you can donate to alzheimer's society there's monthly donations obviously you can leave a gift in your will um you can sort of donate in memoriam of someone you can play the lottery you know how about that guys play the lottery a bit more um obviously share any winnings with ft advisor as well uh philanthropy um that's something that you can discuss with clients and there are other ways to donate you can go to ft advisors uh just giving page um which we we've got uh set up or you can raise funds yourself cake bakes you know instead of selling your stuff on vintage maybe do a vintage sale in your office um and anything any any ways you can so there's plenty of ideas actually on the alzheimer's society website um to kind of help with your fundraising and getting involved and you know obviously we're targeting an even higher amount of money I think it'd be amazing if we could say that we have helped to raise 20 million over the next you know x number of years but it's just so crucial isn't it and I know at a time when everyone's kind of asking for money for right reasons obviously it can be hard to kind of know which charity to choose but I was just wondering if you can give us a few statistics about dementia in the UK that could perhaps help us understand just the the challenge ahead yeah absolutely so I mean dementia is the the biggest killer in the country um nearly a million people are currently living with dementia in the UK um and like I say only two-thirds of those people ever even get a diagnosis And typically the journey for someone with a form of dementia is varied, but it takes two years to get a diagnosis.

24:26On average, you live for six to eight years post diagnosis of symptoms. Some of the side effects of that, as we mentioned before, don't just affect you as an individual, but affect your family members and require additional caring responsibilities. responsibilities and so it really is one of the biggest health and social care challenges we face not only from that personal side but from the hospital side one one in five hospital beds is taken up by someone with dementia they go there because the care isn't adequate or isn't efficient all the time and then they can't be released from hospital for the same reason so you also have a challenge in the health care system where the cost of dementia is in the tens of billions you have hospital beds being taken up by people you have the diagnosis not being right you have people with dementia having to go to the gps more often if they don't have an early and accurate diagnosis again challenging the system in another way so i really believe dementia is the biggest health and social care challenge of our time but what i think is incredibly exciting is we are on the cusp of changing it for the first time ever with these treatments coming through with the diagnosis tests coming through we can be that generation that really changed it for people living with dementia in their families, we're making a massive difference to our healthcare systems.

25:41And I think now is the time to really invest in that and to make that happen sooner, because we absolutely can do that. Well, that's such an amazing and positive note to end on. And I mean, I could sit here and talk all day about this, as I'm sure you could, except we actually have to do what you've got really important work to do. You're saving lives, Dr. Rich. Thank you so much. And thank you for those really positive words. Yes, This is something that we can all really get on board with. So I'd encourage my listeners, please do talk to your clients. If they've expressed any slight concerns about a family member, please encourage them to go to the Alzheimer's Society website and download those symptoms checkers.

26:22Maybe even just put a phone call in, you know, just get some support and find out, you know, next ways and next steps. But for now, Dr. Rich, thank you so much for taking the time to speak to us. Thank you so much. It was a pleasure. Thank you. And thank you to all of you for listening. Just a reminder that by the end of this podcast, for CPD purposes, you should be able to list the different ways that Alzheimer's Society is helping to change the lives and outlook and prospects for millions of people across the world, even with dementia. It's really exciting to be able to understand and be able to explain some of the challenges involved and to also be able to list ways that you can get involved and you can help and you can help your clients.

27:06So I want to say thank you again to Dr. Rich. Thank you very much. And thank you all for listening and for your generosity. Until next time, take care.