PARLIAMENTARY DEBATE
New Dementia Treatments - 11 January 2024 (Commons/Westminster Hall)
Debate Detail
Contributions from Helen Whately, are highlighted with a yellow border.
15:00:11
Damian Green
Ashford
I beg to move,
That this House has considered the matter of new dementia treatments.
It is a great pleasure to serve under your chairmanship, Mr Sharma. I thank the Backbench Business Committee for giving me the chance to introduce this debate.
It is timely to be having this debate at the beginning of this year because in 2024, almost for the first time since dementia became an increasingly widespread condition as people live longer, there are the first glimmers of hope. Alzheimer’s Research UK, which is one of the leading dementia charities, alongside various others such as Dementia UK, is openly talking about a tipping point. We must hope it is right, because the cold statistics and the human cost of dementia show that we desperately need progress on diagnosis and treatment for the set of diseases that cause the condition.
The figures are stark: nearly 1 million people in the UK live with dementia, and on current trends that number will have increased to 1.6 million by 2050. As I speak, in the UK there are no treatments that can slow, stop or cure dementia, and we have been living with that situation for a long time.
We all have constituents who are affected—there are 1,600 people living with dementia in my constituency of Ashford—but I first took a special interest in this issue for the worst possible reason: my father suffered from dementia in his last few years, so I saw close up and over a long time how cruel and debilitating a disease it is, not just for the victim but for the families and those closest to them. I am conscious that others in the Chamber will have had similar experiences. One in two of us will be directly affected, either by developing the disease ourselves, caring for someone with the condition or, in some particularly tragic cases, both.
The history of this disease could hardly be bleaker. It is the dark side of the historically wonderful fact that life expectancy has been rising very fast in recent decades in not just this country but many other countries too. One of the problems we face is that our health system has not been devised to cope with this disease.
Despite that bleak background, there is now a glimmer of hope—indeed, several glimmers of hope. The first is that new ways of diagnosing the diseases that cause dementia, such as blood tests for Alzheimer’s, are showing promise. The second, and the main cause of optimism among those who are involved in dealing with dementia day to day, is the development of treatments that slow the course of the disease. Since the treatments are the new things on the horizon, I will return to that subject in a moment.
The third glimmer of hope is that we are developing new insights that show how we can reduce the prevalence of dementia in the first place by addressing the factors that affect our brain health over the entire course of our life. I was fascinated to read that some experts think 40% of dementia cases worldwide could be preventable. That is clearly a long-term figure that we should bear in mind.
Although all three of those changes are important, for the purpose of today’s debate I want to concentrate on the treatments.
That this House has considered the matter of new dementia treatments.
It is a great pleasure to serve under your chairmanship, Mr Sharma. I thank the Backbench Business Committee for giving me the chance to introduce this debate.
It is timely to be having this debate at the beginning of this year because in 2024, almost for the first time since dementia became an increasingly widespread condition as people live longer, there are the first glimmers of hope. Alzheimer’s Research UK, which is one of the leading dementia charities, alongside various others such as Dementia UK, is openly talking about a tipping point. We must hope it is right, because the cold statistics and the human cost of dementia show that we desperately need progress on diagnosis and treatment for the set of diseases that cause the condition.
The figures are stark: nearly 1 million people in the UK live with dementia, and on current trends that number will have increased to 1.6 million by 2050. As I speak, in the UK there are no treatments that can slow, stop or cure dementia, and we have been living with that situation for a long time.
We all have constituents who are affected—there are 1,600 people living with dementia in my constituency of Ashford—but I first took a special interest in this issue for the worst possible reason: my father suffered from dementia in his last few years, so I saw close up and over a long time how cruel and debilitating a disease it is, not just for the victim but for the families and those closest to them. I am conscious that others in the Chamber will have had similar experiences. One in two of us will be directly affected, either by developing the disease ourselves, caring for someone with the condition or, in some particularly tragic cases, both.
The history of this disease could hardly be bleaker. It is the dark side of the historically wonderful fact that life expectancy has been rising very fast in recent decades in not just this country but many other countries too. One of the problems we face is that our health system has not been devised to cope with this disease.
Despite that bleak background, there is now a glimmer of hope—indeed, several glimmers of hope. The first is that new ways of diagnosing the diseases that cause dementia, such as blood tests for Alzheimer’s, are showing promise. The second, and the main cause of optimism among those who are involved in dealing with dementia day to day, is the development of treatments that slow the course of the disease. Since the treatments are the new things on the horizon, I will return to that subject in a moment.
The third glimmer of hope is that we are developing new insights that show how we can reduce the prevalence of dementia in the first place by addressing the factors that affect our brain health over the entire course of our life. I was fascinated to read that some experts think 40% of dementia cases worldwide could be preventable. That is clearly a long-term figure that we should bear in mind.
Although all three of those changes are important, for the purpose of today’s debate I want to concentrate on the treatments.
John Spellar
Warley
I congratulate the right hon. Member on securing this important debate. Is there not an enormously important fourth strand of this: effective management of the condition and the various aids, adaptations and regimes that enable people to continue to function longer, for the benefit of themselves, their families and wider society?
Damian Green
The right hon. Gentleman is completely right. There are new management techniques. I did not want to extend the debate too widely, but I am struck by the way that technology—not cutting-edge technology but technology available to all of us, such as smart speakers—can remind people that they need to take a red pill at 11 o’clock or remind relatives that the fridge has not been opened for five hours, meaning that someone has forgotten to take out their lunch. It can help with all those kinds of day-to-day issues and, if used properly, enable people to live in their own homes for longer, even if they are suffering this disease. I agree that that is a very important potential set of breakthroughs.
Matt Hancock
West Suffolk
I am grateful to my right hon. Friend for giving me the opportunity to add my voice in support of more research in this area. Is it not the case that, despite improvements, the amount of money spent on research and the structuring of proper research trials—which, by their nature, have to go on for many years—is a drop in the ocean compared with the savings we can make in the health system, improvements to people’s lives, and in the social care system? Is that not yet another motivation that makes this topic incredibly important?
15:07:31
Damian Green
My right hon. Friend has huge expertise over the entire health field and therefore in this area as well. He is completely right, and I will come on to savings, particularly potential savings in the social care budget as well as the health budget, in a couple of minutes. It is one of the points I want to emphasise to the Minister.
To return to the treatments, the Medicines and Healthcare products Regulatory Agency has already started consideration of lecanemab and donanemab—I wish treatments had more pronounceable names—two very important breakthrough drugs, and I believe a final decision is expected by the middle of this year. Inevitably, at this early stage of the development of drugs in any particular field, there are many more out there. Another 140 drugs are undergoing clinical trials around the world at the moment. They will not all work, but some of them will, so in scientific and research terms, this is genuinely an exciting period in this field.
Perhaps the most significant point I want to make to the Minister is to express the hope that the way in which the system decides whether to approve a drug is fit for purpose for this type of drug. That is genuinely in question and gives rise to the point my right hon. Friend the Member for West Suffolk (Matt Hancock) made about costs. There are inevitable gaps in our knowledge about the efficacy of new treatments in an area where, up to now, there have been no treatments. Much of the usual comparative work one would expect to be done in clinical trials cannot be done in these circumstances, so there is a task for Ministers to make sure that NHS bodies and the industry develop a joint plan to allow these new treatments to be available to the NHS at a reasonable price.
There is also an important specific point that could affect whether the National Institute for Health and Care Excellence gives financial approval to these treatments in the first place. The bulk of the current costs of dementia falls on the social care system, particularly on unpaid carers. Estimates suggest that around £22 billion a year of costs fall on informal or formal social care. The direct costs to the NHS are only £1.7 billion a year—a small fraction of the cost to the social care system. The current NICE assessment process will take into account only the NHS costs, and clearly that could adversely affect a decision about whether drugs are affordable.
Whether the current NICE system provides the proper result for this type of drug and disease would be questionable at any time, but it is particularly questionable when other arms of government are concentrating on getting more working-age people back to work. More than 1 million people between the ages of 25 and 49 are out of work because of caring responsibilities, and some of those will be caring responsibilities for people suffering from dementia, perhaps in its early stages, when we are not using technology well enough to allow people to lead more or less normal lives.
To return to the treatments, the Medicines and Healthcare products Regulatory Agency has already started consideration of lecanemab and donanemab—I wish treatments had more pronounceable names—two very important breakthrough drugs, and I believe a final decision is expected by the middle of this year. Inevitably, at this early stage of the development of drugs in any particular field, there are many more out there. Another 140 drugs are undergoing clinical trials around the world at the moment. They will not all work, but some of them will, so in scientific and research terms, this is genuinely an exciting period in this field.
Perhaps the most significant point I want to make to the Minister is to express the hope that the way in which the system decides whether to approve a drug is fit for purpose for this type of drug. That is genuinely in question and gives rise to the point my right hon. Friend the Member for West Suffolk (Matt Hancock) made about costs. There are inevitable gaps in our knowledge about the efficacy of new treatments in an area where, up to now, there have been no treatments. Much of the usual comparative work one would expect to be done in clinical trials cannot be done in these circumstances, so there is a task for Ministers to make sure that NHS bodies and the industry develop a joint plan to allow these new treatments to be available to the NHS at a reasonable price.
There is also an important specific point that could affect whether the National Institute for Health and Care Excellence gives financial approval to these treatments in the first place. The bulk of the current costs of dementia falls on the social care system, particularly on unpaid carers. Estimates suggest that around £22 billion a year of costs fall on informal or formal social care. The direct costs to the NHS are only £1.7 billion a year—a small fraction of the cost to the social care system. The current NICE assessment process will take into account only the NHS costs, and clearly that could adversely affect a decision about whether drugs are affordable.
Whether the current NICE system provides the proper result for this type of drug and disease would be questionable at any time, but it is particularly questionable when other arms of government are concentrating on getting more working-age people back to work. More than 1 million people between the ages of 25 and 49 are out of work because of caring responsibilities, and some of those will be caring responsibilities for people suffering from dementia, perhaps in its early stages, when we are not using technology well enough to allow people to lead more or less normal lives.
Mr Philip Hollobone
Kettering
My right hon. Friend is making an excellent speech and a particularly pertinent point about NICE considering only the cost to the NHS. Is that not even more surprising given that NICE stands for “National Institute for Health and Care Excellence”? Clearly, the guidelines need urgent revision.
15:15:17
Damian Green
I am delighted to have my hon. Friend’s support. Since the old Department of Health was renamed the Department of Health and Social Care, it has been particularly important that, in all its manifestations, and indeed in all the manifestations of the bodies that report to it, the Department should reflect the treatment of health and social care as equals. That is a wider point that my hon. Friend should not tempt me to; I can go on at great length about it, and do not wish to in this debate.
As I said, caring responsibilities are a significant reason why so many people of working age are not working. I cited the figure for those between 25 and 49, but if we extend the age range up and down, less than a fifth of people who care for someone with dementia are in paid work. If someone is caring for someone with dementia, it is very likely that they will not be in paid work. I am grateful that others support my point that NICE should be instructed to consider the full cost of dementia to social care, as well as the NHS, to arrive at a proper evaluation of the economic case for the new treatments.
The prospect of these drugs becoming available also throws a spotlight on the need for better and, in particular, earlier diagnosis. At the moment, the drugs are effective only in the early stages of Alzheimer’s, and there is nothing like enough capacity for timely diagnosis. The latest NHS figures suggest that more than a third of the over-65s estimated to have dementia do not have a recorded diagnosis at all. There are significant regional variations within that figure. Some areas of the country are much worse: for example, diagnosis rates in Herefordshire and Worcestershire are as low as 53%. There is also evidence that minority groups, including black people and those of south Asian heritage, have higher rates of under-diagnosis. Without an increase in the effectiveness and timeliness of diagnosis, the beneficial effects of the new treatments will therefore be massively reduced.
For the new hopes I am discussing to be realised, we therefore need a revolution in our diagnostic capacity. At the moment, the most effective ways of diagnosing dementia—namely, PET scans or lumbar punctures—are accessible only to 2% of those seeking a diagnosis. The best short-term solution is to increase access to lumbar puncture, which is much cheaper and more scalable than expanding the expensive scanning equipment. Alzheimer’s Research UK suggests that the annual capacity for lumbar punctures should be increased from 2,000 to 20,000 a year. I am conscious that the Government are analysing the responses to the consultation on the major conditions strategy and that dementia is one of the six conditions covered by the strategy. My appeal to the Minister on that front is that, as we do in many cases in health and social care, we think at least as much about prevention as we do about cure.
Given the demographic pressures, it seems unarguable that, if we carry on as we have done since the NHS was created, concentrating almost entirely on treatments while relatively neglecting public health and preventive measures, we are heading for even more difficulties in the long run. But that is a much wider debate. In the specific area of preventing dementia, a number of factors, including hearing loss and high blood pressure, can and should be part of a preventive approach, which would reduce demand for expensive treatments in the long run and, even more importantly, allow people to continue to lead more or less normal lives.
One other point about the new era that we are hopefully entering with these treatments is that, as a country, we are well placed to contribute to the vital research that is needed. We have the scientists and the companies, but too few people are currently aware of the possibilities. Only 2% of people with a dementia diagnosis are currently registered to hear about clinical trials. The total UK share of the current clinical trials for dementia around the world is 7%. I hope that the Government will look at that aspect as part of the overall plan for dealing with dementia, which we are looking forward to.
Before I sit down, I should emphasise that I do not want to be ungenerous or over-critical about the Government’s action in this area. I am conscious that the Government have committed to doubling the funding for dementia research to £160 million by the next financial year, and I also very much welcomed the launch, last summer, of the Dame Barbara Windsor dementia mission; I am glad that the Government have put £95 million behind that. I know, of course, that the Minister and the Government widely recognise the horror of this disease, the fact that it is becoming more widespread and affecting more and more families and the fact that not just more money, but more creative thinking, will be needed to turn the tide.
I want to end on a hopeful note. This generation has the chance to see the end of the terrible situation whereby a diagnosis of dementia is a life sentence of an inevitably long degeneration. This absolutely needs to be a turning point for the millions of people who are touched by this dreadful disease. I hope that the Government and the medical authorities recognise the scale of the opportunity that scientific advance has given to them and all of us. This year could be key to setting the UK on a path to a more hopeful future. I am very confident that the Minister will be determined to lead us on that journey.
As I said, caring responsibilities are a significant reason why so many people of working age are not working. I cited the figure for those between 25 and 49, but if we extend the age range up and down, less than a fifth of people who care for someone with dementia are in paid work. If someone is caring for someone with dementia, it is very likely that they will not be in paid work. I am grateful that others support my point that NICE should be instructed to consider the full cost of dementia to social care, as well as the NHS, to arrive at a proper evaluation of the economic case for the new treatments.
The prospect of these drugs becoming available also throws a spotlight on the need for better and, in particular, earlier diagnosis. At the moment, the drugs are effective only in the early stages of Alzheimer’s, and there is nothing like enough capacity for timely diagnosis. The latest NHS figures suggest that more than a third of the over-65s estimated to have dementia do not have a recorded diagnosis at all. There are significant regional variations within that figure. Some areas of the country are much worse: for example, diagnosis rates in Herefordshire and Worcestershire are as low as 53%. There is also evidence that minority groups, including black people and those of south Asian heritage, have higher rates of under-diagnosis. Without an increase in the effectiveness and timeliness of diagnosis, the beneficial effects of the new treatments will therefore be massively reduced.
For the new hopes I am discussing to be realised, we therefore need a revolution in our diagnostic capacity. At the moment, the most effective ways of diagnosing dementia—namely, PET scans or lumbar punctures—are accessible only to 2% of those seeking a diagnosis. The best short-term solution is to increase access to lumbar puncture, which is much cheaper and more scalable than expanding the expensive scanning equipment. Alzheimer’s Research UK suggests that the annual capacity for lumbar punctures should be increased from 2,000 to 20,000 a year. I am conscious that the Government are analysing the responses to the consultation on the major conditions strategy and that dementia is one of the six conditions covered by the strategy. My appeal to the Minister on that front is that, as we do in many cases in health and social care, we think at least as much about prevention as we do about cure.
Given the demographic pressures, it seems unarguable that, if we carry on as we have done since the NHS was created, concentrating almost entirely on treatments while relatively neglecting public health and preventive measures, we are heading for even more difficulties in the long run. But that is a much wider debate. In the specific area of preventing dementia, a number of factors, including hearing loss and high blood pressure, can and should be part of a preventive approach, which would reduce demand for expensive treatments in the long run and, even more importantly, allow people to continue to lead more or less normal lives.
One other point about the new era that we are hopefully entering with these treatments is that, as a country, we are well placed to contribute to the vital research that is needed. We have the scientists and the companies, but too few people are currently aware of the possibilities. Only 2% of people with a dementia diagnosis are currently registered to hear about clinical trials. The total UK share of the current clinical trials for dementia around the world is 7%. I hope that the Government will look at that aspect as part of the overall plan for dealing with dementia, which we are looking forward to.
Before I sit down, I should emphasise that I do not want to be ungenerous or over-critical about the Government’s action in this area. I am conscious that the Government have committed to doubling the funding for dementia research to £160 million by the next financial year, and I also very much welcomed the launch, last summer, of the Dame Barbara Windsor dementia mission; I am glad that the Government have put £95 million behind that. I know, of course, that the Minister and the Government widely recognise the horror of this disease, the fact that it is becoming more widespread and affecting more and more families and the fact that not just more money, but more creative thinking, will be needed to turn the tide.
I want to end on a hopeful note. This generation has the chance to see the end of the terrible situation whereby a diagnosis of dementia is a life sentence of an inevitably long degeneration. This absolutely needs to be a turning point for the millions of people who are touched by this dreadful disease. I hope that the Government and the medical authorities recognise the scale of the opportunity that scientific advance has given to them and all of us. This year could be key to setting the UK on a path to a more hopeful future. I am very confident that the Minister will be determined to lead us on that journey.
15:18:03
Debbie Abrahams
Oldham East and Saddleworth
It is a pleasure to serve under your chairship this afternoon, Mr Sharma. I congratulate the right hon. Member for Ashford (Damian Green) on securing this very important debate and on his excellent speech. I learned a few things from that speech, and I had thought I was quite well informed on the developments in dementia research.
As some people may know, my mum, Angela, was diagnosed with Alzheimer’s disease when she was 64. I, along with my stepfather and brother, cared for her until she died in 2012. It was that experience that drove me, first of all, to be the first MP to become a Dementia Friends champion. As the right hon. Member knows, I was subsequently elected as co-chair of the all-party parliamentary group on dementia.
When we talk about dementia, we are using a collective term that covers the common symptoms associated with a range of brain diseases. The most common of them is Alzheimer’s disease, but there are dozens of others. My mother-in-law was diagnosed with vascular dementia in her 80s, and there is also dementia with Lewy bodies, frontotemporal dementia and, as I say, dozens of other conditions. Each of those diseases has a different pathology and, as a consequence, the specific therapies that we are talking about today will not necessarily be appropriate for them; they will need to develop their own specific therapies.
I absolutely agree with the right hon. Member for Ashford that this is a time of hope, because we are making groundbreaking discoveries and there have been developments in the therapies. I also totally concur with him about the importance of prevention. We know that what is good for our heart is good for our head as well. The previous debate that you were chairing, Mr Sharma, was about smoking and tobacco use; we know that has a significant impact on dementia prevalence.
I will reiterate some of the points that the right hon. Gentleman made about dementia. First, on prevalence, there are 900,000 people living with dementia in the UK, and that is likely to increase. I will pick him up on his point that life expectancy is increasing. It is not increasing; it is flatlining and has been since 2017. In areas such as mine, it is actually going down. The prevalence of dementia is reflected in that trend. I point people to the excellent work of Professor Sir Michael Marmot, who this week published his update that the picture is not changing, unfortunately.
People with dementia account for more than 70% of those in residential care homes over the age of 65, and 60% of those receiving home care. As we will have seen from today’s NHS performance data, it is estimated that a quarter of NHS beds are occupied by people with dementia, who remain in hospital on average twice as long as people who do not live with the condition. Again, I agree with the right hon. Gentleman that, unfortunately, that reflects the crisis we have in social care. We just cannot discharge people from hospital knowing that they are not going to have the support that they need, whether that is in the community or in specialist residential care beds. In addition to his point about NICE, we also need to be serious about the future of social care reforms, particularly the reforms recommended back in 2015 by Andrew Dilnot.
Most importantly, we need to recognise that dementia is now the UK’s biggest killer. It has overtaken heart disease and cancer as the biggest killer in the country. We also need to understand that dementia is not a natural and automatic part of ageing. Although, yes, because we are an ageing society, there will be an increase in the prevalence of dementia, it does not mean that we automatically get it as we get older. It is clear that dementia is the most significant health and social care challenge of our time.
I was disappointed that dementia has not had the political priority that it deserves. I was disappointed that the Government decided to absorb dementia into the major conditions strategy, and not give it the focus and attention that it deserves for all the reasons that the right hon. Gentleman has given. Unfortunately, that reflects a number of things, not least what is wrong with our political system and the short termism driven by where we are in the political cycle.
Despite the serious challenges, this is an incredibly exciting time for dementia research. I advise people to look at the all-party parliamentary group’s report on dementia research, which we conducted a couple of years ago. It went right through all the developments, from prevention and looking at biomarkers all the way through to the quality of care and the evidence base around that. There is a lot to be excited about.
In the past 18 months, we have seen the announcement of two effective disease-modifying treatments for early-stage Alzheimer’s that have been proven to slow the progress of the disease by 20% to 40%. That is really significant, and I share everybody’s excitement about it. Lecanemab and donanemab target and remove a protein called amyloid, which is what builds up in our brain and is harmful to it. It basically stops neurones communicating —not just with each other in the brain, but with all different parts of the body as well. They are really important drugs that will reduce the build-up, or clogging-up, of the neurones. As an aside, when I was undertaking personal care for my mum as she got to the late stages of her life—lifting her, lifting her head, and so on—I could feel the change in the shape of her head, because her brain was shrinking; it was just imploding on itself. I hope that gives a sense of what is happening in somebody with Alzheimer’s and of the ravages of the disease.
To have two new disease-modifying drugs for Alzheimer’s disease in the space of a year is a turning point in the fight against the disease and could mean the beginning of the end of this devastating condition. Science is proving that it is possible to slow down the progression of the condition, and lecanemab and donanemab are the first of what we hope will be many more effective treatments. Hopefully, one day, Alzheimer’s disease could be considered a long-term but manageable condition alongside diabetes and asthma.
Lecanemab has already been approved as a safe drug by the Food and Drug Administration in the United States. As we have heard, we expect the Medicines and Healthcare products Regulatory Agency to make a decision very soon. Then, of course, there is the clinical guidance associated with the implementation and use of these drugs, which is undertaken by NICE. I have to say that I had not picked up that, as the right hon. Member for Ashford said, it would look only at the impact on social care. I hope the Minister will respond that she will be writing to NICE to say that is just not acceptable. As co-chair of the APPG on dementia, I am quite happy to write a letter along those lines as well, together with the chair of the APPG on adult social care, the right hon. Member for Ashford. It just cannot happen. I urge the MHRA and NICE not to procrastinate, and to try to get this sorted as soon as possible without compromising the validity of their assessments.
However, very worryingly, even if these drugs were given clinical approval tomorrow, we would unfortunately not be in a position to make use of them. That is the state of our health system at the moment. For lecanemab and donanemab to be effective, they require an early diagnosis of dementia and a specific sub-type diagnosis of Alzheimer’s disease. In England alone, a third of people with dementia do not have a diagnosis, and many only have a non-specific diagnosis of dementia. Currently, none of those individuals would be able to access these novel therapies.
A few months ago, the APPG on dementia produced a report on diagnosis rates and the inequalities in the diagnosis rates. I heard of a diagnosis rate lower than the rate of 50% in Hereford mentioned by the right hon. Member for Ashford: a rate of 40% in Devon. The top marks go to Stoke. For whatever reason, Stoke seems to be doing very well, with a diagnosis rate of over 80%. Oldham, at 78%, has got a little bit of catching up to do to Stoke, but we are quite pleased with the direction of travel. We have not recovered to the pre-pandemic diagnosis rates. We all need to recognise what we can do about that.
I urge the Government to look at the following three areas as a matter of urgency. First, not enough people are being diagnosed at an early stage of disease progression. Many memory services are struggling to meet current demand, let alone the expected increase if disease-modifying treatments do become available. Secondly, there is a lack of sub-type diagnosis. As I mentioned at the start, there are more than 100 different diseases that cause dementia. Too often people receive a general diagnosis of dementia without a sub-type. Without that, it is impossible to determine an individual’s suitability for the new drugs.
Thirdly, there is insufficient access to positron emission tomography scanners and cerebrospinal fluid testing—the lumbar puncture testing that the right hon. Member for Ashford mentioned. As I mentioned, a specific diagnosis is required and the PET scanner and CSF test are the only tests that can give evidence of the presence of amyloid in the brain, but access to those tests is woefully restricted due to lack of equipment. I had not picked up on the cost-effectiveness, so I thank the right hon. Member for raising that.
Workforce and diagnostic barriers can be overcome with clear and decisive action from Government. I want to see at pace an expansion of diagnostic capacity so that everyone with suspected Alzheimer’s disease can access a test to confirm eligibility for treatment at an early stage in their disease progression. We must address the current inequalities in diagnosis across the country.
We need a transformational change to the diagnostic workforce to ensure sufficient workforce capacity with the necessary skills and expertise to administer the required specialist tests and make diagnoses. Meaningful involvement of the people living with Alzheimer’s disease and their carers must be central to plans for system preparedness, with continuous consultation from the outset and ongoing oversight through an established group.
I am sure we would all agree that we are at a pivotal moment for dementia in this country. Lecanemab, donanemab and the treatments that might follow have the potential to improve the lives of hundreds of thousands of people, but we need to act now to ensure we are ready to deliver them as soon as they become available. We have come such a long way in the past 20 years, with incredible advances in scientific research that has culminated in the discovery of those novel drugs. Such effort cannot be wasted by Government inactivity and failure to respond.
Simply put, scientists are doing their job to give us new treatments, but now it is up to the Government to do theirs and ensure the system is ready to deliver therapies to the people who need them. It is time to make dementia a priority and we should make a start.
I thank the Alzheimer’s Society for its support with the APPG.
As some people may know, my mum, Angela, was diagnosed with Alzheimer’s disease when she was 64. I, along with my stepfather and brother, cared for her until she died in 2012. It was that experience that drove me, first of all, to be the first MP to become a Dementia Friends champion. As the right hon. Member knows, I was subsequently elected as co-chair of the all-party parliamentary group on dementia.
When we talk about dementia, we are using a collective term that covers the common symptoms associated with a range of brain diseases. The most common of them is Alzheimer’s disease, but there are dozens of others. My mother-in-law was diagnosed with vascular dementia in her 80s, and there is also dementia with Lewy bodies, frontotemporal dementia and, as I say, dozens of other conditions. Each of those diseases has a different pathology and, as a consequence, the specific therapies that we are talking about today will not necessarily be appropriate for them; they will need to develop their own specific therapies.
I absolutely agree with the right hon. Member for Ashford that this is a time of hope, because we are making groundbreaking discoveries and there have been developments in the therapies. I also totally concur with him about the importance of prevention. We know that what is good for our heart is good for our head as well. The previous debate that you were chairing, Mr Sharma, was about smoking and tobacco use; we know that has a significant impact on dementia prevalence.
I will reiterate some of the points that the right hon. Gentleman made about dementia. First, on prevalence, there are 900,000 people living with dementia in the UK, and that is likely to increase. I will pick him up on his point that life expectancy is increasing. It is not increasing; it is flatlining and has been since 2017. In areas such as mine, it is actually going down. The prevalence of dementia is reflected in that trend. I point people to the excellent work of Professor Sir Michael Marmot, who this week published his update that the picture is not changing, unfortunately.
People with dementia account for more than 70% of those in residential care homes over the age of 65, and 60% of those receiving home care. As we will have seen from today’s NHS performance data, it is estimated that a quarter of NHS beds are occupied by people with dementia, who remain in hospital on average twice as long as people who do not live with the condition. Again, I agree with the right hon. Gentleman that, unfortunately, that reflects the crisis we have in social care. We just cannot discharge people from hospital knowing that they are not going to have the support that they need, whether that is in the community or in specialist residential care beds. In addition to his point about NICE, we also need to be serious about the future of social care reforms, particularly the reforms recommended back in 2015 by Andrew Dilnot.
Most importantly, we need to recognise that dementia is now the UK’s biggest killer. It has overtaken heart disease and cancer as the biggest killer in the country. We also need to understand that dementia is not a natural and automatic part of ageing. Although, yes, because we are an ageing society, there will be an increase in the prevalence of dementia, it does not mean that we automatically get it as we get older. It is clear that dementia is the most significant health and social care challenge of our time.
I was disappointed that dementia has not had the political priority that it deserves. I was disappointed that the Government decided to absorb dementia into the major conditions strategy, and not give it the focus and attention that it deserves for all the reasons that the right hon. Gentleman has given. Unfortunately, that reflects a number of things, not least what is wrong with our political system and the short termism driven by where we are in the political cycle.
Despite the serious challenges, this is an incredibly exciting time for dementia research. I advise people to look at the all-party parliamentary group’s report on dementia research, which we conducted a couple of years ago. It went right through all the developments, from prevention and looking at biomarkers all the way through to the quality of care and the evidence base around that. There is a lot to be excited about.
In the past 18 months, we have seen the announcement of two effective disease-modifying treatments for early-stage Alzheimer’s that have been proven to slow the progress of the disease by 20% to 40%. That is really significant, and I share everybody’s excitement about it. Lecanemab and donanemab target and remove a protein called amyloid, which is what builds up in our brain and is harmful to it. It basically stops neurones communicating —not just with each other in the brain, but with all different parts of the body as well. They are really important drugs that will reduce the build-up, or clogging-up, of the neurones. As an aside, when I was undertaking personal care for my mum as she got to the late stages of her life—lifting her, lifting her head, and so on—I could feel the change in the shape of her head, because her brain was shrinking; it was just imploding on itself. I hope that gives a sense of what is happening in somebody with Alzheimer’s and of the ravages of the disease.
To have two new disease-modifying drugs for Alzheimer’s disease in the space of a year is a turning point in the fight against the disease and could mean the beginning of the end of this devastating condition. Science is proving that it is possible to slow down the progression of the condition, and lecanemab and donanemab are the first of what we hope will be many more effective treatments. Hopefully, one day, Alzheimer’s disease could be considered a long-term but manageable condition alongside diabetes and asthma.
Lecanemab has already been approved as a safe drug by the Food and Drug Administration in the United States. As we have heard, we expect the Medicines and Healthcare products Regulatory Agency to make a decision very soon. Then, of course, there is the clinical guidance associated with the implementation and use of these drugs, which is undertaken by NICE. I have to say that I had not picked up that, as the right hon. Member for Ashford said, it would look only at the impact on social care. I hope the Minister will respond that she will be writing to NICE to say that is just not acceptable. As co-chair of the APPG on dementia, I am quite happy to write a letter along those lines as well, together with the chair of the APPG on adult social care, the right hon. Member for Ashford. It just cannot happen. I urge the MHRA and NICE not to procrastinate, and to try to get this sorted as soon as possible without compromising the validity of their assessments.
However, very worryingly, even if these drugs were given clinical approval tomorrow, we would unfortunately not be in a position to make use of them. That is the state of our health system at the moment. For lecanemab and donanemab to be effective, they require an early diagnosis of dementia and a specific sub-type diagnosis of Alzheimer’s disease. In England alone, a third of people with dementia do not have a diagnosis, and many only have a non-specific diagnosis of dementia. Currently, none of those individuals would be able to access these novel therapies.
A few months ago, the APPG on dementia produced a report on diagnosis rates and the inequalities in the diagnosis rates. I heard of a diagnosis rate lower than the rate of 50% in Hereford mentioned by the right hon. Member for Ashford: a rate of 40% in Devon. The top marks go to Stoke. For whatever reason, Stoke seems to be doing very well, with a diagnosis rate of over 80%. Oldham, at 78%, has got a little bit of catching up to do to Stoke, but we are quite pleased with the direction of travel. We have not recovered to the pre-pandemic diagnosis rates. We all need to recognise what we can do about that.
I urge the Government to look at the following three areas as a matter of urgency. First, not enough people are being diagnosed at an early stage of disease progression. Many memory services are struggling to meet current demand, let alone the expected increase if disease-modifying treatments do become available. Secondly, there is a lack of sub-type diagnosis. As I mentioned at the start, there are more than 100 different diseases that cause dementia. Too often people receive a general diagnosis of dementia without a sub-type. Without that, it is impossible to determine an individual’s suitability for the new drugs.
Thirdly, there is insufficient access to positron emission tomography scanners and cerebrospinal fluid testing—the lumbar puncture testing that the right hon. Member for Ashford mentioned. As I mentioned, a specific diagnosis is required and the PET scanner and CSF test are the only tests that can give evidence of the presence of amyloid in the brain, but access to those tests is woefully restricted due to lack of equipment. I had not picked up on the cost-effectiveness, so I thank the right hon. Member for raising that.
Workforce and diagnostic barriers can be overcome with clear and decisive action from Government. I want to see at pace an expansion of diagnostic capacity so that everyone with suspected Alzheimer’s disease can access a test to confirm eligibility for treatment at an early stage in their disease progression. We must address the current inequalities in diagnosis across the country.
We need a transformational change to the diagnostic workforce to ensure sufficient workforce capacity with the necessary skills and expertise to administer the required specialist tests and make diagnoses. Meaningful involvement of the people living with Alzheimer’s disease and their carers must be central to plans for system preparedness, with continuous consultation from the outset and ongoing oversight through an established group.
I am sure we would all agree that we are at a pivotal moment for dementia in this country. Lecanemab, donanemab and the treatments that might follow have the potential to improve the lives of hundreds of thousands of people, but we need to act now to ensure we are ready to deliver them as soon as they become available. We have come such a long way in the past 20 years, with incredible advances in scientific research that has culminated in the discovery of those novel drugs. Such effort cannot be wasted by Government inactivity and failure to respond.
Simply put, scientists are doing their job to give us new treatments, but now it is up to the Government to do theirs and ensure the system is ready to deliver therapies to the people who need them. It is time to make dementia a priority and we should make a start.
I thank the Alzheimer’s Society for its support with the APPG.
15:32:47
Karin Smyth
Bristol South
It is a pleasure to serve under your chairship this afternoon, Mr Sharma. I thank the Backbench Business Committee for granting this debate. I pay tribute to work of the right hon. Member for Ashford (Damian Green) and my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams). They are formidable chairs of their respective APPGs on adult social care and on dementia. I know that the Minister has great respect for them, as we all do; they do fantastic work. Sharing the experiences of supporting family members was very apparent in this debate, and my hon. Friend’s image of holding her mother and feeling the ravages of the disease was incredibly well put. We have heard very moving statements this afternoon.
We are holding this debate at a crucial time for our country. We are a world leader—sometimes we overuse that term—in life sciences research that offers people living with dementia the prospect of new treatments as a lifeline. Finding a cure is where we all want to get to. The new treatments provide real hope and opportunity, but how do we get there? We have touched on that. New treatments and research help, but the workforce is where we will make a big difference. That is why we have committed to recovering clinical trial activity in the UK and delivering on the NHS long-term workforce plan.
We want to make sure it is easier to conduct lifesaving research in the UK for conditions such as dementia by implementing a more efficient set-up process so that people can sign up to participate in trials more easily, but that has to be supported by ensuring our NHS has the staff it needs to enable more clinical trials. Without the workforce to deliver new treatments, those living with dementia and their families will continue to face delays and we will not be able to access the benefits of early diagnosis. That is why I am pleased that the Government have finally accepted the need for a long-term workforce plan in the NHS.
As my hon. Friend the Member for Oldham East and Saddleworth said, it is disappointing that the Government shelved the plans for a dedicated dementia strategy. England remains the only nation without a specific dementia plan. That is very short-term thinking, and it would be interesting to hear from the Minister about that. In 2022, I said:
“We cannot give confidence to people suffering with dementia and their carers without a much clearer plan that is in place very quickly.”—[Official Report, 14 June 2022; Vol. 716, c. 141.]
That remains the case today.
Although we currently have no treatments to slow or cure dementia, as we have heard, there is hope on the horizon after the recent breakthroughs with drugs that target the underlying causes of Alzheimer’s disease, which are a hugely welcome step towards combating it. We need to ensure that our health service is ready and able to deliver the new treatments and technologies when they become available. The treatments, if approved, will depend on early diagnosis, which can be determined only by a PET scan or a CSF test. As the right hon. Member for Ashford said, the health service was not set up in 1948 to cope with dementia and similar diseases, so we need a 21st century service that can. It would be helpful to hear what plans the Minister has to ensure that the NHS is ready to deliver the new treatments. Has she had any discussions with NHS England about delivery ahead of the potential MHRA decision this year on the drugs currently under consideration?
There are too many people living with undiagnosed dementia. Part of the problem is the lack of scanning capacity for accurate diagnosis of dementia sub-types. We have one of the lowest per capita ratios of diagnostic scanners in the OECD, behind Russia, Slovakia and Chile. What steps are the Government taking to increase that diagnostic infrastructure? We have put forward a clear and costed plan to double the number of scanners, and, as with many of our other policies, the Minister is welcome to borrow it.
In a response to a written question last month, the Minister restated the commitment to double funding for dementia research, but I would welcome an update on whether that is on track for delivery this year. Further research continues to be vital to ensure that people living with dementia receive an early and accurate diagnosis. We have heard today about emerging techniques and new technologies, but we have to be able to access them.
It is estimated that more than 1 million people aged 25 to 49 are out of work due to caring responsibilities, so we need to alleviate the challenges and economic strain as a result of those caring for people living with dementia. It is not good for them, their families or, indeed, our economy. New treatments bring hope, but to benefit from them, we need a Government with the competence and foresight to seize the opportunity. Transforming dementia diagnosis and care is vital to improve the lives of those living with dementia and those who care for them. The bulk of the cost of dementia falls not on the NHS, but on unpaid carers and the care system, as hon. Members have said so eloquently today.
After 14 years, Mr Sharma, you would expect me to say that the Conservative party is not capable of making the NHS fit for the 21st century, let alone making the most of the new opportunities that our life science sector present for people. We want to make the NHS fit for the future, so that we are able to benefit from the exciting new treatments being developed and that all those with dementia and their families can be confident that they will receive the support they deserve.
We are holding this debate at a crucial time for our country. We are a world leader—sometimes we overuse that term—in life sciences research that offers people living with dementia the prospect of new treatments as a lifeline. Finding a cure is where we all want to get to. The new treatments provide real hope and opportunity, but how do we get there? We have touched on that. New treatments and research help, but the workforce is where we will make a big difference. That is why we have committed to recovering clinical trial activity in the UK and delivering on the NHS long-term workforce plan.
We want to make sure it is easier to conduct lifesaving research in the UK for conditions such as dementia by implementing a more efficient set-up process so that people can sign up to participate in trials more easily, but that has to be supported by ensuring our NHS has the staff it needs to enable more clinical trials. Without the workforce to deliver new treatments, those living with dementia and their families will continue to face delays and we will not be able to access the benefits of early diagnosis. That is why I am pleased that the Government have finally accepted the need for a long-term workforce plan in the NHS.
As my hon. Friend the Member for Oldham East and Saddleworth said, it is disappointing that the Government shelved the plans for a dedicated dementia strategy. England remains the only nation without a specific dementia plan. That is very short-term thinking, and it would be interesting to hear from the Minister about that. In 2022, I said:
“We cannot give confidence to people suffering with dementia and their carers without a much clearer plan that is in place very quickly.”—[Official Report, 14 June 2022; Vol. 716, c. 141.]
That remains the case today.
Although we currently have no treatments to slow or cure dementia, as we have heard, there is hope on the horizon after the recent breakthroughs with drugs that target the underlying causes of Alzheimer’s disease, which are a hugely welcome step towards combating it. We need to ensure that our health service is ready and able to deliver the new treatments and technologies when they become available. The treatments, if approved, will depend on early diagnosis, which can be determined only by a PET scan or a CSF test. As the right hon. Member for Ashford said, the health service was not set up in 1948 to cope with dementia and similar diseases, so we need a 21st century service that can. It would be helpful to hear what plans the Minister has to ensure that the NHS is ready to deliver the new treatments. Has she had any discussions with NHS England about delivery ahead of the potential MHRA decision this year on the drugs currently under consideration?
There are too many people living with undiagnosed dementia. Part of the problem is the lack of scanning capacity for accurate diagnosis of dementia sub-types. We have one of the lowest per capita ratios of diagnostic scanners in the OECD, behind Russia, Slovakia and Chile. What steps are the Government taking to increase that diagnostic infrastructure? We have put forward a clear and costed plan to double the number of scanners, and, as with many of our other policies, the Minister is welcome to borrow it.
In a response to a written question last month, the Minister restated the commitment to double funding for dementia research, but I would welcome an update on whether that is on track for delivery this year. Further research continues to be vital to ensure that people living with dementia receive an early and accurate diagnosis. We have heard today about emerging techniques and new technologies, but we have to be able to access them.
It is estimated that more than 1 million people aged 25 to 49 are out of work due to caring responsibilities, so we need to alleviate the challenges and economic strain as a result of those caring for people living with dementia. It is not good for them, their families or, indeed, our economy. New treatments bring hope, but to benefit from them, we need a Government with the competence and foresight to seize the opportunity. Transforming dementia diagnosis and care is vital to improve the lives of those living with dementia and those who care for them. The bulk of the cost of dementia falls not on the NHS, but on unpaid carers and the care system, as hon. Members have said so eloquently today.
After 14 years, Mr Sharma, you would expect me to say that the Conservative party is not capable of making the NHS fit for the 21st century, let alone making the most of the new opportunities that our life science sector present for people. We want to make the NHS fit for the future, so that we are able to benefit from the exciting new treatments being developed and that all those with dementia and their families can be confident that they will receive the support they deserve.
15:42:08
Helen Whately
The Minister for Social Care
It is a pleasure to serve under your chairmanship, Mr Sharma. I congratulate my right hon. Friend the Member for Ashford (Damian Green) on securing this debate. I also commend the campaigning of several charities in this area, including Alzheimer’s Research UK, the Alzheimer’s Society, Dementia UK, Age UK and many others that do so much to raise awareness of dementia, fund research, and support people with dementia and their carers.
I commend my right hon. Friend on his speech. Like many, he has his own experience of dementia with his father, which has clearly informed the significant work that he has done in this area. He spoke about some of the statistics, which I will come on to, and about how a dementia diagnosis can be a bleak prospect. He also spoke about some glimmers of hope for people with dementia and for us as a society—for instance, the fact that dementia can be preventable for some people; our growing understanding of the importance of brain health and how we achieve it; and the progress being made towards treatments that can genuinely make a difference in the future for people with dementia. I heard his specific question about the evaluation by NICE of the treatments and whether the evaluation approach is fit for purpose; I will come on to that shortly.
My right hon. Friend also talked about the importance of better and earlier diagnosis. Indeed, he mentioned that, at the moment, more than a third of people who have dementia are estimated not to have a diagnosis, although, clearly, the other side of that is that about two thirds of people do have a diagnosis. Although we know that the pandemic hit our ability to diagnose people, we have seen some recovery in the diagnosis rate since the pandemic. It is now at the highest level for three years. He rightly said that, overall, for this area, as for many others, prevention is at least as important as a cure. He spoke about the opportunity, in that dementia diagnosis should no longer be a life sentence for this generation, which is an uplifting prospect for all of us involved.
We also heard from the hon. Member for Oldham East and Saddleworth (Debbie Abrahams), who spoke about her experience with dementia and how she cared for her mother Angela when she had Alzheimer’s, until she died. I have huge respect for her, knowing how difficult that must have been. She is also extremely knowledgeable about dementia and spoke about the many different sub-types of dementia, and I thank her for her work as the chair of the all-party group on dementia.
The hon. Lady spoke about hospital stays for people with dementia; a significant number of people are in hospital with dementia. As part of my brief, I have oversight of discharges from hospital and urgent emergency care, and I have spent a lot of time thinking about the flow through hospitals. I think a lot about people with dementia and how we can support them to be discharged to the best place for their care afterwards, or how we can avoid long stays in hospital for them. It can then be so difficult for them to be discharged, given the potential deconditioning that happens to people in hospital.
The hon. Lady rightly talked about how dementia is now the No. 1 cause of death in the UK, but it should not be seen as inevitable for us as we age, and in an ageing society. I heard her three asks, calling for dementia to be diagnosed more often at an early stage; for us to do better at diagnosing sub-types of dementia; and for us to improve access to PET scans and lumbar punctures for diagnosis. I will come to some of those points in a moment. I can definitely agree with the Opposition spokesperson, the hon. Member for Bristol South (Karin Smyth), that we have heard speeches from formidable colleagues in the debate, as well as from a number of others who joined us and contributed through interventions.
I will start with the impact of dementia. We know that close to 1 million people in the UK suffer from dementia. Around 900,000 people over the age of 65 and almost 50,000 people under the age of 65 are estimated to have dementia. We expect those numbers to increase to more than 1 million by next year and more than 1.5 million by 2050.
The stats are one thing, and they clearly point to the scale of dementia in our society, but they do not necessarily bring to life the human cost of dementia—what it means for people who have it, their families and friends, what it means practically for someone with dementia and those close to them, and what the challenges are of living with dementia or caring for somebody with it. There are significant financial burdens, both on people working who are then diagnosed and may be unable to work, so they have lost income, and on carers, who may have to cut back their work hours or leave work altogether. There are then the financial costs of professional care, whether that is state-funded social care for those who receive it, or self-funded care.
Most significantly, there is the emotional cost of dementia—what the diagnosis means for the individual who learns what is making life so difficult for them and knows the prospects ahead as the disease progresses, what it means for those they love, and what the experience is like for people who are close to them and care for them. It can be very difficult to care for somebody while at the same time feeling as if the person they know and love is being stolen from them. That emotional cost is unquantifiable, but we know that it hits very hard.
Like other hon. Members, I feel that I have painted a pretty bleak picture of what dementia means to our society, but I have no doubt that there are real reasons for optimism. First, we now understand that a significant proportion of dementia—it is estimated to be around 40%—is either preventable or at least delayable, and that we can actually make a difference. Secondly, real progress is now being made in the research into treatments, and there is the prospect of treatments becoming available that will genuinely make a difference to the progress of the disease. There are real reasons for optimism, although, as a Government Minister, I feel that optimism on its own is not enough.
The question that I am sure hon. Members would like me to answer is what we are actually doing to realise this potential and turn the optimism into improved outcomes. To prevent and delay the onset of dementia, we are and have already been acting and intervening to influence the risk factors. We know that we can influence them. For instance, the known risk factors for dementia, similar to other conditions such as cardiovascular disease, include high blood pressure, obesity, diabetes, smoking, poor diet and lack of physical activity. These are things that we can and are intervening in.
For instance, we offer a health check for all adults aged between 40 and 74 in England to identify the early signs of stroke, kidney disease, heart disease, type 2 diabetes and, indeed, dementia. Dementia was incorporated specifically into that health check, in part to raise awareness of the fact that people can make a difference and reduce their risk of dementia, and to motivate people to take steps to reduce that risk. There is a much greater awareness that people can make a difference and reduce their risk of suffering from heart disease or diabetes. Alzheimer’s Research UK has found that about 70% of people know that they can reduce those risks, but less than a third of people know that they can reduce their risk of and prevent themselves from getting dementia. We have offered that health check to over 9 million people, and about 3.7 million people have had it already. We will continue to encourage people to take that up.
Looking ahead, there is more that we can, should and, indeed, will do to prevent people from suffering ill health, prevent dementia and help people to maintain their health. That is at the core of our major conditions strategy, to which my right hon. Friend the Member for Ashford referred. Crucially, that includes dementia, alongside the five other major conditions that represent the major burden of ill health in the country, including cancer and cardiovascular disease.
The hon. Member for Bristol South questioned the point of having a standalone dementia strategy. Actually, it is very important to include dementia with other major conditions and major causes of ill health, partly because we are moving towards having a society in which many people suffer from multiple health conditions. In fact, many older people will have dementia alongside other health conditions, so it makes sense to look at people’s health in the round, not just pick one condition.
As I mentioned a moment ago, dementia is a common risk factor for many major conditions, so it makes sense for our health system not to look at any condition in isolation, but to look at how we can improve people’s health in the round and reduce their risks. The major conditions strategy is absolutely the place where I point right hon. and hon. Members to look at our evolving Government strategy to address some of the health and lifestyle factors, to move into prevention and to support people in the event that they receive a dementia diagnosis.
The other area where there is cause for optimism is the progress that is being made in the research and development of new treatments. Finding a treatment to slow or, indeed, cure dementia, rather than just manage it, would change the implications of receiving a diagnosis and make such a difference to thousands or even millions of people in the UK and globally. This is a challenge that we share with many other countries, particularly those in the developed world, and we are rightly collaborating internationally on research.
Since 2018, the Government have spent over £454 million on supporting dementia research. In 2019, we made a manifesto commitment to double our funding for dementia research to at least £160 million a year. We have since launched the Dame Barbara Windsor dementia mission, backed by £95 million of Government funding. The UK Dementia Research Institute, of which the Government are a founding member, recently announced a new partnership with the British Heart Foundation to establish a centre for vascular dementia, backed by £9 million-worth of funding. Vascular dementia is the second most common form of dementia, affecting around 150,000 people in the UK. We are determined to be a world leader in dementia research and to be recognised as such.
I turn to some of the new treatments. My right hon. Friend the Member for Ashford referred to lecanemab and donanemab as two of the treatments about which there is great excitement. Crucially, the Government want to make sure that treatments are made available to people as soon as possible through the national health service. It is important to sound a note of caution, because we know that such treatments do not come without side effects; in fact, the trials saw some significant side effects, such as the risk of brain bleeds. As ever, it is very important that we follow the proper processes that we have in place to assess the use of treatments by the national health service. That includes both licensing through the MHRA and evaluation by NICE. For the two drugs I mentioned, those processes will happen during the course of this year.
My right hon. Friend asked what NICE takes into consideration in its evaluation. I can assure him and other Members that NICE takes into account all health-related costs and benefits, including the health benefits to carers of a treatment. It also considers the publicly funded cost of social care, so there is a social care element taken into consideration by NICE. I say that very specifically: I wanted to make sure, so I have double-checked in order to be accurate in saying it in this Chamber this afternoon.
I acknowledge and recognise the points that my right hon. Friend and others have made about the impact on unpaid carers and the economic cost. It is true that there is a limit to the costs that NICE considers. Clearly, looking at all the possible broader economic costs involved would have implications not only for dementia treatments but for the many other treatments that NICE considers. As that is a very big question, not just one that is pertinent to dementia, it is probably worthy of a separate conversation in its own right. Nevertheless, I assure him and other hon. Members here today that the publicly funded cost of social care is taken into account by NICE in its evaluation process.
There is also the question of the readiness of the national health service to make drugs available if they are successful through both the licensing process and the NICE evaluation. I assure hon. Members that NHS England is indeed working to ensure that the NHS is ready to support the adoption of new treatments, including the diagnosis processes that will be needed, while recognising—I believe the hon. Member for Oldham East and Saddleworth referred to this—that new treatments are likely to require greater access to forms of diagnosis such as PET scans and lumbar punctures, and also recognising that such treatments are likely to require earlier diagnosis in order to be effective.
One thing that I look forward to is that, particularly as treatments that require an earlier diagnosis become available, more people will come forward to seek a diagnosis, as they recognise that getting an earlier diagnosis will really make a difference, and then there will then be access to treatment. I feel optimistic that we will see a virtuous cycle where people learn that getting an early diagnosis can really make a difference in getting access to treatment.
I commend my right hon. Friend on his speech. Like many, he has his own experience of dementia with his father, which has clearly informed the significant work that he has done in this area. He spoke about some of the statistics, which I will come on to, and about how a dementia diagnosis can be a bleak prospect. He also spoke about some glimmers of hope for people with dementia and for us as a society—for instance, the fact that dementia can be preventable for some people; our growing understanding of the importance of brain health and how we achieve it; and the progress being made towards treatments that can genuinely make a difference in the future for people with dementia. I heard his specific question about the evaluation by NICE of the treatments and whether the evaluation approach is fit for purpose; I will come on to that shortly.
My right hon. Friend also talked about the importance of better and earlier diagnosis. Indeed, he mentioned that, at the moment, more than a third of people who have dementia are estimated not to have a diagnosis, although, clearly, the other side of that is that about two thirds of people do have a diagnosis. Although we know that the pandemic hit our ability to diagnose people, we have seen some recovery in the diagnosis rate since the pandemic. It is now at the highest level for three years. He rightly said that, overall, for this area, as for many others, prevention is at least as important as a cure. He spoke about the opportunity, in that dementia diagnosis should no longer be a life sentence for this generation, which is an uplifting prospect for all of us involved.
We also heard from the hon. Member for Oldham East and Saddleworth (Debbie Abrahams), who spoke about her experience with dementia and how she cared for her mother Angela when she had Alzheimer’s, until she died. I have huge respect for her, knowing how difficult that must have been. She is also extremely knowledgeable about dementia and spoke about the many different sub-types of dementia, and I thank her for her work as the chair of the all-party group on dementia.
The hon. Lady spoke about hospital stays for people with dementia; a significant number of people are in hospital with dementia. As part of my brief, I have oversight of discharges from hospital and urgent emergency care, and I have spent a lot of time thinking about the flow through hospitals. I think a lot about people with dementia and how we can support them to be discharged to the best place for their care afterwards, or how we can avoid long stays in hospital for them. It can then be so difficult for them to be discharged, given the potential deconditioning that happens to people in hospital.
The hon. Lady rightly talked about how dementia is now the No. 1 cause of death in the UK, but it should not be seen as inevitable for us as we age, and in an ageing society. I heard her three asks, calling for dementia to be diagnosed more often at an early stage; for us to do better at diagnosing sub-types of dementia; and for us to improve access to PET scans and lumbar punctures for diagnosis. I will come to some of those points in a moment. I can definitely agree with the Opposition spokesperson, the hon. Member for Bristol South (Karin Smyth), that we have heard speeches from formidable colleagues in the debate, as well as from a number of others who joined us and contributed through interventions.
I will start with the impact of dementia. We know that close to 1 million people in the UK suffer from dementia. Around 900,000 people over the age of 65 and almost 50,000 people under the age of 65 are estimated to have dementia. We expect those numbers to increase to more than 1 million by next year and more than 1.5 million by 2050.
The stats are one thing, and they clearly point to the scale of dementia in our society, but they do not necessarily bring to life the human cost of dementia—what it means for people who have it, their families and friends, what it means practically for someone with dementia and those close to them, and what the challenges are of living with dementia or caring for somebody with it. There are significant financial burdens, both on people working who are then diagnosed and may be unable to work, so they have lost income, and on carers, who may have to cut back their work hours or leave work altogether. There are then the financial costs of professional care, whether that is state-funded social care for those who receive it, or self-funded care.
Most significantly, there is the emotional cost of dementia—what the diagnosis means for the individual who learns what is making life so difficult for them and knows the prospects ahead as the disease progresses, what it means for those they love, and what the experience is like for people who are close to them and care for them. It can be very difficult to care for somebody while at the same time feeling as if the person they know and love is being stolen from them. That emotional cost is unquantifiable, but we know that it hits very hard.
Like other hon. Members, I feel that I have painted a pretty bleak picture of what dementia means to our society, but I have no doubt that there are real reasons for optimism. First, we now understand that a significant proportion of dementia—it is estimated to be around 40%—is either preventable or at least delayable, and that we can actually make a difference. Secondly, real progress is now being made in the research into treatments, and there is the prospect of treatments becoming available that will genuinely make a difference to the progress of the disease. There are real reasons for optimism, although, as a Government Minister, I feel that optimism on its own is not enough.
The question that I am sure hon. Members would like me to answer is what we are actually doing to realise this potential and turn the optimism into improved outcomes. To prevent and delay the onset of dementia, we are and have already been acting and intervening to influence the risk factors. We know that we can influence them. For instance, the known risk factors for dementia, similar to other conditions such as cardiovascular disease, include high blood pressure, obesity, diabetes, smoking, poor diet and lack of physical activity. These are things that we can and are intervening in.
For instance, we offer a health check for all adults aged between 40 and 74 in England to identify the early signs of stroke, kidney disease, heart disease, type 2 diabetes and, indeed, dementia. Dementia was incorporated specifically into that health check, in part to raise awareness of the fact that people can make a difference and reduce their risk of dementia, and to motivate people to take steps to reduce that risk. There is a much greater awareness that people can make a difference and reduce their risk of suffering from heart disease or diabetes. Alzheimer’s Research UK has found that about 70% of people know that they can reduce those risks, but less than a third of people know that they can reduce their risk of and prevent themselves from getting dementia. We have offered that health check to over 9 million people, and about 3.7 million people have had it already. We will continue to encourage people to take that up.
Looking ahead, there is more that we can, should and, indeed, will do to prevent people from suffering ill health, prevent dementia and help people to maintain their health. That is at the core of our major conditions strategy, to which my right hon. Friend the Member for Ashford referred. Crucially, that includes dementia, alongside the five other major conditions that represent the major burden of ill health in the country, including cancer and cardiovascular disease.
The hon. Member for Bristol South questioned the point of having a standalone dementia strategy. Actually, it is very important to include dementia with other major conditions and major causes of ill health, partly because we are moving towards having a society in which many people suffer from multiple health conditions. In fact, many older people will have dementia alongside other health conditions, so it makes sense to look at people’s health in the round, not just pick one condition.
As I mentioned a moment ago, dementia is a common risk factor for many major conditions, so it makes sense for our health system not to look at any condition in isolation, but to look at how we can improve people’s health in the round and reduce their risks. The major conditions strategy is absolutely the place where I point right hon. and hon. Members to look at our evolving Government strategy to address some of the health and lifestyle factors, to move into prevention and to support people in the event that they receive a dementia diagnosis.
The other area where there is cause for optimism is the progress that is being made in the research and development of new treatments. Finding a treatment to slow or, indeed, cure dementia, rather than just manage it, would change the implications of receiving a diagnosis and make such a difference to thousands or even millions of people in the UK and globally. This is a challenge that we share with many other countries, particularly those in the developed world, and we are rightly collaborating internationally on research.
Since 2018, the Government have spent over £454 million on supporting dementia research. In 2019, we made a manifesto commitment to double our funding for dementia research to at least £160 million a year. We have since launched the Dame Barbara Windsor dementia mission, backed by £95 million of Government funding. The UK Dementia Research Institute, of which the Government are a founding member, recently announced a new partnership with the British Heart Foundation to establish a centre for vascular dementia, backed by £9 million-worth of funding. Vascular dementia is the second most common form of dementia, affecting around 150,000 people in the UK. We are determined to be a world leader in dementia research and to be recognised as such.
I turn to some of the new treatments. My right hon. Friend the Member for Ashford referred to lecanemab and donanemab as two of the treatments about which there is great excitement. Crucially, the Government want to make sure that treatments are made available to people as soon as possible through the national health service. It is important to sound a note of caution, because we know that such treatments do not come without side effects; in fact, the trials saw some significant side effects, such as the risk of brain bleeds. As ever, it is very important that we follow the proper processes that we have in place to assess the use of treatments by the national health service. That includes both licensing through the MHRA and evaluation by NICE. For the two drugs I mentioned, those processes will happen during the course of this year.
My right hon. Friend asked what NICE takes into consideration in its evaluation. I can assure him and other Members that NICE takes into account all health-related costs and benefits, including the health benefits to carers of a treatment. It also considers the publicly funded cost of social care, so there is a social care element taken into consideration by NICE. I say that very specifically: I wanted to make sure, so I have double-checked in order to be accurate in saying it in this Chamber this afternoon.
I acknowledge and recognise the points that my right hon. Friend and others have made about the impact on unpaid carers and the economic cost. It is true that there is a limit to the costs that NICE considers. Clearly, looking at all the possible broader economic costs involved would have implications not only for dementia treatments but for the many other treatments that NICE considers. As that is a very big question, not just one that is pertinent to dementia, it is probably worthy of a separate conversation in its own right. Nevertheless, I assure him and other hon. Members here today that the publicly funded cost of social care is taken into account by NICE in its evaluation process.
There is also the question of the readiness of the national health service to make drugs available if they are successful through both the licensing process and the NICE evaluation. I assure hon. Members that NHS England is indeed working to ensure that the NHS is ready to support the adoption of new treatments, including the diagnosis processes that will be needed, while recognising—I believe the hon. Member for Oldham East and Saddleworth referred to this—that new treatments are likely to require greater access to forms of diagnosis such as PET scans and lumbar punctures, and also recognising that such treatments are likely to require earlier diagnosis in order to be effective.
One thing that I look forward to is that, particularly as treatments that require an earlier diagnosis become available, more people will come forward to seek a diagnosis, as they recognise that getting an earlier diagnosis will really make a difference, and then there will then be access to treatment. I feel optimistic that we will see a virtuous cycle where people learn that getting an early diagnosis can really make a difference in getting access to treatment.
Debbie Abrahams
I am reassured to some extent by what the Minister says, and I am grateful for her tone and her positive approach. Given the inequality—let us call it what it is—in current diagnosis, and these are non-specific dementia diagnosis rates, have she and her Department conducted any analysis of the gaps in more specific PET and CSF testing? Can she publish that data or write to us with it? That would reassure us, because rather than just hoping something will happen, we could identify it: “Yes, in Greater Manchester we are at 90% of the level we need for all these tests,” and similarly in Kent and so on. If she could do that, it would be very helpful.
15:58:19
Helen Whately
I fully appreciate the hon. Member’s question, and I can assure her that I do look at the variation in diagnosis rates between different areas, as she rightly pointed out in her speech. I would be happy to write to her with further detail on the specific question of more sophisticated diagnosis techniques and our readiness for new treatments and for carrying out earlier and more sophisticated diagnoses.
I assure hon. Members of the Government’s ambition for the UK to be a world leader in dementia research, diagnosis and treatment; I would also like us to lead the world in the prevention of dementia. That is why the Government are investing in research. We are getting ready to make new treatments available and building on what we are already doing in prevention with our major conditions strategy. Given the scale and impact of dementia on our society, successful prevention and treatment are not just a nice-to-have, but an imperative for individuals, for their families, friends and loved ones, and for our society.
I assure hon. Members of the Government’s ambition for the UK to be a world leader in dementia research, diagnosis and treatment; I would also like us to lead the world in the prevention of dementia. That is why the Government are investing in research. We are getting ready to make new treatments available and building on what we are already doing in prevention with our major conditions strategy. Given the scale and impact of dementia on our society, successful prevention and treatment are not just a nice-to-have, but an imperative for individuals, for their families, friends and loved ones, and for our society.
16:01:59
Damian Green
I will spare hon. Members the thought that I could go on for another half an hour, I think, under the rules—[Interruption.] I can hear shouts of “More!” from the Minister. I thank all those who have taken part, particularly my fellow APPG chair, the hon. Member for Oldham East and Saddleworth (Debbie Abrahams). There is clearly a Venn diagram with an overlap between the APPGs on adult social care and on dementia; we share an interest in this as chairs, as well as an interest driven by personal history.
I hear what the Minister says about the NICE funding decision-making algorithm. Through her, I urge NICE to be as open-minded as possible as to what costs it takes into account. I do take the Minister’s point that one can perhaps extend the boundary of what costs are caused by any particular medical condition beyond what is reasonable. However, I think the costs to the economy of those who are not working only because they are caring for someone with dementia are a genuinely legitimate cost that could be taken into account when assessing the economic viability or effect of introducing a particular treatment. I hope that the NICE guidelines can reflect that. Otherwise, I am very grateful to have had the chance to raise these subjects in this debate.
Question put and agreed to.
Resolved,
That this House has considered the matter of new dementia treatments.
I hear what the Minister says about the NICE funding decision-making algorithm. Through her, I urge NICE to be as open-minded as possible as to what costs it takes into account. I do take the Minister’s point that one can perhaps extend the boundary of what costs are caused by any particular medical condition beyond what is reasonable. However, I think the costs to the economy of those who are not working only because they are caring for someone with dementia are a genuinely legitimate cost that could be taken into account when assessing the economic viability or effect of introducing a particular treatment. I hope that the NICE guidelines can reflect that. Otherwise, I am very grateful to have had the chance to raise these subjects in this debate.
Question put and agreed to.
Resolved,
That this House has considered the matter of new dementia treatments.
Sitting adjourned.
Contains Parliamentary information licensed under the Open Parliament Licence v3.0.