New Dementia Treatments

Debbie Abrahams Excerpts

Thursday 11th January 2024 Westminster Hall

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

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.

--- Later in debate ---

[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.

[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.