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NHS: Dementia Commission Report

Volume 836: debated on Thursday 22 February 2024


Asked by

To ask His Majesty’s Government what actions they are taking in response to the NHS Innovation and Life Sciences Commission’s Dementia Commission: 2023 Report.

We welcome the Dementia Commission: 2023 Report and are taking steps to address each of the recommendations. The Government remain committed to improving dementia diagnosis rates and providing high-quality care and support following a diagnosis. The Government have committed to double funding for dementia research to £160 million per year by the end of 2024-25. We welcome all research that will help us to improve how we diagnose and care for people with living with dementia.

My Lords, the commission’s wide-ranging and comprehensive report is very welcome, but it heavily reinforces the urgent need for radical change in the way we diagnose, treat and care for dementia patients and support their families and carers. To ensure timely, speeded-up diagnosis, the training of primary care practitioners in dementia-specific symptoms and diagnostic methods is crucial. What steps are the Government taking to strengthen general practice and community pharmacy in this regard so that individuals with dementia can receive appropriate care and support as early as possible?

I thank the noble Baroness for this Question. As ever, I have found that one of the real strengths of being in this position is that the questioning here makes me explore an area. This has been another area which I have enjoyed and found fascinating. Early detection is absolutely key, and what I have been learning from that is that, yes, we need to arm primary care staff and a potentially vital front line in terms of primary care staff are opticians, because retinal scans are a really good way to early diagnose. Apparently, people more than ever will have a frequent eye check. I have pulled together a panel to understand this more, and I invite the noble Baroness and others so that we can look at the latest research and really understand this more.

My Lords, I welcome the additional sums of money that the Government are putting into this service, which is very important, but, as the Minister will be aware, and as he indicated in his response to the noble Baroness, Lady Wheeler, around 36% of those with this condition are undiagnosed, and that rises to around 50% in some authorities. The Minister will be aware that some exciting new drugs are coming on to the market that help to delay the onset of this terrible condition. What are the Government doing to raise awareness so that there is early diagnosis and those with the condition can access those services much sooner?

My Lords, I thank my noble friend, who is absolutely right. This is where things such as the Barbara Windsor Dementia Mission have been successful in raising awareness, as she states. The challenge in all this, as I have learned, is that because it is such a slow-moving disease it is difficult to see how it progresses. Apparently, it has one of the lowest failure rates in terms of drugs because it is really hard to monitor the progress behind it. That is why work is being done, such as retina scans, where you can measure data objectively. There is real hope in all this, and it means that we need to make all primary care workers aware of the situation.

My Lords, the commission recommends the creation of dynamic care records for dementia patients and their carers. We know from experience that information projects such as this work best when they have a clear owner who wakes up every morning worrying about delivering them. Who in the NHS owns the delivery of dynamic care records for dementia patients? If that person turns out not to exist when he goes to look for them, would he consider appointing someone?

Yes, that is a very good point. For me, as I have looked into this, the reason for assembling the panel that we can all interrogate is that we have the value of different noble Lords in this House who can add those points to it. What the noble Lord said sounds sensible. The honest answer is that I do not know whether there is such a person today, but let us use this as an opportunity to find out, because I think there should be.

My Lords, there are several important points in development that should allow us to better manage people with dementia. The first is early diagnosis, as has been mentioned, but we need greater input into research in developing biomarkers that detect early development of the disease. Having done so, we then need drugs that will be effective in early phases of the disease—so-called disease-modifying treatments. Some of those have recently been given accelerated approval in the United States and Japan, but they are very expensive drugs. As we discussed last week, one of the drugs for small-cell lung cancer failed at the final endpoint, so we have to be guarded. For instance, the drug lecanemab, which has been approved, would use up half the pharmaceutical costs of all the 27 countries of Europe. These two things are important, and I hope that the forum that is developing will address those issues of research.

As ever, my colleague the noble Lord is correct. The blood biomarkers are central to this. We have set up the NIHR biomarker challenge to try to understand those, and my understanding is that a Swedish blood test is quite promising. NICE is bound to approve the two early-stage drugs that the noble Lord mentioned over the summer, in July and September, but then we need to look at scale-up issues. Often, we are talking about having to deliver them through drips, which means a whole workforce scale-up. So there are a lot of issues around this that the noble Lord rightly brings up, and I hope the panel can discuss them further.

My Lords, I would like to ask the Minister about the role of music therapy in helping dementia patients. It is well known that when someone listens to music, sometimes it takes them back to a place and time immediately. There has been research on the role of music therapy. I quickly skim-read the report but did not see music therapy mentioned in any way or in detail. If I am wrong, perhaps the Minister can correct me, but could he also tell me about the role that music therapy can play?

My noble friend is correct; I did not see reference in my noble friend Lord O’Shaughnessy’s report to music therapy either. I am familiar with some of the principles behind it. My personal experience myself with the elderly dementia patient that I cared for was that bringing my five year-old son along took them out of their position and made them care for that child and forget about their own situation. Those sorts of therapies—and music is similar—have a vital role that we will look into further as part of this plan.

My Lords, the Alzheimer’s Society has a good report out called Dementia: What Every Commissioner Needs to Know, about Alzheimer’s care. What is the Government’s view on ensuring that ICBs across the country have a minimum standard of commissioning levels for people with dementia?

We have set out a dementia good care planning guide to exactly those commissioners because, as ever, we need uniformity in these areas. Part of the strength of ICBs is that they have freedom to deliver local services, but we have to make sure that they are always achieving at least the minimum levels that the noble Lord referred to. That is what the guidelines are about, and we are setting monitoring against that to make sure that they are delivering on it.

My Lords, I have two questions. First, I understand that NICE will review rather than approve the drugs in question. Secondly, it appears that they extend life but that the end of life is still very similar, so what do the Government intend to do to ensure that carers have sufficient respite and that there is a standard ratio of Admiral nurses to support families, certainly for the next decade until science gives us the answer?

The noble Baroness is correct that the science is unfortunately not there yet. That is why we are investing £160 million a year in research, because more needs to be done. In the meantime, and I suspect for ever, we will need to make sure that support networks are around this space, and the voluntary care sector, for want of a better phrase, is a vital part of that. We are making moves towards it; we are giving respite care and making some payments. I freely admit that there is more we could be doing in this space, but we have done quite a bit as well.

My Lords, my husband, having had two strokes, was part of a project called OPTIMA, so he left his brain to that project. When the report was sent to me, OPTIMA assured me that my husband had had vascular dementia, not Alzheimer’s.

My Lords, with an ageing population it is inevitable that this illness is going to increase in prevalence across the population. Do the Government have any intention of building into their strategy for caring for dementia the support, perhaps in the workplace, that might be needed, particularly for older women, who tend to be predominantly carers, maybe via insurance in the workplace for respite and for carer’s leave, in order to ensure that this is not such a strain on both the families and the public purse?

There is recognition in all these things that the workplace has a role here. I have looked at treatments and outcomes in the G7 countries, and Japan is often a good example of having care in the workplace, as my noble friend is aware. As so often, it is about making people realise that this is everyone’s problem to deal with. I will do more work to understand what we are doing to arm employers for that, and I will come back to my noble friend.