Inequalities in Dementia Services

Debbie Abrahams Excerpts

Thursday 16th May 2024 Westminster Hall

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

I beg to move,

That this House has considered inequalities in dementia services.

It is a pleasure to serve under your chairship, Ms Rees. I thank the Backbench Business Committee for granting me this debate to discuss the huge inequalities in dementia diagnosis and other services across the country. I also thank the Alzheimer’s Society for providing the secretariat to the all-party parliamentary group on dementia and for supporting our many inquiries, including the inquiry we conducted into dementia diagnosis last week, which was published in our “Raising the Barriers” report. My particular thanks go to Lewis and Connor for their briefings and for helping me to prepare for this debate.

It is a real honour to have recently been re-elected as co-chair of the all-party parliamentary group on dementia, a position that I have held since 2015. My other co-chair is Baroness Angela Browning, and like Angela I became involved in the APPG because I became a carer of a loved one who developed one of the brain diseases that cause dementia. In my case it was my mum, who was also called Angela. She was diagnosed with Alzheimer’s disease in 2002, when she was just 64, and I cared for her along with my stepfather and brother. After she died in 2012, I became the first MP to train as a Dementia Friends champion and was subsequently elected as co-chair of the APPG on dementia in 2015.

This debate could not be more timely. As you know, Ms Rees, this week marks Dementia Action Week. Yesterday I had the pleasure of sponsoring the Alzheimer’s Society’s reception in Parliament for Dementia Action Week, where we welcomed many Members to hear about the importance of a dementia diagnosis and the transformative potential of new treatments for dementia. Back in January, I spoke in another Westminster Hall debate looking at the advent of new treatments, particularly lecanemab and donanemab. Those drugs have caused huge excitement, as they mark the first ever treatments for people in the early stages of Alzheimer’s disease and could change the way that we see dementia forever. However, even in that debate I highlighted the barriers to those drugs being delivered to patients and sounded a note of caution that they are neither a cure nor a quick fix. I was really reassured that the approval of lecanemab and donanemab is going through the regulatory cycle at the moment, and we hope to hear when they will be available in the next couple of months.

The fact of the matter is that dementia is a monumental pressure on our health and social care system, but it is all too often an afterthought in commissioning. It is not commonly known that dementia is the leading cause of death in the UK. Nearly 1 million people have dementia, but of those one in three currently live without a diagnosis. Dementia costs the economy more than £40 billion each year, and more than 60% of that cost is borne by individuals and families. Those facts may come as a surprise to many, including many commissioners, but I will focus today on two important inequalities in dementia: the inequality in dementia diagnosis rates between different parts of the country and different groups of people, and the inequality between those who do and do not have access to post-diagnostic support.

First, I will share some information that hon. Members will hopefully find useful. When we talk about dementia, we are using a collective term covering the common symptoms associated with a range of brain diseases. Alzheimer’s disease is the most common of those, but they also include vascular dementia, which my mother-in-law had, Lewy bodies, frontotemporal dementia and many others. Each of those brain diseases has different pathology and as a consequence will have different therapies.

Right now, more than 900,000 people live with dementia in the UK, as I mentioned. Due to our ageing population, that figure is set to rise to 1.6 million by 2040, but I need to stress that dementia is not an automatic part of ageing, although it is more prevalent in older populations. People with dementia account for more than 70% of the residential care home population over the age of 65 and 60% of people receiving home care. Meanwhile, as revealed by NHS performance data published earlier this year, it is estimated that a quarter of NHS beds are occupied by people with dementia. They remain in hospital on average twice as long as people who do not live with the condition. Unfortunately, that reflects the crisis in our social care system and not being able to safely discharge people back into the community or to residential care.

I reflect on where we are in relation to our social care system and the opportunities that we have had, for example through the Dilnot proposals back in 2015, and I really do hope that focused the minds of all of us in what we do. I certainly will be supporting, and have for many years been supportive of, a national care service.

Diagnosis is the key that unlocks vital care and support for people living with dementia, particularly those who are struggling to manage their symptoms alone. It helps people to understand their condition. It allows them and their loved ones to start planning for the future but, as I mentioned earlier, currently just one in three people estimated to have dementia receive a formal diagnosis. The benefits to receiving a diagnosis are massive—access to new treatments and to the care and support that is needed. Alzheimer’s Society reported earlier this week that 91% of people with a dementia diagnosis saw real benefits to having received one. However, the dementia diagnosis rate in England dropped from 67.6% to 61% during the covid pandemic. Currently it is 64.8% in England—below the national target of two thirds.

[Andrew Gwynne (Denton and Reddish) (Lab)]

I am very grateful to my hon. Friend for giving way and I commend her, not only for securing this debate but for the powerful work she does in this area of policy. She raises the national target for two thirds of people with dementia to be diagnosed. That is not nearly ambitious enough. Is she also concerned that there are huge variances across the country? How can it be that a place like Stoke can get 90% diagnosis and a place like Swindon 50%?

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

I am very grateful to my hon. Friend for his intervention. This is the absolute crux of the issues we are facing. First of all the target is not ambitious enough, but as he rightly says there are these inequalities. I prefer calling a spade a spade, so these are inequalities and we need to call them what they are. Although the national picture is poor, if we dig further into the data we can see that there is a huge regional inequality in dementia diagnosis rates. In my Oldham constituency, for example, the rate is above 75% and in Devon it is just 40%. Where you live has a massive impact on whether you get a timely, accurate and high-quality dementia diagnosis. A postcode lottery on this scale for a condition that will affect one in three of us is not acceptable.

The APPG’s dementia diagnosis inquiry revealed several issues. There are significant differences in the dementia diagnosis rates between integrated care system areas in England. The report referred to a recent Alzheimer’s Society survey of clinicians, clinical commissioning groups—the predecessors of the ICSs—and dementia support workers. Poverty and health inequalities were identified as major barriers to getting a dementia diagnosis. This was also borne out by analysis by the Office for Health Improvement and Disparities. I have to say I do not particularly like the title of that organisation; I think it should be the “Office of Health Improvement and Inequalities”.

Similarly, there were lower rates of diagnosis in ethnic minority populations. For example, the City of Wolverhampton has an overall diagnosis rate of 70%, but just 35% for people from an ethnic minority community.

Alzheimer’s Research UK also undertook an analysis and published a report last October—“Towards Brain Health Equity: Tackling Inequalities in Dementia Risk”—and this highlighted research identifying vulnerable groups and the dementia risk that they face. That is also an inequality. It referred to research in England and Wales that showed that socioeconomic deprivation and ethnicity are linked to increased dementia mortality, younger age at death from dementia and poorer access to specialist diagnostics. A number of recommendations were made around that. We know that there are 12 modifiable risk factors associated with dementia, and the report focused on action around reducing air pollution, lowering smoking rates, healthy eating, tackling higher blood pressure and identifying and treating hearing loss.

Returning to our APPG inquiry, we received input from more than 2,300 people and I thank them sincerely. Those people have gone through—either themselves or with a loved one—a dementia diagnosis process. They shared their experiences in our survey and we found that every part of the country produced different experiences of the diagnosis system. In Somerset, for example, people were most likely to report that they were satisfied with the time it took for them to receive a diagnosis but were least likely to say that they received satisfactory post-diagnostic support. In London, respondents had the best access to brain scans but found it most difficult to access GP appointments. I know that £17 million was invested in dementia diagnosis by the Government in 2021-22 and that part of that money was to develop best practice advice.

[Andrew Rosindell (Romford) (Con)]

I commend the hon. Lady for calling this debate and for her work through the APPG. I say to her, and to the Minister, that today we are seeing more people being diagnosed with dementia and dying than is the case with other conditions, such as heart disease and cancer. Why does the hon. Lady think we are not investing more resources in research and support for people who suffer from this terrible condition?

[Debbie Abrahams]

The hon. Member is absolutely right; there is less money going into research. On why there is not more done about it, the hon. Member really needs to direct that question to the Minister. I have set out all the evidence that says it should be a priority for the families and individuals affected and a priority for our society, and it should also reflect how we organise our care system, given that predominantly the people in the care system are those living with a diagnosis. The hon. Member will therefore have to direct that question to the Minister.

Going back to my point about the investment made in 2021-22, can the Minister update us on how that is going and the improvements that she may not see immediately but which she hopes to see? Clearly, that is something we need to see as part of the levelling-up agenda.

As I said before, 2,300 people filled out our online survey and shared their stories to inform our work. Sadly, just 5% of people’s stories were positive. Five per cent: that is awful, is it not? After a constituent came to see me regarding concerns about the delay for her mother’s diagnosis—it took her 15 weeks to get an appointment for her mother to attend for a dementia diagnosis, during which time she noticed a considerable decline in her cognitive health—I tabled some written questions on the proportion of people waiting more than 15 weeks for an initial dementia diagnosis and the average waiting time for an assessment. I was told in response on 22 January 2024 that those data were “not held centrally”. I find that extraordinary. National strategies should not just reflect the evidence and data for a national profile around dementia, so we should agree that that needs to change.

[Andrew Rosindell]

My constituency is in the London borough of Havering, with the second highest number of older people in the whole of Greater London. At the moment, on average it takes over 16 weeks to get a diagnosis. Of course, the quicker the diagnosis the better, so it is important that we reduce the length of time that people have to wait to know the condition they are suffering from. Consequently, I fully support the hon. Lady in urging the Government to make earlier diagnosis a greater priority.

[Debbie Abrahams]

I am very grateful to the hon. Member for that intervention, and I absolutely agree.

All of that underlines the importance of improving the dementia diagnosis pathway and making it work better for people living with dementia and their loved ones. The APPG has developed a series of recommendations across the core themes of dementia diagnosis, data, workforce, and public health messaging. Collectively, these recommendations outline how dementia pathways can be strengthened to enable access and quality care across all settings, communities and regions in England. I would be grateful if the Minister could say what work the Department is undertaking in those areas to reduce inequalities in the experience of dementia between localities and population groups.

I turn now to the inequality between those who have post-diagnostic support for dementia and those who do not—or, perhaps more insidiously, the gap between what people with dementia are supposed to receive and what they actually receive. Guidance states that people living with dementia should be offered a review with a healthcare professional at least once a year. However, just 25% of people with dementia who were polled by the Alzheimer’s Society said that they or their loved one had had an annual dementia review within the last 12 months, and only 16% said that they had received enough support from local services in the last 12 months. In addition, more than half said that, even if they had received an annual dementia review, it did not help them feel more able to manage their condition.

This trend continues outside primary care and in allied health professions. Over half of people with dementia who have been signposted to mental health services report having to wait up to a year for treatment. Evidence shows that mental health treatments can be effective in treating depression and anxiety symptoms associated with dementia, but just 0.002% of referrals to NHS talking therapies are for people with dementia—that is 2,000 people out of 1 million referrals.

A quarter of people with dementia wait for up to a year for occupational therapy after referral. Occupational therapy can help people to avoid dangerous falls and to live well in their own home for as long as possible. The average time spent in hospital for a hip fracture is seven days, but patients with dementia stay in hospital for up to four times longer a hip fracture. The additional cost—I know it should not be just about cost, but there is an associated cost—is almost £6,000 per patient, which is far more than the cost of an occupational therapy appointment. I have to say that I just do not get why we are prioritising things in this way.

I do not want to reduce health and social care decisions purely to finance, but the fact of the matter is that early intervention for people with dementia saves so much money. The Alzheimer’s Society reported on Monday that the cost of dementia to the UK economy is £42 billion a year, and that figure will skyrocket to £90 billion by 2040 because of our ageing population. The cost of dementia rises significantly as the condition progresses. The average cost of care for someone in the early, or milder, stages of dementia is about £28,000 a year; in the later, severe stages of dementia, it rises to well over £80,000 a year. Caring well for people with mild dementia can prevent falls and infections, which cause unnecessary hospitalisations and deconditioning, which increase the speed of deterioration in people with dementia. Early identification and increased spend in the early stages of dementia pay dividends further down the pathway.

I would like to end by putting three questions to the Minister, and I would be grateful if she could address them in her response or in writing at a later date, if that is easier for her. First, what will the Department do to ensure that where someone lives, their socioeconomic status or their ethnicity do not negatively affect their likelihood of getting a dementia diagnosis? Secondly, what will the Department do to ensure that everyone with dementia has access to high-quality, post-diagnostic care, regardless of where they live? Thirdly, it was two years ago this week that the right hon. Member for Bromsgrove (Sir Sajid Javid) announced a 10-year plan for dementia, which was then folded into the major conditions strategy. However, we still do not know when that strategy will be published. Can the Minister update us on when we can expect publication of the strategy?

Dementia is a monumental health and social care challenge, and will be the defining test of our system in the decades to come—I have absolutely no doubt of that. We have spoken in this place about planning for the next generation of dementia care in the context of the new, potentially transformative drugs that are currently under appraisal, but almost 1 million people are living with dementia in this country today, and much more can be done to get them the care and support they need and deserve at the earliest possible moment.

I would like to thank the Backbench Business Committee and those who have joined us on a Thursday afternoon when a lot is going on in Parliament. I look forward to the Minister’s response.

[Christina Rees (in the Chair)]

May I remind Members that they should bob if they wish to be called to speak?

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[Debbie Abrahams]

I will be very quick because I know that people have trains to catch, but I want to reiterate the Minister’s thanks to everybody for taking part. This has been a particularly nice debate in its collaborative approach, and I thank her also for saying that she will follow up on the data and whether it could be retained centrally. I also hope that there is evidence that has been supplied here and elsewhere that will help to strengthen the dementia aspect of the major conditions strategy. We have not spoken about type-specific diagnoses, so I ask the Minister to ensure that that is included, because access to the therapies will not be available without that.

Question put and agreed to.

Resolved,

That this House has considered inequalities in dementia services.