Inequalities in Dementia Services

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.

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%?

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.

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?

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.

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.

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.

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

It is always a pleasure to see you in the Chair, Ms Rees, so thank you for being here this afternoon. I pay tribute to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams). In preparation for today’s debate, I looked back in Hansard at previous contributions I had made in debates on dementia, and I was struck by the fact that every single one started the same way: by paying tribute to her. On every occasion I have spoken about dementia, it has been in a debate secured by her, and every time I have attended an event on dementia or Alzheimer’s, it has been hosted by her. She trained me in a workshop back in 2016 to be a dementia friend, and she is the most incredible advocate on behalf of all those living with dementia, and their carers and families. I really do, with all sincerity, pay tribute to her for the incredible work she has done on this cause.

We are blessed across Calderdale with some truly brilliant people and volunteers who work tirelessly to improve the lives of those living with dementia, their carers and their loved ones, and I will pay tribute to them later in my remarks. At a recent event at Halifax town hall, I was asked to host a Q&A with Scott Mitchell, who was married to the wonderful Barbara Windsor for 20 years before she passed away—six years after receiving a dementia diagnosis. Scott is one of the most incredible advocates for those with dementia, and it has been a pleasure to get to know him better following that event.

There are not many things Boris Johnson really got right in his time in office, but credit to him for setting up the Dame Barbara Windsor dementia mission, which launched in August 2022. I was so pleased that Scott was officially appointed the people’s champion for the dementia mission in March this year. Scott recently introduced both myself and the shadow Secretary of State for Health, my hon. Friend the Member for Ilford North (Wes Streeting), to the co-chair of the mission, Hilary Evans of Alzheimer’s Research UK. I am delighted to say that no one was left in any doubt that we 100% support the mission, and will very much do so if we have the opportunity and privilege to be in government in the not-too-distant future.

It is absolutely wonderful to hear about the work being done in Halifax. So much of that work in our own constituencies depends on voluntary support and voluntary organisations. I visited the Dementia Music and Social Club at the United Reformed Church opposite my office in Romford. Every Wednesday, that wonderful organisation brings together lots of people from all over Havering who are suffering with dementia; their friends and family go with them, and it is a very happy, fun afternoon. But the club gets no support, and they have to raise all their own funds—they get nothing from the local authority, the Government or any other funding streams. Does the hon. Lady agree that we need to do more to support local voluntary efforts? People need support; they need family and friends around them. Bringing together people who have the same condition is a light in their lives and gives back purpose. It is so important that we do more to support local communities to support people who are suffering with dementia.

The hon. Member is absolutely right. We have got into the real substance of the inconsistencies and the variations in rates of diagnosis. That really does highlight the inequalities that exist, depending on where someone is in the country. Beyond that, there is a real mix: there are so many local volunteers and brilliant groups that do so much good work, but that is not replicated evenly across the country. The hon. Member is quite right that the difference that some of the groups he mentioned make is transformative and a lifeline, not only for those living with dementia but for their families and carers—especially if those pop-up cafés and services are anything like the Memory Lane Café in Sowerby Bridge. He speaks of what great places they are to visit and be a part of. There is not that sadness; there is a shared sense of supporting each other, with lots of activities and lots of fun being had as well. That makes a really big difference to people’s lives, and the hon. Member is quite right that, with a little local authority and Government support, that could be replicated and enhanced and more people could be supported. The hon. Member makes a really important point.

In addition to the Memory Lane Café, we have a young-onset dementia and Alzheimer’s group set up by Julie Hayden, which provides support for younger people with dementia and for their carers. I know that is very much valued, especially by those of working age who have been diagnosed with dementia or Alzheimer’s really quite early in life. I also pay tribute to Inspector Neil Taylor of West Yorkshire police, who is the chair of Dementia Friendly Todmorden and a Dementia Friends ambassador. He has worked so hard to promote best practice within West Yorkshire police, establishing the Herbert protocol, whereby the police and other agencies encourage families and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The protocol takes its name from George Herbert—a veteran of the Normandy landings who lived with dementia. I am grateful to those people and to the others who make such a big difference. As we have said, they are all volunteers— they are unpaid—and that speaks to the very point of the debate.

It is a pleasure to serve under your chairmanship, Ms Rees. I yet again commend my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this debate and for her ongoing advocacy on the issue. I also thank the other hon. Members here; we are a small but perfectly formed debate.

I particularly thank my hon. Friend the Member for Halifax (Holly Lynch) for her important contribution. She is absolutely right to champion not only the important services being provided in her patch and across the country, but that desire to want better and to want more so that no person or family looking after somebody with dementia is left behind. That wraparound support is absolutely crucial. I also commend her and my hon. Friend the Member for Oldham East and Saddleworth on thanking those national and local organisations and charities, and the wonderful army of volunteers who keep dementia on the public policy platform.

I thank the hon. Member for Romford (Andrew Rosindell) for his important interventions. It is absolutely right that we have to approach how we deal with dementia in the 21st century on a cross-party basis. I hope that we can reach some consensus on what needs to be done, because never has the need for a clear, concerted focus on dementia been more pressing. It is one of the biggest health and social care issues facing our society. As my hon. Friend the Member for Oldham East and Saddleworth pointed out, almost 1 million people in the United Kingdom live with dementia—a figure that is expected to rise to 1.4 million by 2040.

Behind those numbers lie individual people with their own distinct circumstances and challenges and their own unique stories of living with dementia. It is a cruel condition that strips people of their fondest memories and causes devastation for families.

Dementia can impact anyone at any time. It is indiscriminate in the impact it can have, but we know that certain groups are at increased risk. We know that women are more likely to develop dementia than men. They are also more likely to be caring for a loved one living with dementia. We know that those from poorer and disadvantaged backgrounds are more susceptible to key dementia risk factors, with often limited access to health services.

I am very interested in some of the hon. Member’s comments. I am glad that he approaches the issue from a cross-party point of view. In my own borough of Havering, there are a vast number of older people. So many services for people who suffer with dementia depend on local authorities. In Havering, we do not get the additional funding we need to deal with the older population who need those services. If there were to be a change of Government, would he commit to helping boroughs like Havering by giving them more resources? Will that boroughs with large populations of older people who suffer with dementia get more support from the Government that the hon. Member may well serve in?

I would certainly hope and expect so. The way we are going to deal with the national care service is not to create a big, monolithic organisation to rival the NHS as some kind of super-organisation employing lots of people. The NCS will be about the centre setting out a clear national direction of how we deal with the challenges of social care: what the pay, terms and conditions of the workforce should be, and what the outcomes should be for people drawing on social care services. That strong centre sets out the “what”. The “how” has to be determined locally, because what works in Oldham will not work in Romford. There will be best practice in Oldham, which will transfer over and can be upscaled to Halifax, Lewes or Romford. That is also a job of the centre—to promote that best practice and what works, encouraging other authorities to do that—but the funding challenges require an integrated approach, and I saw at first hand how that could work in my own local authority.

For a very small period of time, now unpicked by the latest round of structural changes, Tameside council was also the clinical commissioning group for Tameside and Glossop. By bringing the local authority and the CCG together under a single leadership with a single budget, some really smart decisions were made on dealing with adult social care. I know what integration looks like, I know it works, and I know how we can get better use of the public pound, by stripping out some of the duplication.

I am very pleased by what the hon. Gentleman is saying, but have just a small point of clarification. There should be common cause over this issue, but does he agree that the important thing is that the funding follows the individual? It should not matter which part of the country someone lives in or if they are on a certain side of the boundary of a borough. My borough is within Greater London, and we get very poor funding because all the money goes into the centre for all sorts of local services, and Essex County Council is just up the road, so we always get caught. Can the hon. Gentleman assure me that in any policies he may bring forward, the money will go directly to the needs of the individual, rather than one person on one side of a boundary getting the funding, while a mile down the road they do not get the support they need?