Inequalities in Dementia Services

Debate between Debbie Abrahams and Andrew Rosindell

Thursday 16th May 2024 Westminster Hall

[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.