Inequalities in Dementia Services

Debate between Debbie Abrahams and Andrew Gwynne

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%?

Civil Proceedings

Debate between Debbie Abrahams and Andrew Gwynne

Tuesday 29th March 2022 Commons Chamber

[Andrew Gwynne]

I thank my hon. Friend for his kind remarks. I have met numerous groups representing the clinically vulnerable, the clinically extremely vulnerable and the immunosuppressed communities, and the level of anxiety and worry in those communities is clear. While we have all, to some extent, been able to get back to as near a normal life as possible, those communities still feel isolated, under pressure and incredibly concerned about what mixing and social interaction would mean for them, were they to get coronavirus.

[Debbie Abrahams]

On top of those groups, which my hon. Friend is right to mention, there are also family carers, who are concerned that they may be prevented from having access to their family members in care homes without adequate testing, which they will be forced to pay for if it is not clear that they are included in the free testing.

[Andrew Gwynne]

My hon. Friend is absolutely right. Many of the people who are classed as clinically vulnerable, clinically extremely vulnerable or immunosuppressed are looked after by members of the family or friends who will come into the house to look after them, rather than by paid carers. Were free lateral flow testing to be extended at least to the CV, CEV and IS communities—not for those people themselves, but for the people coming in to communicate and interact with them—it would at least give them some degree of confidence that coronavirus is not being brought through the front door.

--- Later in debate ---

[Andrew Gwynne]

It does stick in the throat a little hearing “personal responsibility” regurgitated time and again when we now know what happened in Downing Street, that the rules were broken and that the laws made in this House were broken. [Interruption.] The Minister says, “We don’t know that”, but we do, because 20 people have just received fines, and that means the law was broken.

We must not simply turn the clock back and pretend that covid never happened. Over the past two years we have seen the impact of painfully inadequate sick pay, and we have seen the benefits of access to free testing. We must learn from both those things. We have also lost more than 160,000 citizens in the course of this pandemic. I fear that, although the numbers are much smaller than they were, that toll will rise day on day, week on week, and year on year. We have real lessons to learn.

[Debbie Abrahams]

We would also make sure that we fulfilled our commitment to the international community on providing the vaccinations that it needs. There are still more than 2 billion people who are unvaccinated, and that will accelerate the risk of new variants that may be even more lethal.

[Andrew Gwynne]

My hon. Friend is absolutely right.

Although we will continue to hold this Government to account, we will not oppose these measures today. There are real questions about covid that have to be asked by us and answered by Ministers, because too many are still unanswered. We owe that to the families of those who did not survive the pandemic, and we owe it to the whole country that stood by the rules throughout thick and thin to get us to where we are today, even when some in Government were not doing that. It is time for the Government to get serious. It is time for the Government to treat the British public with the respect that they deserve. It is time for a proper plan to live with covid.

Dementia Research in the UK

Debate between Debbie Abrahams and Andrew Gwynne

Thursday 10th February 2022 Commons Chamber

[Andrew Gwynne]

My hon. Friend makes a crucial point. There has been a perfect storm. As we have heard, there is a growing list of people waiting to be diagnosed properly with dementia as a consequence of the covid pandemic, and, as she rightly says, the very research groups doing in-depth analysis and research into this disease are largely reliant on charitable sources of funding, which have almost completely dried up over the course of the pandemic.

[Debbie Abrahams]

I was going to mention this when I wind up, but I could not agree more. Funds to medical research charities, such as Alzheimer’s Research UK and the Alzheimer’s Society, have more or less halved—an awful impact.

[Andrew Gwynne]

Absolutely. This is a crucial point and it is why the Government really must come good on their promises.

I also hope the Minister will update the House and give us a timetable for the publication of the dementia strategy. Patients living with dementia, and their loved ones, cannot wait for the Government to get their act together. We need a plan and we need it to go much faster to develop treatments to change lives. The Government must deliver now on their 2019 dementia moonshot manifesto promise to double Government funding into dementia research. No more excuses: that promise needs to be kept. As we have heard, funding is needed now more than ever in a research landscape that has been decimated by covid. Not only have charitable donations dried up, but a survey from Alzheimer’s Research UK found that more than a third of dementia researchers were considering leaving, or had left, academic research due to uncertainty around funding opportunities.

I want to raise the point made by my hon. Friend the Member for West Ham (Ms Brown) in an intervention on the hon. Member for Rutherglen and Hamilton West. She rightly made the point that too often these research projects are not necessarily seen as sexy. We have to make sure that that is not the case, because as I have said, they are so crucial. Labour is committed to doubling dementia research spending to over £160 million a year and to playing our part in finding a cure for this cruellest of diseases. That is a part of our commitment to not only protect but enhance the UK science base and achieve 3% of GDP spending on science and research across the economy.

Patients and their families must be a priority. That starts with dementia research, improved early diagnosis and world class clinical trials. Our goal must be to prevent, treat and ultimately cure this complex and often heartbreaking condition. That is why Labour’s suggestion of a 10-year plan of investment and reform for older and disabled people, including those with dementia, is so important. It would ensure that more people could access care and live in their homes for longer, while being supported by carers paid a proper living wage of £10 an hour.

British people deserve better. We need to meet the challenges of this century of ageing. We need to learn from the pandemic, because there are so many lessons that we can put into ordinary life. We need to treat those who are diagnosed with dementia with the respect that they deserve. This is not a party political point; there is unanimity across this House of Commons. We must redouble our efforts on research for dementia to improve care and support and, ultimately, to find a cure for this dreadful disease.