Dementia Research in the UK

Bob Stewart Excerpts

Thursday 10th February 2022 Commons Chamber

[Bob Stewart (Beckenham) (Con)]

I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for a first-class introduction to the debate. Dementia is an awfully debilitating condition. We all have many constituents who have asked us to pay attention to it and to attend the debate. I have been asked to speak and consider it a duty to do so.

My mother died while suffering from dementia. It was horrid to see a dynamic, wonderful person reduced so greatly that she did not even recognise my sister, who had cared for her. I totally sympathise with the description given by my friend the hon. Member for Ochil and South Perthshire (John Nicolson) of what happened to his mother. My mother was lonely, she was lost, and it was terrible—a terrible end for her.

As we have heard, the UK has 850,000 dementia sufferers, and it gets so much worse once we are beyond 65. I reckon that roughly one in 70 of the population have dementia. One thing that really strikes me about dementia—it is a vivid image—is how often dementia sufferers are so frightened. I gather—I have not seen it—that they are particularly frightened when they walk into a room with a dark carpet or mat on the floor. They shrink back, because they think it is a hole that would devour them.

I pay tribute to the people who look after those suffering with dementia. That is not just formal carers; it is normally the family. Everyone who has experience of dementia sufferers knows that those carers do so much for those people whom they love, yet they do not get recognition for it. They are looking after someone whom they care about but get no response. It is really difficult. It asks one hell of a lot of people to keep doing it, but, my goodness, they do, often for no money whatsoever; it is simply because of love and what the person was before.

I am pleased to have been briefed by the Alzheimer’s Society, and I am now what it calls a dementia friend. May I urge all colleagues to take the Alzheimer’s Society’s “Dementia Friends” course? I did it in my office. It takes about half an hour. People come and explain about dementia. We may all think we know it, but let people come and talk about it. Then, the more of us who know what it is like and can talk about it, the more of us who can influence Government and the more we can help those poor devils who suffer from dementia and those people who, by extension, are affected so deeply by dementia because they have to look after dementia sufferers.

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[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

I congratulate the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) on securing today’s debate and on her continued work on this issue, which I know is appreciated by many throughout the House and beyond. It is a pleasure to follow the hon. Member for Bexhill and Battle (Huw Merriman); I enjoyed listening to the stories of his visits.

Dementia has a lasting impact on those who develop it and on their loved ones. While the patient begins to develop symptoms, maybe slowly at first, it may be frightening—memory loss, a struggle to communicate, mood swings, and a change in personality for reasons the person does not understand. Over the course of our lives we get to know ourselves very well, and losing that sense of self is incredibly sad. The impact on carers and family members must not be underestimated either. Depending on the level of severity, caring for someone with dementia can be a full-time 24/7 job, and that can be exhausting. A common feeling among carers is guilt—guilt that perhaps they cannot keep up; guilt that sometimes they resent their newly found role. It is human nature to be hard on ourselves.

About 90,000 people in Scotland are currently living with dementia, and that number is expected to increase to at least 120,000 over the next 20 years. The condition is prevalent, and numbers are rising. It is estimated that in the UK one in three people born this year will develop a form of dementia later in life. In South Lanarkshire, where my constituency sits, dementia is the leading cause of death for women, accounting for 16.2% of female deaths. That is a sobering statistic. Globally, there are now more people living with dementia than with cancer, which is why research on treatment, or a cure, is so important. There is still no effective treatment. We can see how investment in research has allowed scientists to make unprecedented breakthroughs in respect of cancer, for example: sustained funding for cancer research allowed scientists to understand it better, turning what was, at one point, seen as a death sentence into a chronic but manageable disease. However, the human brain is complex, and that plays a big part in why dementia remains so poorly understood. Research has historically suffered from under-investment, and sustained investment is vital if breakthroughs are to be made.

Let me draw another comparison with cancer research. There have been 74,000 cancer-related clinical trials since 2000, but fewer than 2,400 for Alzheimer’s. In the same timeframe, the Food and Drug Administration has approved 512 cancer drugs, but just six drugs for Alzheimer’s. The UK Government’s funding for cancer is almost three times higher than that for dementia. The pressure on the NHS cannot be ignored. More than one in four hospital beds are occupied by someone with dementia, and more than half of dementia patients will have at least one hospital admission each year.

[Bob Stewart]

It was the story from my friend, the hon. Member for Ochil and South Perthshire (John Nicolson), about his mother that twigged something in my memory. The real problem seems to be that the will to live disappears. People look normal, but they are just vacant. As an ex-soldier, having seen this with soldiers, I know that the will to live is crucial. When someone gives up the will to live, they are gone. We have to find a way of making sure that dementia sufferers keep the will to live because if that is vacant, it is gone. I think that is true but others might disagree.

[Margaret Ferrier]

I thank the right hon. and gallant Member for that intervention and the hon. Member for Ochil and South Perthshire (John Nicolson) for his story about his lovely mother—a really sparkling lady, who I remember seeing pictures of. It is very sad when people give up the will to live.

One in five hospital admissions are for potentially preventable reasons, such as a fall, infection or psychiatric difficulties. It is not all bleak though. There have been developments and we understand the disease better now than we did just a few years ago. New research from University College London and the University of Paris, published in The BMJ in December, found that those with two or more chronic health problems in middle age are more than twice as likely to develop dementia. That research was based on a long-term clinical trial showing how progress can be made if the resources are available.

I would like to mention the Glasgow Brain Injury Research Group based in the Queen Elizabeth University Hospital. The group looks at traumatic brain injuries, or TBIs, and the impact that they have on patients exposed to varying levels of severity of injury. It is pursuing an interesting workstream on the link between repetitive mild TBIs, incurred through sport such as football and rugby, and the increased risk of dementia. We all know of many famous footballers who have died from dementia, such as the great Billy McNeill. This is a fantastic piece of work and one of the many different research areas that could really deepen our understanding of how dementia occurs and develops and of subsequent treatment methods.

The medical community remains hugely optimistic. A survey of researchers at the UK Dementia Research Institute found that 90% of them felt that new treatments would be found within the next decade, and 72% held the opinion that the pace at which breakthroughs are being made is increasing. Vitally, though, 100% pressed the need for additional funding to allow breakthroughs to be made. They are the experts and we should listen.

Developments are already under way, but the key now is maintaining and accelerating the existing momentum. We have heard of the Join dementia research resource, which is piloting actively writing to all people with dementia after their diagnosis to invite them to participate in research. That would hugely benefit dementia research. In March 2021, Public Health Scotland revealed that less than half the people estimated to have had a new dementia diagnosis in 2018-19 were referred to vital post-diagnostic support. That outreach is essential. How will the Government support the JDR pilot and its roll-out across the four nations?

The lack of timely and accurate diagnosis is making it hard for current clinical trials to identify suitable candidates. The condition is severely underdiagnosed and the current backlog has only slowed things down even further. Transforming the current diagnostic process is pivotal. If diagnosis comes too late, we risk patients not being able to access treatments that might have helped to slow down its development.

The Government talk a lot about levelling up the UK, and I wonder whether that same attention could be given here. As part of the dementia strategy, the Government should invest in the development of multiple dementia clinical trial sites to form a network across the UK. Such a project would be in keeping with a true levelling-up agenda and make the UK an attractive centre for international life science investment. Better understanding of the disease leads to better support medically and emotionally. It will lessen the burdens on our frontline services. Early detection of the disease is crucial to allow patients to continue living independently and with dignity. That is one step that can be taken now. We need a stronger understanding among the general public about what to look out for and how to get help.

I wish to highlight the essential support provided by a number of charities for those with dementia and their support networks. They have also provided a wealth of knowledge to Members to support this debate, for which I am very grateful. Age Scotland, whose remit reaches much further, provides excellent support for older people in Scotland, as do Alzheimer’s Research UK, the Alzheimer’s Society, and Alzheimer Scotland, among many others. Charitable funding has become harder to come by over the past two years, and the work of those organisations in the face of that is invaluable and impressive. Their working commitment is commendable. The UK is a leader in biomedical research. That is something to be proud of, and something we must harness. I look forward to the Minister setting out today how plans for dementia research will be included in a national dementia strategy.

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[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in any debate secured by the hon. Member for Oldham East and Saddleworth (Debbie Abrahams). Indeed, I do not think she has secured any debate on dementia in either the Chamber or in Westminster Hall that I have not been at. That is first because I want to support her, but secondly because the subject matter is something that is real to me as a constituency MP, and to others who have told their stories in the Chamber. I find those stories incredibly moving because they illustrate, as personal stories always do, how complex this issue is. It is a pleasure to support the hon. Lady in this issue, which affects every corner of this great United Kingdom of Great Britain and Northern Ireland.

Strangford is a very beautiful location with wonderful facilities and lovely people. Given that, we have a high number of older retirees, who moved there to enjoy the safety of our constituency. The natural follow-on from that is that we have a large number of people who are susceptible to dementia. Over the years, when one is probably at around my age, one notices people who one remembers from childhood but who are now getting older and have developed dementia. I have quite a few friends in that position—I am not better than anybody else, but I can fairly quickly see where the issues are and one notices the slip away.

For instance, my mother had a lady living next door. One day she came in to see her and afterwards I said, “Mum, I think that lady is just starting to have a wee bit of dementia or Alzheimer’s.” She said, “Are you sure?” and I said, “I’m not smarter than anybody else, but I think there’s the start of something there”, and unfortunately there was. We know that drugs and medication can delay the process by five or six years, stopping the slide. As a busy constituency MP, I deliver on these issues all the time, whether it be attendance allowance forms, benefits issues or just helping people, as I do by the day, by the hour and by the minute. Recent figures and statistics show, and this is scary, that just under a fifth of all dementia diagnoses in Northern Ireland are of residents in the local trust in my Strangford constituency. As a busy MP with very busy staff who deal with these issues every day, every week and every month, I see these things.

Of course, we understand that dementia is not limited to individuals. We must remember that dementia affects entire families. The right hon. and gallant Member for Beckenham (Bob Stewart) mentioned his mum, and the hon. Member for Ochil and South Perthshire (John Nicolson) told a very personal story about his mum, too. We can all relate, as it affects entire families—children, grandchildren, sisters and brothers.

Dementia takes people away from us while they are still alive. Those words sum up the debate very well, as that is the impact of dementia and Alzheimer’s. People see the shell of their precious sister, who has forgotten her husband and who screams when he comes into the room, “Who is this man?” She does not recognise him, but they have been married for 35 or 40 years. She cannot express her toileting needs or say that she is simply lost, which is what these people are. That is the reality.

This is replicated widely throughout the UK. Life is simply harder, as taking the standard medication is a trial. It is little wonder that, currently, one in four NHS hospital beds is occupied by someone living with dementia.

[Bob Stewart]

It is nice to see you in the Chair, Mr Deputy Speaker.

A friend of mine tells me that his wife suffers from dementia. She sometimes turns round to him and says, “Why are you sitting in my husband’s chair? Get out.” Isn’t that tragic?

[Jim Shannon]

That is exactly the kind of story we are all trying to illustrate with our words, or broken words, this afternoon. It is exactly what my constituents say to me.

The economic cost to the UK of caring for people with dementia is estimated to grow from £24 billion in 2014 to £47 billion by 2050. If that is the case, we really need research and development. Everyone who has spoken in this debate has said that we need it now.

I do not want to catch the Minister out, as that is not my nature, but the commitment in the 2019 Conservative manifesto has not yet been delivered. I am not getting at him, as he knows, but we need to have that commitment delivered. Dementia is increasing, and so must our response. We need funding for cures and coping mechanisms, which goes back to the commitment on research and development.

Asking people to play a game of sudoku on their phone each day is not a preventive strategy. We must put our money where our mouth is and find a way to answer the question of dementia. Way before covid arrived, I was invited to attend a dementia and Alzheimer’s help group at the Church of Ireland church in Newtownards. I learned a lot that day from speaking to family members, who told me that playing music sometimes seems to bring those with dementia or Alzheimer’s back to where they were. The hon. Member for Ochil and South Perthshire spoke about dancing, and I saw a lady dance—that is what she remembered. Music seems to bring people back, so it can be therapeutic.



There is one event I attended that I do not think I will ever forget. I know the people who run an Alzheimer’s and dementia home. They are very good to all their residents, who have different levels of dementia and Alzheimer’s and are at different stages. The trust were doing an event and they invited me as the MP and some of the local councillors down. They said, “We are going to try to illustrate to you what it’s like to have dementia or Alzheimer’s.”

Here is what they did: first, we put earphones on, which kept the noise around us but made a constant noise in our ears that was quite deafening and scary. They locked us in a room, in darkness, and they put a mask over our eyes so we could see nothing but darkness, which the right hon. Member for Beckenham (Bob Stewart) referred to. They put a sole in our shoe that had points in, so that every time we took a step it was like stepping on stones. We did that for 10 minutes, and it was probably the closest I ever came to being mad. That is how horrendously scary that experience was, and it left a lasting mark on me. That illustrates, from a personal point of view, what it means to have dementia or Alzheimer’s.

In the 2019 Conservative manifesto, the Government committed to addressing dementia, pledging to double funding for dementia research to £160 million a year. However, I say gently to the Minister that two years in we have seen no plan to deliver that funding increase. I understand that there are reasons because of covid-19, but there are also reasons to deliver what was committed, which we all support, and we would all support the Government to make that happen.

The latest figures show a decrease in Government spending on dementia research. For the year 2020, funding for dementia research was £75.7 million, down £7 million from £82.5 in 2019 and £22.4 million down from its peak of £98.1 million in 2016. That tells me that we really need to do something. I know this Minister is a Minister of action, and I know that, when it comes to telling us what will happen, he will be able to tell us that that funding commitment will be addressed, so I look forward to his response.

I support the calls of Alzheimer’s Research UK. The rapid development of the covid-19 vaccines, a success story that we all welcome, tells us that, if we focus on something, we can do it. If we can do it, let us do it—and if we need the money that was committed to make that happen, let us do that as well. That is what we want to make happen. Alzheimer’s Research UK says:

“The rapid development of COVID-19 vaccines has demonstrated the role the UK Government can play in bringing together different stakeholders to focus on a common challenge, and the impact this collective energy, funding and determination can have. In parallel to increased research funding, we need the approach taken to COVID vaccines to be applied to dementia—coordinated, ambitious action from government to bring together industry, health services and researchers”—

all those who want to help, including our Minister and the Government. It continues:

“This bold approach must be reflected in the forthcoming Department of Health and Social Care’s Dementia Strategy and will ultimately ensure UK patients have priority access to innovative new dementia treatments.”

Dementia is unfortunately a growing problem, and we must focus on it, not simply because it will be beneficial to our financials in the long term—it will—but because families are being torn apart by the pain of losing loved ones while they care for their shell. That is what is happening. It is like losing a piece of them week by week, and it hurts. It hurts all those families. It hurt the right hon. Member for Beckenham, it hurt the hon. Member for Ochil and South Perthshire and it hurt the hon. Member for Oldham East and Saddleworth, who lost her mum.

When I think of all those things, I believe we can do more to stop dementia, and funding for research is the way we must go. Again, I look to the Minister—to my Minister and to my Government—to make that manifesto commitment a reality, and sooner rather than later.