Dementia Research in the UK

Lyn Brown Excerpts

Thursday 10th February 2022 Commons Chamber

[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.

[Ms Lyn Brown (West Ham) (Lab)]

One of my constituents, in asking me to attend today’s debate and talk about dementia, mentioned that they did not feel that dementia is a sexy enough subject to get the funding for research. It is almost as if it is expected that most of us, at the end of our lives, will not be as sharp tacks in the box as we once were, and may therefore find it hard to attract the funding. Does the hon. Lady agree with my constituent?

[Margaret Ferrier]

I do not agree that people with dementia have nothing else to give to society. As the hon. Member for Bexhill and Battle mentioned, they have some great memory recall, and it can be good to work along with young people from schools. It is essential that we have funding to continue that work and research into dementia because as I said earlier, more and more of us may succumb to that terrible illness. I look forward to the Minister setting out how plans for dementia research will be included in a national dementia strategy, and how the Government are supporting the development of essential new technologies in that space.

--- Later in debate ---

[Steven Bonnar (Coatbridge, Chryston and Bellshill) (SNP)]

I too commend the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this debate and for her excellent contributions to it.

We have heard that dementia affects around 850,000 people in the United Kingdom—one in every 14 people over the age of 65, and one in every six over the age of 80. Dementia is one of the leading causes of death across the United Kingdom and currently, as we know, there is no cure. The most well-known impact of dementia on an individual is progressive memory loss, which affects both mental and physical abilities and makes it difficult to execute even the most basic of daily activities effectively and efficiently. When someone is diagnosed with dementia, it can be overwhelming, as they face several difficult challenges on the long road ahead.

We all know and have heard just how much dementia has affected many of our constituents and their loved ones during this awful pandemic. The House heard so lovingly from my hon. Friend the Member for Ochil and South Perthshire (John Nicolson) about his plight and the plight of his wonderful mother Marion. I have spoken to those who care for family members across my constituency of Coatbridge, Chryston and Bellshill, and they have expressed how much more difficult covid and the pandemic have made the experience, as the pandemic has presented its own new and unique challenges.

Not only does dementia cause harm and heartbreak to millions of families throughout the countries of the UK but it is completely unsustainable for our health and social care systems. The economic cost to the UK of caring for people with dementia is estimated to grow from the £24 billion it was in 2014 to £47 billion by 2050. Age is, of course, by far the biggest risk factor for a dementia diagnosis, and as our population ages the number of people diagnosed with dementia will increase. The number of people living with dementia in the UK is expected to exceed 1 million by 2025.

As we have heard, 90,000 people are currently living with dementia in homes all across Scotland. That is why the SNP Scottish Government published a dementia and covid-19 action plan in December 2020, to build on, continue and expand the national action taken since March 2020 to support people with dementia and their carers. The Scottish Government are working with partners such as Age Scotland to help dementia patients to get better support and have a bigger say in what works for them and in their individual care package.

The Scottish Government have pledged a further £1 million to help to tackle dementia in Scotland. Brian Sloan, the chief exec of Age Scotland, said:

“This funding will help address some of these challenges by shaping communities that work for those who have lived experience of dementia.”

That is a clear indication of the effectiveness of Scotland’s response. The Scottish Government have seen how the coronavirus pandemic has had a disproportionate impact on people with dementia. Through partnerships, they will help to grow the community support that has been considered critical to people and their families. I am of the belief that Scotland is also seeing positive results through our policy of integrated health and social care among health boards and local authorities. The Westminster Government should follow that lead.

Of course, Scotland is currently the only country in the United Kingdom with free personal care, which is extremely important support for people under the financial strains that dementia and living with dementia can place on families. People who are not in Scotland may wonder what that looks like: a dementia sufferer can receive up to four visits per day in their own home, where care is administered and the carer spends some time with them because, as the right hon. and gallant Member for Beckenham (Bob Stewart) pointed out, loneliness can be one of the biggest indicators that mean people simply give up. We must do everything we can to make sure that people live a fulfilling and wonderful life.

[Ms Lyn Brown]

Hear, hear!

[Steven Bonnar]

Thank you.

In 2017, the UK Government declared that the UK would be the most dementia- friendly country in the world by 2020. [Interruption.] The Minister nods his head, but unfortunately we know that that is not true: just look at the hundreds of dementia care homes in England that were discovered to be providing substandard care to their dementia patients.

A Care Quality Commission report found that one in every five homes specialising in dementia were rated as “inadequate” or “requiring improvement”. Some posed such a serious risk to people with dementia—because of filthy living conditions, poor infection control and poorly trained staff—that inspectors had to order them to be put into special measures. In total, 1,636 care homes are failing patients, according to findings described as “appalling” by charities and campaigners. They stated that immediate action was required to address the “unacceptable” state of dementia care across the country.

If we are to position the UK as the world leader in dementia—something we all want to see—we should not start by cutting the much-needed funding that was promised by the Government for dementia research. As we have heard, the 2019 Conservative party manifesto committed to address dementia by pledging to double funding for dementia research to more than £160 million per year. However, two years later and another broken promise later, we find ourselves in the same situation, with no plans from the Government to deliver on their manifesto pledge. The funding for dementia research for 2020 was £75.7 million—a decrease from £82.5 million in 2019 and from the high of £98.1 million in 2016.

What else do we need to say to persuade the Government to recognise the importance of funding dementia research in trials? Currently we have over 150 clinical trials worldwide examining potential dementia treatments. It is more pressing than ever that we can transform dementia diagnosis. We need early diagnosis of the diseases that cause dementia and we need to diagnose them more accurately; otherwise it will be too late for patients to benefit from potential new treatments. The Government should invest now in infrastructure, resources and the clinical workforce to build diagnostic capacity and support innovative ways of organising NHS services such as brain health clinics to offer new diagnostic pathways. I look forward to the Minister outlining how the Government intend to achieve that.

The Scottish Government have proven our commitment to dementia research with a one-off £75 million increase in funding for our universities to ensure that they can protect world-leading research programmes against the financial impacts of covid-19. That is exactly how we protect those we care about and those who care for us. The current prevalence rate of dementia among older people in the UK is about 7.1%, and of the four countries Scotland has the lowest prevalence rate, with England having the highest overall prevalence rate. With the growing trend and threat of dementia to our citizens, it is now time for this Government to act and to outline a proper plan to help combat the threat of dementia across these nations, with the goal of preventing people from developing the onset of dementia.

The UK Government can follow in the footsteps of Scotland and become the world leader in dementia research they told us they would be, but to do so they must deliver on their manifesto commitments to double the funding for dementia research, speed up progress in clinical trials, and ultimately—maybe only by the grace of God—help us to find the cure. We cannot allow any more time or opportunities to pass by as we seek to support those living with and at risk of dementia.