Lewy Body Dementia

Tuesday 26th April 2016 Westminster Hall

11:04

[Sir Alan Meale (in the Chair)]

Could hon. Members leave quietly? We are about to start the next debate. I would be grateful if you could remove yourselves swiftly and quietly.

[Conor McGinn (St Helens North) (Lab)]

I beg to move,

That this House has considered awareness and recognition of dementia with Lewy bodies.

It is a pleasure to have secured this debate, under your chairmanship, Sir Alan, on dementia with Lewy bodies, or DLB as it is known, and as I will refer to it henceforth. May I start by congratulating the Minister on his very significant achievement on Sunday in completing the London marathon? Well done to him for the moneys that he raised for his charities. In the same vein, it is with some pride that I declare that I was recently appointed an ambassador for the Lewy Body Society, a charity whose mission is to raise awareness of DLB among the general public and educate those in the medical profession and decision-making positions about all aspects of the disease, as well as to support and fund research into it. For 10 years, the LBS has raised awareness, provided support and information, and funded research into DLB, which is the second most frequent cause of age-related neurodegenerative dementia. I am delighted that some of those involved in the campaign are in Parliament today.

It might be helpful if I say a little about DLB. Lewy bodies are abnormal aggregates of protein that develop inside nerve cells in Parkinson’s disease, DLB and some other disorders. They were first discovered by Dr Frederick Lewy as far back as 1912, but incredibly, despite that, DLB was virtually unknown until the late 1980s, when advances in techniques made it possible to identify Lewy bodies under a microscope.

Every case of DLB is as individual as the person living with it. Different people show different combinations of symptoms. At present, a diagnosis of DLB can be confirmed only by autopsy, but a careful clinical evaluation of the patient and their symptoms can in many cases form the basis for making a reasonably confident lifetime diagnosis. There are also technological advances in imaging and research into biomarkers that it is hoped will result in earlier and more accurate diagnoses.

The central symptom of DLB is dementia, which is defined as progressive mental decline that is serious enough to interfere with normal daily activities such as eating, washing, dressing, cooking, shopping and managing finances. Significant memory loss may not develop until later. There may also be problems with executive function in respect of attention, problem solving and spatial awareness. This can easily be mistaken for Alzheimer’s disease.

Additional symptoms that may lead to a diagnosis of probable DLB are, first, disturbances in REM—rapid eye movement—sleep. The impact of that on a family carer is terrible. The carer is unable to sleep themselves and therefore becomes unable to support the person with DLB. REM sleep is the deep sleep in which people dream. A certain amount of good, REM sleep is necessary for people to function efficiently. DLB sufferers may talk in their sleep or act out their dreams. Sometimes that is so marked that the sufferer falls off the bed.

Secondly, there is severe sensitivity to neuroleptic drugs. Sometimes people with DLB are prescribed neuroleptic—antipsychotic—drugs to help with their symptoms. That should be done only by someone experienced in the illness, as many of those drugs can be extremely harmful or even fatal to people with DLB. That problem has been recorded.

Despite the importance of correct diagnosis and treatment of DLB, the disease is often not recognised, identified or diagnosed.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing a very important issue to the House. The week before last, I had a debate in this Chamber on dementia and Alzheimer’s disease, which a number of hon. Members attended. Dementia has the potential to be the defining condition of this age. Does he think that there should be more research and more partnerships between parts of Government, between universities and between businesses to find a cure for this disease? By finding a cure, we will help to ensure that diagnosis happens earlier, as it should.

[Conor McGinn]

The hon. Gentleman, whom I would feel comfortable referring to as my hon. Friend, makes the point with his usual eloquence, and I could not agree more. I will say a little more later about some of the research being done.

Dementia is not just about memory. The supportive symptoms of DLB are fainting, falls, problems with swallowing and continence, delusions, depression and hallucinations, including hearing, smelling or feeling things. Some people have benign or pleasant hallucinations of, for example, children or animals. A sense of the presence of someone who is not there is common in many patients. Other sufferers see frightening and disturbing things and may react to them by displaying challenging behaviours that prove very difficult for the family to manage.

More than 700,000 people in the UK have dementia. That number is projected to rise to 1 million by 2021 unless significant advances are made; indeed, the figure is expected to double in the next 20 years. As the hon. Gentleman said, the issue now touches the lives of virtually every family in the United Kingdom. It is a big issue for the NHS, but also for all local authorities and, indeed, all public services. In the UK, approximately 100,000 people are thought to suffer from DLB. At least 5% of people aged 85 or older are thought to suffer from this little known, but not uncommon, and devastating disease.

It is important to note that diagnosis rates of dementia across the country are low and incredibly varied. In the UK, less than half of people living with dementia are diagnosed, let alone differentiations being made between the types of dementia.

[Dr James Davies (Vale of Clwyd) (Con)]

I thank the hon. Gentleman for bringing this important debate to the House today. He says that diagnosis rates across the country are patchy, but will he acknowledge that there has been good progress in general with dementia diagnosis, and that there is increasing awareness through dementia-friendly communities and so on? There is, however, a poor understanding of this type of dementia, and it is vital that we move ahead in informing the public and clinicians about not only dementia, but the various types of dementia.

[Conor McGinn]

I thank the hon. Gentleman for his intervention. I agree with him and will come later to some of the issues that he raises. I come to this debate in a spirit of co-operation, recognising the good work that has been done, and looking at how we can work effectively together to continue and develop it.

It surprised me that officially there are no data on the diagnosis of DLB. There is, however, an ongoing National Institute for Health Research-funded study examining diagnosis rates of DLB in the NHS. Current findings indicate that the rates are more than 50% lower than expected, with considerable variation, again, between services. I am sure that the Minister will agree that early and accurate diagnosis is of great importance and can allow more people to have as good a quality of life as possible for as long as possible.

As always, it is the human experience of the disease that expresses fully its awfulness and tragedy. My constituent Jacqui Cannon, who is chief executive of the Lewy Body Society, told me:

“In 2007 my darling dad was diagnosed with dementia with Lewy bodies. My father had been behaving increasingly strangely for a few months and I took him to the doctors. He was fortunate that he had a GP who was responsible for GP training in Greater Manchester and who made an immediate diagnosis. He was then referred to an old age consultant, he had an appointment almost immediately due to the ability to be able to pay as a private patient. The diagnosis was confirmed. The GP used him as a case study at a GP conference to put emphasis on the importance on patient centered care. My father had other underlying health issues and the consultant liaised very closely with his other doctors. This does not happen for everyone.

Knowing what I now know; my father had all the hallmark symptoms of DLB. He had hallucinations, he was totally muddled and could not distinguish between what was on the television and what was actually going on around...We struggled to care for my father at home. I was taking over from my mother when I finished working full time…for a major…company. He was very well cared for in a local EMI unit The caring doesn’t stop at this point and I visited every day after work and missed one day in 2 years, often only arriving home at 9:00pm each day. I did a google search and The Lewy Body Society appeared, I have been involved since that point.”

One of the charity’s founders, Ashley Bayston, said:

“In 2005 my precious mother was diagnosed with dementia with Lewy bodies. She had been behaving increasingly strangely for 5 years during which my father took her to dozens of doctors before, at my father’s suggestion, neurologist 26 made a diagnosis of DLB. I have heard this story so many times in the past decade. The carer, frustrated by the doctors’ prevarication and inability to admit they don’t know, does extensive search and ends up suggesting the diagnosis.”

Ashley also uses that phrase:

“Knowing what I now know, my mother had all the hallmark symptoms of DLB. She had terrifying hallucinations, she was totally muddled”,

and she says that her mother could not tell the difference between reality and illusion. She continues:

“One time she told me that she had seen me on the telly the night before and liked my outfit. She often thought that there was a cat in the house. Years before she had lost her sense of smell and at the start of her illness suffered from severe…hypotension and constipation. By the time my mother was diagnosed she was in the final stages of DLB. Totally bedridden and helpless and in and out of consciousness. Fortunately my father was able to keep her at home tended round the clock by angel nurses who treated her with the love and respect they would give their own mothers. This is very unscientific but I do believe that it was love that kept my mother alive after the doctors wrote her off. My parents had been married for 67 years when Mum died.”

There are, however, some grounds for optimism. It should be a source of pride that the United Kingdom has played a significant role in the recognition and management of the disorder. Newcastle University is a centre of excellence in the field and the UK is a major force in understanding the disorder. Indeed, Professor Ian McKeith from Newcastle, who is internationally recognised as the world’s leading expert in DLB, is the founding president of the Lewy Body Society. That is important because the society’s objective is to bring support and expertise over and above what is offered elsewhere. Additionally, the existence of an organisation dedicated solely to DLB validates those affected by the disease and gives them a sense of community. It is difficult for people to understand this complex and frightening disease unless they have experienced its effects.

Thirty years ago, the concept of DLB simply did not exist. People with the disorder were misdiagnosed and mismanaged to the severe detriment of all concerned. However, the situation has improved significantly. Many patients are now recognised as having the condition early and accurately, and receive appropriate treatment and care, but as always, and particularly in this case, much more needs to be done.

In the previous Parliament, the Prime Minister released “Prime Minister’s challenge on dementia 2020”, a five-year plan to improve dementia care and the understanding of dementia in England. The document set out the welcome ambition for England to be

“the best country in the world for dementia care and support and for people with dementia, their carers and families to live; and…the best place in the world to undertake research into dementia and other neurodegenerative diseases.”

The progress made is welcome; the £150 million Dementia Research Institute is set to be up and running by 2020. It is also welcome that more NHS and care staff have had specialist training in the development of dementia, but we are still a long way from getting to grips with the serious issue of DLB, which has often been neglected.

The National Institute for Health Research has supported some DLB research, including the DIAMOND-Lewy study on diagnostic rates and management, run jointly by the University of Cambridge and Newcastle University. However, despite the increase in funding and commitments from the Government, funding for research into DLB has been limited, and although the National Institute for Health and Care Excellence issues guidance and guidelines about the management of dementia, and the Royal College of Nursing has done much to raise practitioner awareness, there are few specific provisions for DLB. The lack of funding available and the lack of guidance around DLB remains a concern.

The fact that DLB is not mentioned once in the entire 2020 dementia strategy means that there is a lack of funding available for the disease. The Lewy Body Society, for example, currently receives no funding from central Government. As a first step, will the Minister consider updating “Prime Minister’s challenge on dementia 2020” so that it specifically mentions DLB? Will he also incorporate plans to fund and help sufferers of DLB in the overall strategy? That would mean that the Department of Health could establish training programmes about DLB for GPs and other healthcare professionals. The NHS could then promote the message that, like cancer, dementia is a spectrum of diseases; that would make it easier to diagnose. It would also mean that research could be placed on a sustainable national footing and draw on existing expertise and experience. Recognition of DLB in the strategy will help awareness and lead to better treatment for those who suffer from it, because the more people who know, the fewer people who suffer.

The announcement that I was to become an ambassador for the Lewy Body Society received some media attention, and I received a phone call from my cousin, Patrick McGinn, whose father, my great-uncle Basil, had died some months previously. Like most of our extended family, I thought that Basil had Alzheimer’s or dementia, or was going senile or whatever particular euphemism we had occasion to use when we spoke about him. In fact, Basil had dementia with Lewy bodies. My own family has been touched by the awfulness and tragedy of the disease, and I did not know it. How many others are in a similar position, either suffering from DLB or caring for someone with it? For them and for my uncle Basil, I ask the Government for recognition to aid increased awareness of dementia with Lewy bodies, so that we can begin to help the many people affected by it.

11:04

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Sir Alan. I congratulate the hon. Member for St Helens North (Conor McGinn) on securing the debate and raising the important issue of awareness and recognition of dementia with Lewy bodies. I thank him for his kind personal remarks about my weekend activities, when I ran the London marathon. He is probably unaware that the Chair and I also have a sporting connection. Many years ago, we took part in a charity penalty shoot-out between English and Scottish MPs at Ibrox stadium in front of 50,000 people. That is not the normal size of crowd that the Chair or I play football before, but we enjoyed the occasion immensely. A sporting connection runs through us all.

I congratulate the hon. Member for St Helens North on his recent appointment as ambassador for the Lewy Body Society, and on the way in which he has raised the debate and brought the issue to the Chamber. As always, I thank colleagues in the House who show an interest. I thank the hon. Members for Strangford (Jim Shannon) and for Foyle (Mark Durkan) as well as my hon. Friend the Member for Vale of Clwyd (Dr Davies) for their attendance.

I agree with the hon. Member for St Helens North about Lewy body dementia touching many families. My wife’s uncle has recently been diagnosed, and I would like to thank her and all the other members of the family who are caring for her uncle as well as the staff at the care home and social services, who have also been involved. That brings home that dementia and its variants is something that many families can expect to experience. The debate is therefore timely and raises issues that are important to all of us.

The hon. Gentleman set out well some of the symptoms of DLB and issues relating to diagnosis. I cannot better that; I will not describe the symptoms because he did that extremely well. Diagnosis can be difficult. A GP can do some simple checks to see whether there is a chance that someone could have dementia and then refer them to a memory clinic or other specialist clinic if necessary. At the clinic, the person will be asked about symptoms and have a physical check-up and memory test, and they may also have blood tests and brain scans. The results of those checks and tests will give the doctor a good idea as to whether the symptoms are caused by dementia with Lewy bodies, another type of dementia or something else entirely. It is complex and, as the hon. Gentleman said, it is reckoned that perhaps 4% of all recorded dementia may be accounted for as DLB, but it may in fact account for 10% of all cases because it tends to be mistakenly diagnosed as another condition.

That brings up the question of research, which I will turn to before more general remarks about our approach to dementia generally because the hon. Gentleman raised that as a matter of some importance. The 2020 challenge sets out the aspiration to see research funding in dementia double by 2025 and relates to funding from all sources, including industry and charity. Through initiatives including Dementias Platform UK, the Dementia Research Institute, Join Dementia Research, the international drug discovery fund and the accelerated access review, we are creating a highly attractive environment for industry investment, including new targets for drug development. We also anticipate that greater public awareness achieved through the 2020 challenge and charity campaigns will lead to increased philanthropic donation to research charities.

On how particular funding is determined and which research projects are selected, funding panels made up of academic researchers, subject experts and patient and public advisers advise on decisions as to which projects should be funded within NIHR funding programmes, within the remit of each programme, determined by quality. On DLB specifically, as the hon. Gentleman said, the National Institute for Health Research funds the NIHR Newcastle biomedical research unit in Lewy body dementia, which is part of the NIHR dementia translational research collaboration, TRCD. However, other biomedical research units and centres that make up TRCD also do research in the area, including the NIHR Maudsley biomedical research unit. That accelerates the translation of dementia research from basic science to early-phase clinical trials, focusing on the three common late-onset dementias—Alzheimer’s, vascular and Lewy body dementia—and on fronto-temporal dementia with motor neurone disease.

Other major NIHR investments include improving the diagnosis and management of neurodegenerative dementia of Lewy body type in the NHS DIAMOND-Lewy study, which the hon. Gentleman mentioned. The chief investigator, to whom we pay tribute, is Professor John O’Brien of the University of Newcastle. Funding for that major programme of work is just over £1.9 million, which lasts from January 2014 to December 2018, and it is expected to result in an increase in the number of dementia with Lewy bodies cases diagnosed and to improve their care considerably.

We are very keen to see NIHR research programmes and to fund high quality proposals in dementia where those are within remit. In terms of future spending, there will be announcements on the Dementia Research Institute in due course about competition for membership. The content of the scientific programme will depend partly on the composition and directorship of the DRI, which is to be determined by competition, but I will ensure that the hon. Gentleman’s specific pleas in relation to DLB are passed through into the process and go to the Minister who is primarily responsible.

Let me say a little about further recognition of dementia into which this fits, because that is important. The hon. Gentleman was gracious enough to recognise that this issue continues to be of the highest priority for the Government. It is not a party matter in any way, as he made clear. In 2015, the Prime Minister set out his vision for dementia over the next five years, with his challenge on dementia 2020. The implementation plan, which was published last month, sets out the actions that partners—including those across health and care—will take to ensure that those commitments are delivered.

An accurate diagnosis of dementia is key to helping people live well with the condition. As my hon. Friend the Member for Vale of Clwyd said, more people now receive a diagnosis of dementia than ever before and it is reassuring to know that in the constituency of the hon. Member for St Helens North, 87.9% of people with dementia have received a diagnosis, which is significantly above the national average. I commend and praise the relentless efforts of those providing care and support to people with dementia. Again, he set out a moving case in relation to that.

[Mark Durkan (Foyle) (SDLP)]

In the context of the Prime Minister’s commitment in challenge on dementia 2020, which is very welcome, he has committed to roll out a national standard for tailored packages of post-diagnosis support. Will the Minister commit to ensuring that, when that standard emerges, it will be articulate enough to address DLB specifically?

[Alistair Burt]

It would be best for me to take specific requests on DLB back to the Department. I will write to hon. Members who have taken part in the debate with a response to that in due course. I hear and understand the hon. Gentleman’s point, but let me reflect and come back.

I return to those who are looking after people. The families and carers and the hundreds and thousands of health and social care staff who work tirelessly to deliver high quality, compassionate, personalised care always require and deserve a mention in any discussion of dementia and those involved.

The work we have done to improve diagnosis rates has meant that more people than ever can access the advice, care and support they need to help them, their carers and families live well with the condition. We now need to focus our efforts on reducing local variation in diagnosis rates and the care and support that people require. The diagnosis is only the start. We also need to ensure that every person diagnosed with dementia, and their carers, receive meaningful care following their diagnosis. To be clear, the needs of the person with dementia, their family and carers, should be at the heart of everything we do. We therefore want to see more consistent provision of innovative and high-quality dementia care delivered in a way that is personalised and appropriate to the specific needs of the individual. I have been fortunate enough to see at first hand some of the high- quality dementia care provided across the country and have been impressed with the culturally sensitive care and support, catering for a diverse range of dementia needs.

We also want people across England to have a greater understanding of dementia and what they can do to make a real difference to people living with the condition. I am pleased to say that there are now more than 1.5 million dementia friends in England and the Alzheimer’s Society is working to deliver an additional 3 million by 2020. I am grateful to the representative who talked to me and gave me some basic advice to help me become a dementia friend. In St Helens North there are reckoned to be over 6,500 dementia friends. Furthermore, local work such as that undertaken by the Dementia Action Alliance, the Life Story Network and National Museums Liverpool in neighbouring cities is helping support people, their families and their carers live well with dementia in their local communities.

I thank the hon. Gentleman for raising the nature of the debate and for being so specific, mentioning the work of the Lewy Body Society. I note that when he was appointed as an ambassador to it, he was quoted as wanting

“a commitment from the Department of Health to ensure that recognition for DLB is an integral part of strategies to tackle dementia.”

I assure him that we want everyone diagnosed with dementia to receive meaningful care following their diagnosis, and that very much includes those with dementia with Lewy bodies.

The fact that the hon. Gentleman has taken the trouble to raise the issue for debate, that he did so in the way in which he did and that he paid tribute to those who work in this area has done an immense amount just in this debate to raise the profile of Lewy body dementia and to secure commitment and recognition from the Department.

As a result of the debate, I will write to the hon. Gentleman with some answers to the specific questions he asked. I thank him for the way in which he did that and I hope that, through what we have said this morning, our commitment to dementia—to those suffering from it, to those who care for them and to all those involved in its research and treatment—has been made clear. This is a Parliament-wide commitment, which we all share. I am pleased to have had the chance to answer the debate.

Motion lapsed (Standing Order No. 10(6)).

11:30

Sitting suspended.