Lewy Body Dementia

Conor McGinn Excerpts

Tuesday 26th April 2016 Westminster Hall

[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.