Lewy Body Dementia

Jim Shannon Excerpts

Tuesday 26th April 2016 Westminster Hall

[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.