Lewy Body Dementia

Alan Meale 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.