Living with Lewy Body Dementia

lewy body dementiaRobin Williams’s widow recently revealed what she believes led to her husband’s suicide — the unbearable symptoms of Lewy body dementia (LBD).

“Robin Williams’s tragic death has raised awareness exponentially,” says Ashley Bayston, founder and chair of the Lewy Body Society, dedicated to raising awareness and funding research of Lewy body dementias. “It’s just a shame that someone who brought such joy to people had to die for this to happen.”

Bayston, who founded the UK charity after her mother was diagnosed with the disease, helps us explore the realities of life with LBD and the most promising treatments and resources available.

What Is Lewy Body Dementia?

The umbrella term “Lewy body dementias” includes both dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). Both are caused by the misfolding of the protein alpha-synuclein in the brain, which causes cell death. The difference, says Bayston, is the timing of symptom onset. If cognitive symptoms precede motor symptoms by a year it is DLB, and if motor symptoms precede cognitive symptoms by a year, it is PDD.

Lewy Body Dementia Hallucinations

Unfortunately, one of the hallmark symptoms of Lewy body dementia is hallucinations.

“Some people have pleasant hallucinations, but more often they are frightening,” says Bayston. “When I was at university in the late ‘60s I watched people tripping out on LSD. I never had any desire to drop acid because it was so frightening to see what it did to people. Years later when I witnessed my mother’s terrifying hallucinations, I was reminded of this. They were like someone on a very bad trip.”

That’s why Bayston believes that Robin Williams’ death was due to his acting out on a terrible, LBD-induced hallucination.

“From the time I heard that he had LBD, I have been convinced that this is what caused him to commit suicide,” she says. “To go back to the LSD analogy, you read about people throwing themselves off roofs thinking they could fly, or killing someone who they think is a many-headed hydra, or having other vivid delusions.”

Lewy Body Dementia Treatment

Though there is currently no cure for Lewy body dementia, there are several promising treatments available.

Anticholinergics (e.g., Aricept, Exelon) are a class of drugs that were developed for Alzheimer’s disease but have been shown to slow the progression of Lewy body dementia for some patients, says Bayston. These drugs have only been approved for treatment of LBD in Japan; everywhere else they are prescribed off-label. There is also a drug going into stage 3 trials that has been developed for controlling hallucinations in patients with LBD.

In addition, says Bayston, the Lewy Body Society is currently funding three important research projects: one focused on biomarkers and using skin-punch biopsies to look for alpha-synuclein, one exploring possible hereditary factors, and one seeking a possible link between inflammation and Lewy bodies.

Coping with Lewy Body Dementia

As awful as the disease can be, it is possible to live with Lewy body dementia – but the burden of providing a decent quality of life falls on caregivers.

“Studies have shown that because the symptoms are so dramatic and include ‘Parkinsonisms’ [Parkinson’s-like symptoms] as well as cognitive decline, it is much more difficult than caring for someone with Alzheimer’s or the other dementias,” says Bayston. “It takes a huge amount of patience on the carers’ part.”

Caregivers can help loved ones with Lewy body dementia by keeping communication simple, providing a safe and somewhat stimulating environment, and helping them maintain their sense of worth, says Bayston, who acknowledges that caregiver guilt is common because of the frustration of not being able to make their loved ones better.

“Looking after someone with LBD – or any form of dementia – is the ultimate expression of unconditional love.”

LEARN MORE: Visit the Lewy Body Dementia Association for more information, resources, and support groups across the United States.

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