Remember ME - You Me and Dementia

May 17, 2011

CANADA: Rare form of dementia increasing with aging population

SCARBOROUGH, Ontario / CTV Television / Health / May 17, 2011

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The word dementia is mostly associated with Alzheimer's disease. But there's another form of dementia that's also devastating, combining the memory loss of Alzheimer's with the physical problems of Parkinson's disease.

Geoff Kalchman is a retired doctor who is coping with Lewy body dementia,
a condition that affects about 1.5 million people in North America.

Geoff Kalchman is a retired doctor who is openly talking about a disease he is coping with.

On the surface, the symptoms are subtle: A slight change in handwriting, an increase in car accidents, a shuffling walk, mood and memory problems.

However, it's all part of an increasingly common form of dementia that combines the mobility problems of Parkinson's with the confusion and memory loss of Alzheimer's disease and occasionally the hallucinations that come with other disorders.

Kalchman has Lewy body dementia, a condition that affects about 1.5 million people in North America -- a disease many of us have not heard of.

Discovered by scientist Friederich H. Lewy in early 1900s, it's caused by abnormal protein deposits in brain cells that disrupt the brain's functions. It is the second-most common form of dementia after Alzheimer's disease.

Scientists don't know what causes Lewy body dementia, but it's expected to become increasingly common as the population ages.

Estelle Getty, an actress from the long-running TV show "Golden Girls", died of LBD.

Baycrest neurosurgeon Dr. Tiffany Chow said the condition is often initially misdiagnosed as just Alzheimer's or Parkinson's, but when both symptoms emerge the clear diagnosis can be made.

Chow said more services will soon be needed to help patients deal with the condition.

"A significant percentage (of people) are going to get dementia with Lewy bodies," she said. "We will need to create resources for that growing population of patients."

Kalchman is one of those people. On the surface, he appears to be a healthy 74-year-old enjoying his retirement in midtown Toronto.

"I feel perfectly fine," said Kalchman, who is in the early stages of the illness which is kept under control by medication for the time being. "I feel perfectly fine, but I know in the back of my mind that I'm not perfectly fine."

He first realized something was wrong when his handwriting started to change. He got in several car accidents, started having mood swings and his walk became unsteady.

"I can recall being out walking with him and all of a sudden he just fell," recounted Kalchman's wife Lois. "People stopped to help us and then we walked along further because he didn't want to come home and then he fell again. There was something wrong and I didn't know what."

Another symptom of LBD is a change in facial expression. Lois at first didn't recognize it as a symptom.

"His face was a mask, there was no expression," she said. "I don't know how many years he's had it and that bothers me."

His disorder is being controlled with a combination of medications for the rigidity of Parkinson's and the memory issues of Alzheimer's.

"Right now he's with the medication, he's more sociable, he can walk better, there are people who think there is nothing wrong," said Lois, a former Toronto Star sports writer.

But LBD is a progressive disorder. Patients over time become less mobile. Walking becomes difficult as does feeding. Many end up in wheelchairs and become immobile. Some patients have hallucinations – and report seeing people and animals.

There is no cure and the condition is fatal usually within 10 years of diagnoisis.

This is one of the "dementias" behind Alzheiemr's, the other is frontotemporal dementia. Many people only know of Alzheimer's, though these other two are large and groing issues.

People with LBD often need more care becasue of the combination of movement, memory and cognitive problems..

There also is not much research into Lewy body dementia itself, which is why Kalchman says he's chosen to make his diagnosis public in an effort to educate others.

"I know that I have it and I know I can't do anything about it," he said. "If we made (Lewy body dementia) more accessible to the public more people would come forward."

"I want people to know that you have to admit early, that you have to seek help," his wife Lois adds.

With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip

© 2011 BellMedia