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Alzheimer’s Patients Plead for Greater Understanding and Suppor

There are now more than 5 million people in the United States living with the Alzheimer’s disease//.

At least 50 per cent of them are at the early stages, struggling to pass for normal.

As Alzheimer’s progresses, individuals may experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations.

Up to five years though, those with the affliction could try and lead a normal life. But for that to happen, those around them should be supportive.

When the caregivers are either too impatient or overprotective, patients feel even more despondent. Now many such, in early stages of the disease, are trying to come together.

Out of their individual frustrations, these patients are creating a grass-roots movement to improve services and change public perceptions. And they are making a mark, say reports. Even law-makers have begun to listen to them.

An electrician husband of an “activist patient” admits, spouses — fearful and overwhelmed — can be insensitive and impatient as their mates’ abilities decline.

“Their brains have to work so much harder, which tires them out. Their logic isn’t always linear, so there’s a tendency to think they don’t comprehend. I’m not a patient person by nature, and Mary’s losing her mental capabilities. So I have to slow down and adapt. And I have to remind myself that she still has feelings and perceptions. She still has an emotional life.”

Mr. Hebert, once an official at the General Services Administration, is 67 and retains his short-term memory, but his speech and motor skills are deteriorating five years after diagnosis, and he cannot reassemble a sandwich should one piece of bread fall off.

But he can maintain a busy schedule visiting assisted-living centers and nursing homes to exhibit his landscape photography. And sometimes his speech flows. “It feels like I’m working, ” Mr. Hebert said.

Regular bus trips to historical and cultural sites of their choosing like an African-American art museum, a glass blower’s studio or a Hindu temple are also being organized by support groups.

Alzheimer’s disease is perhaps a march to oblivion. But the process can unfold over two decades. Patients at the front end, said Paulette Michaud, manager of early stage services at the New York City Alzheimer’s Association chapter, “lose the sense of independence and control much more quickly than they need to because everyone focuses on their deficits.”

Last year, the national office of the Alzheimer’s Association declared early stage services a priority.

No one knows what causes Alzheimer’s creeping brain degeneration. It gradually robs sufferers of their memories and ability to care for themselves, eventually killing them. There is no known cure, and today’s drugs only temporarily alleviate symptoms.

Still new treatments are on the horizon as a result of accelerating insight into the biology of the disease.

Most importantly research has also shown that effective care and support can improve the quality of life the sufferers. That is what the current movement is all about, it is pointed out.

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