Tue, Aug 14, 2007 - Page 16 News List

A duty of care

Caring for Alzheimer patients can take a massive toll on untrained caregivers who are unable to afford the high price of professional support

By LAURAN NEERGAARD  /  AP , WASHINGTON

Alzheimer's patient Dorothy Eckert and her husband John Eckert hold hands at their home in Norristown.

PHOTO: AP

The findings are stunning: Offering simple training to people struggling to care for loved ones with Alzheimer's disease not only eases their burden - it even can keep patients out of nursing homes for an extra 1.5 years.

But the exciting research also runs headlong into a grim reality.

Alzheimer's caregivers seldom can make time in their daily grind to seek out that kind of help.

And when they do, they too often find waiting lists for services, or programs geared only toward people with advanced disease and not the larger pool in the purgatory that is dementia's decade-long middle ground between independence and helplessness.

That is one of Dolores Melnick's biggest frustrations.

Her husband refused to enroll in the "day care" for Alzheimer's patients near their Hainesport, New Jersey, home. It was hosting a singalong, and workers were setting up plastic bowling pins, too childish for Bob Melnick.

That meant no time for her to sneak off to a caregiver support group. On weekdays she worries about whether he'll be OK because he's home alone while she's at work.

"I feel bad sometimes because he's home. I feel bad that I have to leave in the mornings," Mrs. Melnick says, eyes brimming with tears. "I think he realizes he can't do much."

More than 5 million Americans are living with Alzheimer's disease. It afflicts one in eight people 65 and older, and nearly one in two people over 85.

Worse, as the population ages, Alzheimer's is steadily rising. Sixteen million are forecast to have the mind-destroying illness by 2050, not counting other forms of dementia.

Those figures are cited repeatedly in the push for more research into better treatments. But a frightening parallel goes largely undiscussed: As Alzheimer's skyrockets, who will care for all these people?

And will the long-term stress of that care set up an entire population - once-healthy spouses and children - to suffer years of illness, even early death?

"I don't think society and policymakers have fully grasped the future magnitude of what we're up against, and how massive an operation we have to begin ... to deal with this," says Richard Suzman of the National Institute on Aging.

Trial and error

Already, an estimated 10 million people share the task of caring for a relative or friend with dementia, the Alzheimer's Association estimates. Nearly one in four provides care for 40 hours a week or more.

Handling the wandering, aggressive outbursts and incontinence - plus eventual round-the-clock monitoring - is very different than, for example, learning to lift someone who's physically impaired but won't fight the caregiver.

Those are skills that families must be taught, says Mary Mittelman of New York University's School of Medicine, who is leading a new movement to develop customized training programs for Alzheimer's care.

Today, most learn through trial and error.

Louise Eckert sits her 85-year-old mother, Dorothy, in a chair backed against the wall and pushes a heavy table in front of her. It keeps her from tipping her chair backward like a schoolchild.

It's noon, but Dorothy roamed her Norristown, Pennsylvania, home for much of the night and just woke for breakfast. Louise spoon-feeds her mother: grapes and prunes mixed into cereal; toast cut into bites; Alzheimer's pills crushed into cottage cheese so she no longer can spit them out.

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