Alzheimer’s care classes help, but few have time

updated 3:42 p.m. ET Aug. 12, 2007

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 1½ 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, N.J., 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.”

A skyrocketing problem
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?

Exercise your mind Getty Images Wordy brain workouts: Think of the "S" word Words with double meanings

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 Dr. Richard Suzman of the National Institute on Aging.

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.

Finding their balance
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, Pa., 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.

The conversation is, well, unconventional.

“I want to hit you,” Dorothy whispers.

“You do not want to hit me,” Louise calmly responds. Minutes later mother and daughter are grinning affectionately.

“She’ll hit you and two minutes later, she loves you,” says Dorothy’s husband, John Eckert, 88.

Not too long ago, the Eckerts despaired of achieving this calm. Dorothy’s mild-mannered Alzheimer’s suddenly morphed into outright aggression. She climbed furniture, pulled the TV on herself, tried to climb out the window.

Area aging services offered little advice. The Eckerts finally found the right mix of medication and caregiver tricks. Take Dorothy’s night roaming, a dementia trademark. Her husband installed bed rails; she crashed over them. He slept holding a belt tied to her waist; she slipped it off without waking him.

Now the couple sleeps on a mattress on the floor. Large wind chimes jangle when Dorothy’s up.

“In the beginning there was pressure. Now we expect it’s going to happen,” her husband says of new symptoms. “You go along with the flow.”

John Eckert brushes aside questions about the strain. He looks fit but has had prostate cancer, a small heart attack and mild stroke. Louise tried to hire a respite-care service so her dad could take a walk. But it requires a four-hour daily minimum, more than they need. Alzheimer’s day care runs in the mornings, when Dorothy sleeps.

They manage because Louise, the couple’s youngest daughter, lives with them and can rush home from her counseling job at a nearby school if needed.

They’re determined to make Dorothy’s days as lighthearted as possible.

“You could be mad about it, or constantly sad about the whole thing, but why? This is just who Mom is now,” Louise explains.

So, they play Bobby Darin, and Dorothy dances around the dining room. Song done, she curls onto her husband’s lap, head tucked under his chin. She can’t recall his name, or the last name they’ve shared for 60 years. But she can cuddle.

“She knows I belong here, I guess,” John says.

MORE FROM ALZHEIMER'S DISEASE

Alzheimer's disease Section Front

Going high-tech to track Alzheimer’s patients Murder case a glimpse into stress of caretaking Dementia toll climbs to 35 million worldwide ‘Long sleepers’ show higher dementia risk Cold or flu may speed Alzheimer's memory loss 1 in 5 fewer may get Alzheimer’s due to finding Unhealthy habits mar thinking, memory skills Keep cholesterol in check to ward off dementia New tests could aid early Alzheimer's diagnosis Newsweek: Why our approach to Alzheimer's may be wrong Alzheimer's disease Section Front   Add Alzheimer's disease headlines to your news reader: