Training can help in Alzheimer’s care

Trained caregivers experience less depression and fewer health problems.

ASSOCIATED PRESS

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 11⁄2 years.

But the exciting research 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, not the larger pool in the purgatory that is dementia’s decade-long middle ground between independence and helplessness.

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.

Caregivers

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, themselves?

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, said 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.

One family’s struggle

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.

Making it work

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 school if needed.

Specialized training

NYU’s Mittelman said customized training can help caregivers ease the chaos that the Eckerts battled through, and proved it with a one-of-a-kind experiment.

She tested 406 elderly New Yorkers caring for spouses with Alzheimer’s. Half received training tailored to their family’s unique needs. Half got today’s standard, a list of Alzheimer’s resources.

Mittelman tracked these families for up to 17 years. Custom-trained caregivers kept their loved ones out of a nursing home for an average of 11⁄2 years longer than their untrained counterparts.

With annual nursing home costs now averaging $60,000, that’s a savings of $90,000 per patient, Mittelman reported last fall in the journal Neurology.

It didn’t come at the spouse’s expense: Trained caregivers experienced less depression, and fewer physical health problems.

Importantly, the training was simple: Social workers met with caregivers once a week for six weeks, to assess each family’s circumstances, discuss how Alzheimer’s worsens, and teach coping skills.