Alzheimer’s care classes help, but few have time

NYU’s Mittelman says 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 1½ 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 as 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. Caregivers were given phone numbers to call counselors for more advice whenever they wanted.

That ongoing tailored care is “a really crucial element,” stresses Mittelman. Without it, when the patient “has a personality change and hits somebody for the first time in her life, you won’t have anyone to turn to.”

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Mittelman has begun new studies targeting training to early- and middle-stage Alzheimer’s.

And the National Institutes of Health is studying a similar program that mixes in-home and telephone training, sessions that include role-playing to let caregivers practice the coping skills they’re learning.

The NIH study has tracked 640 dementia caregivers in five states for just six months so far. But initial results agree with Mittelman: Trained caregivers report improved quality of life, and feel they do a better job.

Together, the research represents a major shift in scientists’ approach to Alzheimer’s caregiving — from an emphasis on just giving families a break through respite care, to the idea of empowering them to better handle the stress of the job.

The challenge is how to spread those findings.

The hidden stage
Have a short conversation with Bob Melnick, and it’s not immediately clear that anything’s wrong with the smiling 67-year-old. He’ll reminisce over old fishing photos; proudly tell of his two grown children; ask socially correct questions:

“How are you today?” “Want to come along while I walk the dog?”

Then the phone rings, and this former accountant fumbles it, unsure how to answer. He can’t close the sliding glass door in his kitchen. At lunch, he carefully sets his hoagie on his place mat, next to the empty paper plate.

This is the often-hidden middle stage of Alzheimer’s disease, the stage where caregivers seem to struggle most.

“Many people have a stereotypical idea that Alzheimer’s disease is what you see in a nursing home,” Mittelman says. But, “in the middle stage, there are behavioral problems which are difficult to cope with.”

Dolores Melnick has looked, in vain, for help.

As her husband was turning 60, Mrs. Melnick noticed he’d lose his wallet or keys a lot. Trouble with routine accounting work soon forced him to retire.

Mel Evans / AP Alzheimer's sufferer Robert Melnick, stands near wife Delores and one of their dogs, Kiowa, outside their home in Hainesport, N.J.

Worried, Mrs. Melnick sought long-term care insurance. She listened in as her husband was screened over the phone, aghast that he was failing simple memory tests. The insurer turned him down, and soon Alzheimer’s was diagnosed.

To fill his days, Melnick got a job at a nearby convenience store, mopping floors and doing other easy tasks until he was fired for forgetting instructions.

Mrs. Melnick is 63, two years shy of Medicare and three years away from her normal retirement date. She loves her job, a statistician at a cancer center. But she considered quitting to care for her husband, only to learn that retaining health insurance for herself plus his Medicare expenses would cost a staggering $700 a month.

“It’s kind of hard to retire,” she says with a weary smile.

But what to do with Melnick while she’s at work?

He can’t remember a plot long enough to read or watch movies. He used to take pride in household chores, but now can’t work the appliances. Even emptying the dishwasher ended when “dishes were all over and I couldn’t find them!” Mrs. Melnick says with a laugh.

He refuses adult day care. Insurance won’t pay the $17 to $22 an hour that local home-health agencies charge for a visiting aide, and Mrs. Melnick couldn’t afford that.

So she cobbled together a compromise: She pays a friend about $30 a day to stop by around noon for three hours, to make lunch, help walk the dogs and provide some companionship. Melnick spends the mornings and late afternoons alone, outfitted with an electronic tracking bracelet provided by the sheriff’s department in case he wanders outside and gets lost.

When she has an out-of-town business meeting, her 85-year-old mother-in-law comes to stay. Every few weekends, her daughter makes the three-hour drive from Washington, D.C., to help out.

And Mrs. Melnick races home from work at 5:15. If she’s late, she’ll find her husband pacing, wondering where she was. It’s a hint of Alzheimer’s classic “sundowning,” where agitation increases with dusk.

Buying respite
Some states are trying new ways to increase Alzheimer’s services. In Colorado, for example, officials experimented with giving $1,000 stipends to help families hire monitoring for their loved ones so they could attend a six-session training program called the Savvy Caregiver.

That doesn’t buy much respite, but it’s a good investment, says Cheryl Dunaway of the Colorado Alzheimer’s Association.

“The caregiver is the one who sets the stage for whether it’s a good day or bad day, calm day or chaotic day, in how they respond to the way the person with dementia is behaving,” she explains.

In Congress, Sen. Barbara Mikulski, D-Md., is pushing legislation that would provide a $3,000 federal income tax credit to offset some of the expenses and lost income incurred by caregivers of patients with Alzheimer’s and other diseases.

NIH’s Suzman says those costs increase as dementia worsens, from about $7,400 a year for moderate dementia to $17,700 for severe dementia.

Back in New Jersey, Mrs. Melnick is anxiously hoping that tax credit will help. Within the year, she expects to have to hire someone to watch her husband all day while she works.

Trying to plan beyond that brings only fear.

“Do I have to think about a nursing home in a year, two years? ... It’s not like cancer, where they say you have six months to live. They really can’t say that with Alzheimer’s.”

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