Training benefits Alzheimer’s caregivers, patients but is hard to find

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 1/2 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.

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 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.

Mittelman 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 1 1/2 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, 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.”