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Alzheimer Awareness

 Steve and Peg--Steve and Peg Schultz's plan was simple, one they could lay out with a pencil on the back of an envelope: They would work hard. Save their money. Retire at 55. Then freedom.

"We thought we'd travel for maybe 10 years, while our knees could still handle it," Steve Schultz said. "Then we'd settle down, with a place in Florida and one up here, kind of like my folks did. We did not see this monster coming."

That monster was — is — Alzheimer's disease. Steve, 68, and Peg, 67, hardly knew a thing about it. It wasn't part of the plan.

So in 2007, when Steve noticed the phrase "what-cha-call-it" creeping with ever more frequency into Peg's sentences, the idea that a dementia of some kind was dismantling her vocabulary simply did not occur to him.

"I need to make sure you understand," he said, "that the woman I love was the most intelligent person I've ever known."

Peg sits on a chair near the window of her room in the Memory Care Assisted Living unit of the Lutheran Home in Wauwatosa. Steve, seated on the edge of her single-size bed, takes her hand. Steve has covered the walls with photographs of people Peg no longer recognizes.

Medicare does not cover Peg's care at the Lutheran Home. Peg's care this year will cost Steve about $65,000. Out-of-pocket.

Peg and Steve worked hard. They saved their money. He'll need to dip into their retirement savings, but he'll be able to pay for Peg's care.

But that wasn't the plan.

More than 5 million Americans now have Alzheimer's disease, the most common form of elderly dementia, and the prevalence of Alzheimer's among baby boomers is expected to explode by midcentury.

The Alzheimer's Association projects that 10 million baby boomers will develop the disease. 

While studies and media stories that explore the emotional toll the disease extracts from family and friends are all but legion, the financial toll, which can also be devastating, is less understood.

And so, in December, the Alzheimer's Association interviewed more than 3,500 people across the nation and asked them about the costs of caring for family members or friends with Alzheimer's disease or other dementia. 

A report on the survey concluded that, on average, care contributors spent $5,155 a year of their own money to take care of a relative or a friend with dementia.

Amounts varied from less than $1,000 to more than $100,000.

Spouses and partners spent the most — on average, more than $12,000 a year. Adult children spent an average of $4,800, though a significant percentage — 16% — spent $10,000 or more.

These expenses, respondents said, jeopardized their own financial security and squeezed household budgets:

  • Two in five had to cut back on savings. One in five dipped into retirement savings.
  • One in five cut back on going to the doctor. One in 10 cut back on buying medicine for themselves. One in 10 cut back on their children's educational expenses.
  • Respondents said that to meet expenses, they sold vehicles, furniture, jewelry, collectibles, even homes.
  • The cost of contributing to the care for someone with dementia literally took food out of the mouths of caregivers. They were more than 25% more likely to report that they ate less or didn't have enough money to eat properly.
  • Income shrank even as expenses grew. Respondents reported working fewer hours or taking early retirement to support someone with dementia. Income losses averaged about $15,000.
  • Some respondents said they met increased expenses by increasing the hours they worked, or took second jobs, postponed retirement or went back to work.

Peg Schultz had worked for the Social Security Administration. Steve also worked for the administration, then for the National Labor Relations Board.

He's perfectly comfortable with the Byzantine regulations that govern Medicare, Medicaid, state administration of assistance programs, and the whims of private insurers.

Not so for most of those surveyed by the Alzheimer's Association:

  • Some 28% of those surveyed believed — incorrectly — that Medicare pays for nursing home care and another 37% didn't know if it did or not.

It doesn't. Custodial care in nursing homes is not covered.

  • Some 36% believed — incorrectly — that Medicaid was long-term care insurance and 25% didn't know.

While Medicaid does help people with limited incomes pay for some long-term care and medical costs, "in most instances, individuals must have depleted nearly all of their assets to be eligible," the report says.

  • About 30% of those surveyed believed their insurance covered long-term care.

"But national statistics," the report said, "indicate that only about 3% of U.S. adults and about 10% of adults older than 55 have long-term care insurance."

Couples find themselves doing things utterly alien to their sense of love and marriage, including getting divorced, to protect their assets.

"Medicaid does not recognize the modern family," says Carol Wessels, an attorney specializing in elder law. "It's devastating in so many ways."