Alzheimer's Toll on Women.

Of all the health care problems women confront, from birth control to breast cancer to heart disease, perhaps the most dramatic, and least talked about, is Alzheimer's.

Because women live longer than men, they are more likely to get Alzheimer's. Women make up 72 percent of the population' over the age of eighty-five, and nearly one-half of this group has Alzheimer's. Women are also much more likely to care for a family member who comes down with Alzheimer's-related dementia.

Eighty percent of those caring for a relative with Alzheimer's at home are wives, daughters, and other women who provide the care for free. According to the Alzheimer's Association, the total annual value of this "invisible" care is $196 billion. That dwarfs the combined cost of nursing home care ($32 billion) and paid home care ($83 billion).

A unique effort in Wisconsin by the university and state government to diagnose patients early and connect families with the support they need could provide a model for policymakers in Washington. Early diagnosis is important because new drugs can slow the progress of the disease. And some kind of comprehensive effort to help patients and caregivers is becoming more and more urgent.

Dr. Mark Sager, director of the Wisconsin Alzheimer's Institute Department of Medicine, explains: "Very few people actually have long-term care insurance. So this is one of the few examples of health care in our country where we really don't have a safety net. Most women who are caregivers for husbands, for example, will impoverish themselves until they reach the eligibility limit for Medicaid. Only then will they become eligible for home and institutional care."

Mary Pike is one of those wives and mothers who unexpectedly became a full-time caregiver when her husband developed Alzheimer's. When she could no longer care for him at home, she moved her husband to Manor Care nursing home in Madison, Wisconsin, where she visits him twice a day.

This isn't how she imagined spending her retirement. She and her husband, Bob, a World War II veteran who once managed a truck company, loved to go camping and to travel. They visited their four children on trips to South America and Japan. In 1992, they were on a trip to Finland when Bob inexplicably got lost. Soon, other bizarre symptoms appeared. Bob Pike got his days and nights confused. He told Mary he wanted to go home when he was already at home.

It took the family almost a year to realize Bob fit the profile for Alzheimer's disease. Their family doctor, who was also a neighbor, spotted the symptoms and referred Bob for a formal diagnosis of Alzheimer's.

That was the beginning of what Mary Pike calls her "journey"--learning about Alzheimer's and struggling to take care of Bob.

"Now when I look back, and knowing more things than I knew then, it would have been easier, and I would have not gotten upset as quick about some things as I did," she says. "That always instills a little bit of guilt in caregivers--to think they didn't do as good as they could have. That's why it's important to seek out early help from the Alzheimer's Association, and get early diagnosis, so that you can understand the strange behaviors that you can expect and ways to deal with them. It makes it just a more pleasant journey for everybody."

The love between Mary and Bob Pike is very obvious. She pats him constantly, and he responds to her voice in a way he does not to anyone else's. She tucked her husband into bed on the day I visited them at Manor Care, kissing him and promising she would be back after his afternoon nap.

Who is Alzheimer's harder on, I wondered, the patient or the caregiver?

"Sometimes I think the patients are in their own world. And if they have people that are kind taking care of them, at least in my husband's case, he's not really frustrated with being here," Mary Pike said. "But it's hard getting used to being by yourself when you have lived with someone for forty-nine years, you know. It's hard to be alone and have to do the things that they used to take care of as well as the other things, plus worrying. So I think sometimes the journey is harder on the caregiver."

Mary Pike has thrown herself into an effort to make things easier for other caregivers, volunteering at the Wisconsin Alzheimer's Institute, and helping to get the word out.

With the support of private foundations, the Wisconsin Alzheimer's Institute both promotes Alzheimer's research and builds a network of diagnostic clinics around the state. University of Wisconsin Chancellor David Ward explains that it's all part of the so-called Wisconsin Idea.

"It goes all the way back to the early part of this century when one of my predecessors, Van Hise, and Governor La Follette, of the long La Follette family tradition, wanted the University to have, in addition to its academic mission, a utilitarian mission--the idea of serving the public," Ward says.

Dr. Chris Koeppl, who runs the Wisconsin Alzheimer's Institute's diagnostic clinic in Rhinelander, Wisconsin, says the project is particularly important in far-flung parts of the state.

"What I've found in the rural environment is that patients sometimes will simply forgo that care if it's not accessible to them. So access to patients in smaller areas is key," Koeppl says.

Judy Durkee, who works with Koeppl at the Rhinelander clinic, describes how the informal setting helps patients by bringing in psychologists and financial planners, as well as doctors and nurses. "We can sit around the table, and it's not a medical setting. It's more like, let's talk about what's going on with my wife, or what's going on with my husband," says Durkee. "And he's sitting right there with you. And he has a chance to say, `Yes, I am afraid. I did get lost driving, anal it scared me. And nobody seems to understand.' And then a daughter will chime in, `Yeah, I'm worried about you, Dad.' Pretty soon we have family talking to each other, which wouldn't happen in a normal clinical setting."

But the memory clinics can't reach everyone.

Chancellor Ward points out the inadequacy of any small-scale approach: "As you scale up to meet a social need, the university doesn't have that capacity. It can be the model. It can be the pilot. But then the state has to come in and generalize it upwards. We just simply don't have the resources, the people, to do more than that," he says.

Expanding the Wisconsin experiment to the national scale will require political will--and money. Ironically, women like Mary Pike, who go to heroic lengths to care for their loved ones, might be letting policymakers off the hook.

"It's the informal care system and informal care provided by women that allow politicians to vote less for long-term care," says Dr. Sager. "The aging of our society means that we're going to have more and more women, and more and more older adults in general, affected by this disease."

Never was there a health care issue that made the urgent need for national health insurance clearer. Half of all baby girls born today will live to be 100 years old, Sager points out, and a third of those survivors will have Alzheimer's disease.

"To me, this means that we're headed toward a crisis in long-term care," he says.

If we can do something to guarantee health insurance for all those aging women and their family members now, there is still time to head off the crisis.

Ruth Conniff is Washington Editor of The Progressive.