Kathleen and Patricia Negri

(WOMENSENEWS)–When Patricia Negri left her daughter, she disappeared by degrees.

During the first stage of Alzheimer’s disease, she fell silent in the middle of conversations and sat staring into the middle distance.

In the moderate stage, she ignored her daughter’s pleas that she bathe and wash her hair.

In the late stage, she lost the words she needed to communicate along with her motor functioning and her sense of time.

“In the end, she was no longer able to recognize me,” says Kathleen Negri, an elder law attorney in Denver, Colo. “But when she died, all I could do was rejoice because I knew she was finally free.”

The story of Negri and her daughter Kathleen, who served as her mother’s caregiver during the six years she struggled with Alzheimer’s, illustrates the unique needs that women face when it comes to this devastating disease.

Women are especially threatened by Alzheimer’s, which affects 4.5 million Americans, has no cure and can lead to emotional, physical and financial ruin, according to a recent report by the Red Bank, N.J.-based National Women’s Health Resource Center, Inc..

“Women are not only at increased risk for getting Alzheimer’s, but also more likely to take care of Alzheimer’s patients,” says Amy Niles, president of the National Women’s Health Resource Center. “Thus, women bear a double burden when it comes to this progressive, irreversible disease.”

Women More Likely to Develop Alzheimer’s

Though women are only slightly more likely to develop Alzheimer’s than men, its prevalence among women is twice as high simply because women live longer, with a life expectancy of 80 years versus 75 for men. Half of all women over 85 in the U.S. will eventually develop this disease.

Women also face unique health conditions that boost their risk. More women than men struggle with obesity, diabetes and high cholesterol–conditions that increase the likelihood of developing Alzheimer’s.

Alzheimer’s begins when proteins in the brain stop performing their normal function and instead cluster into two types of lesions: neurofibrillary tangles and amyloid plaques. Over time, these brain lesions start to kill brain cells and erode learning, memory and reason.

Though some people have a genetic predisposition for Alzheimer’s, most develop the “sporadic” form of the disease and do so at an average age of 80. While some develop dementia within a few years, others do so within a decade or longer.

Alzheimer’s advance is generally broken into three stages. The first is marked by confusion, memory loss and judgment problems. The second is marked by anxiety, insomnia and wandering. The third involves loss of appetite and speech, bladder and bowel control. Eventually, the disease leaves patients so debilitated that they become completely dependent on their caregivers.

Women Caregivers Face Stress, Burnout

The typical Alzheimer’s caregiver is a 46-year-old married woman who works outside the home, reports the San Francisco-based Family Caregiver Alliance.

Social factors make women more likely to take on the caregiving role, says Niles. “Women are the health CEOs of their households,” she explains. “We tend to put everyone else first even though it means putting our own needs second.”

Emotional factors also play a part, says Negri. “Women have more of a sense of responsibility and a more natural urge to take care of others,” she says. “We’re more likely to offer backrubs when someone else is sore and more likely to make a meal when someone else is hungry.”

When they look after Alzheimer’s patients, female caregivers not only dress, bathe and feed them, but cope with violent outbursts and the possibility that their loved ones will wander out of the house whenever their backs are turned.

This workload–and the accompanying stress–can take their toll. Studies show that women who care for Alzheimer’s patients are at increased risk for depression and anxiety and twice as likely as other women to develop cardiovascular disease.

While caring for her Alzheimer’s-stricken mother, Mary Rolsch of Lakewood, Colo., often felt pushed beyond her limits. There was the pain of watching her mother put toilet paper in the refrigerator, mop the floor with wood stain and try to subsist on Milky Ways washed down with beer.

There was the strain of having to care for her as if she were a child. Then there were all the other stresses that Rolsch was juggling: shuttling her son and daughter to basketball practice, holding down a full-time job at a local bank and studying nights to become a certified financial planner.

“During those three difficult years, I lost my temper one too many times,” says Rolsch, whose mother died of complications from Alzheimer’s in 2002. “I felt like I was short-changing everybody: my husband, my kids, my boss, my mom and myself.”

Whether they vent their frustrations to friends or join support groups sponsored by the Chicago-based Alzheimer’s Association, many caregivers work to find ways to cope.

“I learned to limit my time with my mother–and take time for myself,” says Negri. “I got together with friends. I got massages. I kept a journal. And some days, I sat down and cried.”

Like most Alzheimer’s caregivers, Rolsch and Negri were eventually forced to put their mothers in nursing homes for necessary round-the-clock help. Giving patients up to the care of others can be a wrenching choice–and an expensive one, with the average nursing home in the U.S. costing $42,000 per year.

Health Advocates Battle Alzheimer’s Threat

The good news is that women can take steps to protect themselves from Alzheimer’s. Studies show that getting regular exercise, eating lots of fruits, vegetables and fish, and keeping the mind active can help ward off the disease. So can taking a pass on hormone replacement therapy, which can double the risk of Alzheimer’s.

If they start showing signs of confusion or memory loss, women can slow Alzheimer’s progression by getting diagnosed and taking medication early.

Because baby boomers are aging and because the population of those over age 85 is reaching record levels in the U.S., the number of people with Alzheimer’s is expected to more than triple by 2050.

To help meet the needs of the aging population, Congress has earmarked $700 million in federal funding for Alzheimer’s research this year (a $20 million increase over funding for 2004). Scientists are developing new drugs in addition to the five that are already FDA-approved. They also hold out hope for a vaccine that could help male and female patients alike.

“Whether you are a caregiver or a patient, it’s hard to be positive about Alzheimer’s,” says Niles. “But we hope that some day, we will figure out exactly what causes this disease and prevent it from ever happening to any woman ever again.”

Molly M. Ginty is a freelance writer based in New York City.

For more information:

Alzheimer’s Association:

National Women’s Health Resource Center–
“Women and Alzheimer’s Disease”:

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