Women face unique challenges in caring for a loved one with dementia
There were no authorities to be alerted when Patricia Negri disappeared, because her leaving was so gradual. During the first stage of Alzheimer’s disease, she fell silent in the middle of conversations and sat staring into the middle distance. As it progressed, she ignored her daughter’s pleas that she bathe and wash her hair, and burned whatever food she tried to prepare for herself. Over time she lost the words she needed to communicate, along with her motor functioning and her sense of time. At some point, “She was no longer able to recognize me,” said Kathleen Negri, an elder law attorney who served as her mother’s caregiver for most of the six years she struggled with Alzheimer’s.
Negri’s challenges illustrate the unique needs women face when it comes to this devastating disease. Women are especially threatened by Alzheimer’s, which affects as many as 5.1 million Americans and has no known cure.
“Women are not only at increased risk for getting Alzheimer’s, but also more likely to take care of Alzheimer’s patients,” explains Amy Niles, president of the National Women’s Health Resource Center of Red Bank, N.J. “Thus, women bear a double burden when it comes to this progressive, irreversible disease.”
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. 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, although there are cases of early onset. While some develop dementia within a few years, others do so over 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 control of speech and bodily functions. Eventually, patients become completely dependent on their caregivers.
When they look after Alzheimer’s patients, 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 those who care for Alzheimer’s patients are at increased risk for depression and anxiety, and are more susceptible to cardiovascular disease.
“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.”
While friends and support groups can help caregivers find ways to cope, eventually many choose to provide a living situation that is designed to support their loved one. Knowing that her mother would have a full-time caring environment as well as regular meals and activities designed to optimize her quality of life made it easier for Negri to move her to an assisted living community.
The good news for Negri is that there are ways for her to protect herself. 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. And if she starts showing signs of confusion or memory loss, Negri can slow Alzheimer’s progression by getting diagnosed and taking medication early.
In more than 90 percent of people with Alzheimer’s disease, symptoms do not appear until after age 60, and the incidence of the disease increases with age—the prevalence of people with AD doubles for every five-year interval beyond age 65. Because the population of those over age 85 is reaching record levels in the United States—from 5.5 million in 2010 to 8.7 million in 2030—the number of people with Alzheimer’s is expected to more than triple by 2050. In response, Congress has created a National Plan to Address Alzheimer’s Disease, including a $156 million investment, but we have a long way to go.
“It’s hard to be positive about Alzheimer’s,” says Niles. “But we hope that some day we’ll figure out exactly what causes this disease and prevent it from ever happening again.”