Caring for a loved one with Alzheimer's disease can be a 24/7 job, taking an emotional, financial and even physical toll on caretakers, especially if they're women, according to the Shriver Report on Alzheimer's.
The report, released Oct. 15, details the special burden women face as caretakers. The majority of Alzheimer's patients and caretakers are women, and more than half of them report serious emotional and physical stress that results from taking on the care of their ailing loved ones.
"All my time is taking care of my mother. Your whole life is devoted to somebody else, as if you had a little baby," says Ana Marie Ortega, 63, who has been caring for her 89-year-old mother Teodora Ortega for the past decade since she was diagnosed with Alzheimer's.
As with many caretakers, live-in nurses or nursing homes were not an option for Ortega because of financial and personal reasons, leaving the Sacramento, Calif., native to care for her ailing mother on her own.
"The nursing home was not what I wanted for mom," she says. "My mother practically raised my daughter so I could get a college education. She worked so hard all her life. You have to do the moral thing. Life doesn't repeat itself. She might be gone within a year or two and I don't want any regrets."
That choice has meant a lot of sacrifice for Ortega: She is on leave from her job at the governor's office so she can care for her mother, leaving tight finances and little time to herself.
"It's an emotional, mental, physical struggle," she says. "She can get very angry and mean when the medication is wearing off and she wasn't that way before. It's a cruel disease; it robs the person of their life and the people around them. This time it happens to be me because I chose to take care of mom."
Women as the 'Keepers of Kin'
"Taking care of elderly family members is still seen as women's work," says Mary Guerriero Austrom, professor of Alzheimer's Education at the Indiana University School of Medicine in Indianapolis. "Women are still the major kin keepers of the family.
"In a spousal situation, men do a phenomenal job, and we shouldn't lose sight of that, but the classic thing is women as caregivers, often daughters or daughters-in-law."
The idea that women are more likely to take on care duties for Alzheimer's is consistent with past research on the subject, experts say. "In the studies we've done, 75 percent or more of the caregivers have been women," says Kenneth Hepburn, professor and associate dean for research at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta.
And because women are "more likely to be sandwiched between caregiving roles as mother and as caregiver for a parent," the women can face more stress and more total caregiving than their male caretaking counterparts.
Of female caretakers in the Shriver Report, nearly half report their stress levels as a five on a scale of one to five. Nearly half also report spending less time with their spouses or partners because of caretaking duties and 39 percent say that it puts a strain on their marriages.
"Women often are not only caregivers for their parents but primary caregivers for children and others," says Dr. Ladson Hinton, director of Education Core for the UC Davis Alzheimer's Disease Center Sacramento, Calif. "Women with professional careers have an amplification of stress and competing demands."
The kind of caretaking women take on is also different from men's, according to the report. Women often dealt with the day-to-day duties such as bathing, feeding and assisting with going to the bathroom, while male caretakers are more likely to handle finances, fix things around the house or run errands.
"I will see an adult son doing groceries and paying bills and they don't seem to be stuck in the day-to-day requirements of that hands-on caregiving that daughters feel they have to do," Austrom of Indiana University says.
Dealing with the repetitive, day-to-day tasks may contribute to the physical stress seen in caregivers, including reduced immune function, slower wound healing and high levels of stress hormones, authors note in the report.
The Emotional Burden of Caretaking
The stress of caring for a loved one suffering from Alzheimer's takes a mental toll on female caretakers, often contributing to greater levels of anxiety and depression than seen in their male counterparts.
One in four caretakers experience clinically significant anxiety in relation to caretaking, with women being more affected by men, the report finds.
The biggest gender gap in the study was the extent to which caretakers feared developing Alzheimer's themselves. Women were more fearful of this fate and three-quarters of them thought that having a parent with the disease meant they had a "good chance" of getting it themselves.
"Women in general report higher rates of depression or depressive symptoms, so you'll see a spike in the number of female caregivers reporting depression," Austrom says.
Given the strains inherent in the duties of caretaking, it is more likely that women will experience anxiety and depression and become overwhelmed with their duties as caregiver.
The increased risk for physical and mental consequences of caretaking for women highlights a great need in the public health sphere when it comes to caring for those who care for others, the Shriver Report notes. Beyond more paid-care options and more flexible work schedules offered by employees, the report emphasizes the need to assess caretakers before offering support.
"The many differences among caregivers and caregiving situations mean that it is essential to understand each caregiver's situation before trying to identify ways to support that caregiver," the authors write.