Women are being affected by Alzheimer’s disease more and more every day. They outnumber men as Alzheimer’s patients, and they also are far more likely to be Alzheimer’s caregivers.
“It’s a double-edged sword for women,” says Elayne Forgie, MS, who helps Alzheimer’s families and caretakers as President and CEO of the Alzheimer’s Care Resource Center in Lake Worth, Fla. “We’re not only acting as the primary caregiver, we’re also succumbing to the disease now more than ever.”
The latest data from the U.S. Census and the Chicago Health and Aging Project (CHAP) show that there are currently an estimated 5.2 million Americans with Alzheimer’s disease. One in nine (or 11 percent) Americans aged 65 and older has Alzheimer’s, while 32 percent over 85 have the disease.
The numbers for women with Alzheimer’s are daunting. Almost two-thirds of those 65 and older with Alzheimer’s are women. Women in their 60s have a 1 in 6 lifetime risk for developing Alzheimer’s, making them twice as likely during the rest of their lives to find out they have Alzheimer’s as it is for them to develop breast cancer. This is compared to a 1 in 11 chance for men. While women tend to outlive men and age is the number one risk factor for Alzheimer’s, that number is only partly due to longevity. “Research has shown that that alone cannot account for the rates,” says Kenneth Freundlich, PhD, Clinical Neuropsychologist and Managing Partner with the Morris Psychological Group in Parsippany, N.J. “Estrogen may be protective against beta-amyloid toxicity, the proteins involved in developing the plaques that are seen in Alzheimer’s. There are some theories and research that show that it has to do with the changes of estrogen over their lifetime, and estrogen providing some protection, but then they later develop Alzheimer’s.”
While the cause of Alzheimer’s disease is still unknown, researchers are looking into the reason why women are more likely to get Alzheimer’s than men—and the answer may be found in our genes. In a recent Stanford University study published in the Annals of Neurology, researchers discovered that women with the ApoE4 gene variant were nearly twice as likely to get Alzheimer’s than men with the same allele. The ApoE4 gene variant puts a person at a higher risk for Alzheimer’s. More research is still needed to find out why this occurs and why women are affected by the disease differently.
Women as Nurturers and Caregivers
Unless we find a cure for Alzheimer’s, we can expect the numbers to triple to 16 million. As the U.S. population ages, baby boomers in particular, Americans are expected to have a longer lifespan than previous generations.
“The prevalence of Alzheimer’s will increase substantially,” says Barry D. Jordan, MD, M.PH, Director of the Brain Injury Program & the Memory Evaluation Treatment Service (METS) at Burke Rehabilitation Hospital in White Plains, N.Y. “There will be more women affected with Alzheimer’s and there will be more caregivers [who] will more than likely be female.”
Women are more likely to get Alzheimer’s than men, yet there are 2.5 times more women than men taking care of someone with Alzheimer’s around the clock, usually a spouse or a parent. But how does that happen?
“It may be related to the fact that the man is typically the higher income earner and it makes more sense for the woman to give up the job” to care for a family member with Alzheimer’s, says Dr. Freundlich, “but it often has to do with the differences in the roles men and women take in society.” “We’re caregivers by nature,” says Forgie. “We’re moms, daughters, sisters, friends—sometimes we take on that caretaker role from a very young age. So many of us are caring for our parents and our kids, and we extend that role as the aging process affects our family.”
Another important factor to the equation: women’s longer life span. “If the husband or the male develops Alzheimer’s, the female would usually take care of that individual,” says Dr. Jordan, “and since women live longer, when they develop the disease there may not be anyone available to take care of them. If there aren’t any siblings or children to take care of the female, then they would probably have to be institutionalized.”
More men, however, are becoming Alzheimer’s caregivers. The gender balance is closer to 50/50 among males in the 18-to-49 age group (at 47 percent), while just 32 percent of caregivers are men in the 50-plus age group. As the population continues to age, and societal gender roles become more flexible, will we start to see the numbers shift?
“Perhaps we’ll see that change,” Forgie says. “But how can women outlive men if they’re taking on that caregiver role more now, and the burden of caregiving increases our risk of illness?”
Alzheimer’s Toll on Caregivers
Caring for a loved one with Alzheimer’s is mentally, physically and emotionally exhausting. It’s a 24/7 job, and Alzheimer’s caregiver burnout is a very real possibility not to be ignored.
“What I’ve found is that caregivers who are caring for these patients are not doing OK,” says Forgie. “Women become extremely affected physically and emotionally, and experience physical manifestations of stress, such as gastrointestinal problems. Over the years I’ve seen many instances where the primary caregiver caring for her husband will have a heart attack, and then we end up with two patients.”
“It wears people down,” says Dr. Freundlich. “They often don’t sleep well because they’re staying up at night taking care of the person.” That chronic stress can trigger or exacerbate certain autoimmune conditions, such as alopecia, celiac disease, diabetes, Graves’ disease, Hashimoto’s disease, irritable bowel syndrome (IBS) and lupus. “It’s not just the emotional toll; it’s the physical stress, and not being able to rest enough or have any downtime.”
Caring for the Caregiver
As a caregiver for someone with Alzheimer’s, you also have to remember to take time out for yourself. Giving yourself a break every now and then will refresh and recharge you, so you can continue providing the best care possible.
“Being a caregiver to anyone with Alzheimer’s can be extremely stressful,” says Dr. Jordan. “That’s why it’s important for caregivers to have rest periods to reduce the stress and strain of caring for someone with such a challenging disorder.” Because an Alzheimer’s patient is incapable of stopping or altering their behavior, it’s important for the caregiver to learn coping skills and how to manage stress. That’s why reaching out to organizations for Alzheimer’s caregivers can help.
“You can’t teach the Alzheimer’s patient; you have to teach the caregiver,” Forgie says. Focusing on empowering the caregiver, her nonprofit offers education on the disease and how caregivers can deal with patients, and also provides support groups. “We basically hold the caregiver’s hand throughout the whole journey of Alzheimer’s disease so they could go back and be a stronger caregiver. We want the caregiver to be able to survive this disease.”
Learning how to thrive as a caregiver can also improve the quality of your patient’s care, so it’s important to not feel guilty about taking care of your own needs as well. Reaching out and asking for the help and resources you need as a caregiver can only benefit you and the patient.
Of those caregivers assisted and surveyed by the Alzheimer’s Care Resource Center, “93 percent will report improved quality of life, less stress and a better relationship with the patient and their family,” Forgie says. “They’re stronger when they walk out. They feel better. By affecting the caregiver’s life in a positive way, you have a direct effect on the patient.” ■
Discover the resources available to you as an Alzheimer’s caregiver at these websites.
• Fisher Center for Alzheimer’s Research Foundation’s Resource Locator: http://www.alzinfo.org/resource-locator
• The Alzheimer’s Care Resource Center: http://alzheimerscareresourcecenter.com —24-hour Alzheimer’s care crisis line: 1-800-209-4342