As California’s population ages, the burden of Alzheimer’s is increasingly falling on women. In response, the state has launched a new initiative aimed at raising public awareness about the disease and promoting early detection.
Two-thirds of those diagnosed with Alzheimer’s nationwide are women, data shows, with many experiencing social isolation, misdiagnosis and stigma. Women also account for 60% of those caring for an Alzheimer’s patient, which can bring adverse personal, professional and mental health consequences due to unpaid and informal caregiving responsibilities.
At an Ethnic Media Services briefing, practitioners and caregivers discussed why Alzheimer’s hits women the hardest, what can be done to ease this burden, and how caregivers are helping those with the disease.
California taking on Alzheimer’s
“In 2019, Governor Newsom announced the creation of the groundbreaking task force responsible for submitting recommendations on how California can prevent and prepare for the increase in Alzheimer’s and other diseases causing dementia,” said Dr. Wynnelena C. Canio, an appointee to the task force and the chief of geriatrics at Kaiser Permanente San Rafael and Petaluma.
There were 660,000 Californians living with Alzheimer’s in 2019; this is expected to more than double to nearly 1.5 million in 2040.
While the state’s population is projected to grow in that time by 16%, the number of people living with Alzheimer’s is projected to grow by 127%, not including unreported cases.
“Never has this issue been more important,” said Canio. “The task force’s final report included 10 major recommendations included in the state’s Master Plan for Aging, one of them being the creation of a multilingual, multicultural, and intergenerational Alzheimer’s education campaign.”
Alzheimer’s education helps no single population more than it does women, who at age 45, face a one in five lifetime risk for the disease, compared to one in 10 for men.
Overall, Californians who live to be 65 or older have a one in six chance of developing Alzheimer’s, and a one in five chance of developing any kind of dementia.
“These numbers represent real people,” said Canio. “My own grandmother was diagnosed with dementia … as she was losing her ability to cook, move independently and shower on her own, our family took turns caring for her.
“One day as I was helping her with bathing, she cried and said ‘Why are you helping me? I bathe you,’” Canio continued. “I responded, ‘You’re right, you did. So now it’s my turn.’ … The experience I had caring for her and thousands of Californians living with dementia inspired me to help this population often unable to speak for themselves.”
Women at higher risk
“Why are women more at risk of Alzheimer’s? Genetics, biology, environment,” said Dr. Mirella Diaz-Santos, UCLA assistant professor-in-residence of neurology, and the equity director for the Latino Healthy Aging Lab at UCLA. “Research indicates genes associated with women that increase longevity,” thereby increasing risk. “Some research also indicates that beta amyloid,” a protein associated with Alzheimer’s, “accumulates more in the brains of women.”
“There’s also inflammation,” she continued. “Think about all the chronic stressors that we endure, day in and day out — environmental stressors, workforce, the nuances that come with gender roles and the role of women in family … chronic stress from discrimination also plays a role in how different communities are at risk for Alzheimer’s at different levels.”
Black Americans, for instance, are twice as likely to have Alzheimer’s or another form of dementia compared to whites, while Hispanic Americans are one and a half times more likely.
“To answer these questions of why women are at higher risk, we need to be having conversations with communities suffering in silence because they’re afraid a dementia diagnosis will label them as crazy,” said Diaz-Santos. “The moment you share your story, we all have a story.”
Women as caregivers
“Even as we’ve seen Alzheimer’s rise, our community members often treat it like a mental illness,” said Anni Chung, president and CEO of Self-Help for the Elderly. “In fact, the Chinese word for Alzheimer’s is translated as ‘crazy,’ so those taking care of a loved one with dementia try to hide it, which means that they don’t seek resources or education, and the situation gets worse.”
“To address Alzheimer’s, we need to address this association of shame through educating caregivers about the disease,” she continued, adding that alongside residential and day care programs, “we help professional and family caregivers spot the symptoms and stages of Alzheimer’s to avoid frustration and shame when there’s loss of verbal communication or memory.”
“It’s usually the daughters who have to quit their jobs and move to care for their parents full-time. They often feel guilty hiring outside help, but they get burned out,” Chung said.
Over a third of U.S. dementia caregivers overall are daughters, while 19% of women Alzheimer’s caregivers have had to quit their job due to their caregiving duties.
“We run bi-weekly support groups for caregivers not only for training but to offer help, counseling, community resources, or even a lunch outing so they know they’re not alone,” she explained. “But my deepest concern is that we’re not attracting enough younger professional caregivers … We have to elevate the status of a caregiver. We ask them to care for our loved ones, but we don’t compensate them accordingly.”
Caregiving ingrained in our DNA
“Though caregivers enjoy the work, it still takes a toll,” said Mereani Ikanivere, founder of Prestige Care, an agency coordinating the work of over 100 caregivers — mostly Fijian — in Marin and Sonoma Counties. “To prep them to handle each day’s challenges means helping them recognize changing levels of ability and patterns of behavior as Alzheimer’s progresses.”
Even caregivers themselves are not exempt: “We’ve seen that those who have been caregivers for many years can show signs of cognitive decline as well,” she explained, adding that Pacific Islanders have twice as high a risk of Alzheimer’s as white Americans.
Some 65% of caregivers at Prestige Care look after someone with Alzheimer’s, Ikanivere said, “and I’ve noticed a continuous increase over the last four years.” “Caregiving is ingrained in many Fijians’ DNA” as they are often “used to taking care of loved ones since childhood.”
Luckily, the close-knit nature of many Fijiian communities also offers “great avenues to share caregiving concerns, and to avoid stress, burnout, frustration and depression as a result of long hours,” she continued. “We have sport events, reminders to take a break and visit relatives, church groups and lunch groups to talk about how we can help each other.”
“I couldn’t agree more with California’s response to Alzheimer’s,” Ikanivere added, given that in 2020, 12% of Californians 65 and over — approximately 720,000 people — had the disease. “That number is huge … As it grows, supporting the caregivers helping their loved ones is crucial.”
