Women affected by Alzheimer’s
Genetics, biology, and environment disproportionately affect women with Alzheimer’s disease. Two-thirds of people diagnosed with Alzheimer’s nationwide are women while 60% of those caring for an Alzheimer’s patient are also women.
This is a disease that disproportionately affects women but why is that happening and what are we doing about it?
California will be Alzheimer’s epicenter
California is home to more adults aged 65 and older than any other state, said Dr. Wynnelena C. Canio, Chief of Geriatrics at Kaiser Permanente in San Rafael and Petaluma at a May 9 Ethnic Media Services briefing on the Toll of Alzheimer’s on Women.
Alzheimer’s disease is the second leading cause of death in California according to 2024 data from the California Department of Public Health. While the state’s population is projected to grow 16% by 2040, the number of people living with Alzheimer’s is projected to increase by 127%, not including unreported cases.
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.
A new campaign
Dementia is an overarching term that refers to a range of symptoms affecting cognitive abilities. Alzheimer’s is the most common cause of dementia characterized by progressive memory loss and cognitive decline.
But Dr. Canio warned that this population is becoming more diverse and these demographic trends create an urgency to prepare for and respond to the needs of all individuals with dementia and their care partners.
The California Department of Health has tackled this head-on by creating a campaign, the first of its kind in the country, which aims to raise public awareness about Alzheimer’s which will affect California significantly in the next few decades.
According to Dr. Canio, an appointee to the task force, a recommendation from California’s Master Plan for Aging, is to create an Alzheimer’s disease public awareness campaign that is multilingual, multicultural, and intergenerational, highlighting the need for education and preparation.
“We can build understanding around the relevant risk factors for women, reduce the negative impacts of stigma, and work towards the goal of supporting women and families to improve their brain health,” said Dr. Canio.
Women at the center of Alzheimer’s
For Dr. Canio, this disease is personal. She helped look after her grandmother along with her family which helped inform her career choice. She recalled an incident from when she was once helping to bathe her grandmother who cried ‘Why are you helping me? I bathe you” to which Dr. Canio responded, “You’re right, you did. So now it’s my turn.”
Building awareness about Alzheimer’s will benefit women, who at age 45, face a one in five-lifetime risk for the disease, compared to one in 10 for men.
“Tragically, fear and stigma often prevent many from seeking information, assistance, or a diagnosis until the disease has progressed, which is why it’s so critical that we educate or communicate with our communities about the prevalence of this disease,” warned Dr. Canio.
Early detection is important as it opens doors to understanding the options of important legal rights and health care benefits, Dr. Canio advised. “It’s also important to note that there are other possible causes of cognitive changes. It doesn’t have to be Alzheimer’s.”
Risk Factors for Alzheimer’s
“Genetics, biology, environment” said Dr. Mirella Diaz-Santos,of the risk factors for Alzheimer’s. She is an Assistant Professor-in-residence of Neurology, and the equity director for the Latino Healthy Aging Lab at UCLA.
Research is uncovering some genes associated with women that increase their longevity. The primary risk factor for Alzheimer’s is age and women live longer but that does not begin to explain the higher propensity for the disease.
“We have many factors that can increase our risk through our lives”, explains Dr. Diaz-Santos. There’s some research indicating that there’s some interaction between biology and neural pathology where beta amyloid, a protein associated with Alzheimer’s, accumulates more in the brains of women.
An UCLA research found that people with Alzheimer’s had elevated concentrations of synaptic soluble amyloid-beta oligomers that are toxic to brain cells. This makes it harder for the brain to form new memories and recall old ones.
Chronic stressors
“We also want to think about inflammation. Think about all the chronic stressors that we endure day in and day out through our lives” continues Dr. Diaz-Santos. “Environmental stressors, workforce stressors, the nuances that come with gender roles and the role of women in the family.” The role of trauma cannot be ignored either.
Dr. Canio also points to research that shows “A few years ago, women did not attain a high educational level and now that they are living longer, we’re seeing the effects of that and we know that the more we use our brain the more we have that reserve when we get older.”
“Finally, researchers at the NIH level are putting money and understanding the role of chronic stress throughout our life – trauma, discrimination, racism, and how those factors impact different communities at different levels and how that actually also increases our risk,” says Dr. Diaz-Santos.
It’s not our fault!
I wanted to convey that it is not our fault, emphasizes Dr. Diaz-Santos. “We all have a story.. and we’re suffering in silence because we are afraid that we will be labeled with – you’re going crazy.”
‘It’s really important to all of us to learn about how to keep our brain healthy and that is exercising, having aerobic exercise, 30 min, 5 days a week.”
She continues that “eating healthy, what’s good for your heart is good for the brain. And sometimes that’s hard for some folks, depending on their culture and how the food that’s prepared for them.” Dehydration is another key factor as well, but she is optimistic that we can reverse those causes and hopefully reduce our collective risk by having these conversations.
Caregivers are women
While the common concern is the increasing number of patients with Alzheimer’s struggling with social isolation, misdiagnosis, and stigma, two-thirds of whom are women, their caregivers need consideration as well.
The state reports that just in California, 1,373,000 family caregivers bear the burden of the disease providing 1.8 billion hours of unpaid care which amounts to a whopping $44.2 billion is the value of the unpaid care. Most of these caregivers are women – wives or daughters, making up 60% of the caregivers. They also face the untold distress of physical, mental health, and career consequences of providing this demanding care.
The stigma of Alzheimer’s
For over 40 years, Anni Chung, president and CEO of Self-Help for the Elderly has seen a rise in awareness about this disease among the Chinese American community. “But sometimes, our family members and even our community members mistake Alzheimer’s and dementia and call it a mental illness.”
In fact, adds Chung, the Chinese word for Alzheimer’s translates as ‘stupid and silly’, a derogatory and demeaning term that forces families taking care of Alzheimer’s patients to hide it, “which of course means that they don’t seek medical help and the situation only gets worse.”
“We’ve seen a lot of families taking care of Alzheimer’s patients and it usually really are the daughters who have to quit their jobs in order to take care of their loved ones on a full-time basis” explains Chung whose team helps families to understand how to take care of their loved ones without this shame.
It requires 3 shifts of caregivers to take care of one family, Chung added, referring to the need for incontinent care, cooking, feeding, and grooming. “You can have a professional caregiver if you can afford it.”
But the market rate of $10,000 to $12,000 a month to take care of an Alzheimer’s patient is unaffordable to most, Chung said.
Caregiver burnout
Family members who take care of their loved ones for a long time get burned out, said Chung, who helps exhausted caregivers with training and social events. “We will take the whole group of family caregivers to an outing, … tea or lunch or a picnic … take them out of their intensive caregiving responsibilities and help revive the energy and the dedication.”
Then the cultural mores kick in, says Chung “as children we are, we feel very guilty if we don’t do all of the personal care ourselves. We feel that we shouldn’t be hiring outside people to take care of our parents and grandparents. But then you get burned out. So I think that you have to balance and self-care is very, very important.
Self-Help for the Elderly has built 24-hour, 7-day residential care facilities specifically to take care of patients with Alzheimer’s and dementia but capacity is an issue.
Caregiver careers
Caregiving is ingrained in our DNA, says Mereni Ikanivere, owner of Prestige In Home Care serving the Greater Marin and Sonoma counties.
Due to the multi-generational and communal way of living, Fijians are used to taking care of their elderly and loved ones since childhood, explains Ikanivere.
Medical diagnosis is critical, because “Alzheimer’s typically progresses slowly in 3 stages – mild, moderate and severe in a medical context. Knowing this stage is critical, and it allows me to prep my caregiver on how to handle the clients” explains Ikanivere.
“Each day brings new challenges such as the care and the scope with changing levels of ability and new patterns of behavior.”
To deal with the difficult work, Ikanivere continuously reminds her caregivers “to take a break, go on vacation, visit relatives, attend sport or church events and just to have fun.”
My fear is we’re not attracting enough younger professionals to join the Home Health field, explained Chung. Younger people are not attracted to this career because “we ask them to take care of our loved ones, but we don’t compensate them properly.”
Image by Gerd Altmann from Pixabay