“I want to go home!”
“Dad, we are home.”
“I want to go home. I want to go home.”
Being the caregiver for a parent or relative with Alzheimer’s disease (AD) is an emotional rollercoaster with more downs than ups.
There’s the sadness that comes with watching the smart and funny person you grew up idolizing struggle to make a sandwich. There’s the frustration of never getting a break and knowing it’s only going to get worse. There’s the guilt of wanting to just put them into a home and take a vacation.
And there’s the fear that your children will one day need to provide the same service for you.
For many women, a parent’s AD diagnosis coincides with the onset of menopause, adding another layer of stress and concern to an already emotional situation.
And menopause itself can be a risk for the disease (more on that below in the Alzheimer's-estrogen connection).
If you have a loved one among the 5.8 million Americans living with Alzheimer’s disease, you know that the disease is devastating for both patient and family. By 2050, the number of people with AD is expected to more than double.
AD is a progressive, degenerative brain disease that affects memory, thinking, and the ability to perform basic tasks. Over time, plaques, protein build-up, and inflammation in the AD patient’s brain destroy the way the signals (called neurotransmitters) move across neurons. Neurons are the cells responsible for memories, thoughts, and emotions.
There are two forms of AD: early-onset, where symptoms first appear in patients’ 30s to 60s, and the far more common late-onset variety, with symptoms first manifesting in people in their 60s and older.
AD has three stages. In the early (mild) stage, patients display some memory challenges. They may forget something that they just read, misplace an important document, or struggle to remember someone’s name, but more or less can function independently.
In the moderate AD stage, the longest of the three, patients begin to forget more and more significant events in their lives; how to do everyday tasks, where they went to high school, where they are, or what day it is. And, for the most part, can still carry on conversations. Their personality and behavior change: they grow moody, suspicious, and easily confused, and may act in unexpected ways. They often wander and become lost.
In the final stage of AD, patients need around-the-clock care as they lose all understanding of their surroundings, ability to communicate, and, eventually, control over physical functions like walking, sitting, or swallowing, ultimately leading to death.
While the terms "Alzheimer’s" and "dementia" are often used synonymously (and AD is the most common form of dementia), dementia covers any irreversible decline in memory or cognitive function. Dementia is diagnosed after a patient demonstrates two or more areas of cognitive impairment, including disorientation, disorganization, language decline, and memory loss.
(While we’re on the topic, "senile" is often used pejoratively to describe cognitive decline but is not a medical diagnosis.)
Historically there has been no way to diagnose AD as a patient’s specific form of dementia, beyond a post-mortem autopsy, but amyloid PET scans now offer promise in this area.
Age is the primary risk factor for Alzheimer’s, but women develop the disease at twice the rate of men, and it’s not because we live longer (even though we do). Black women have an even higher incidence: twice the rate of white women.
Neuroscientist Dr. Lisa Mosconi (on our advisory board) wanted to know why.
Dr. Mosconi is the director of the Weill Cornell Women’s Brain Initiative (WBI) and has devoted her career to studying AD after watching women in her family suffer from the disease.
By scanning women’s brains, she’s found a possible connection between the onset of Alzheimer’s and the onset of menopause. Our own CEO Jill Angelo participated in the study.
Estrogen protects the body against aging and seems to protect the brain against the plaques that lead to Alzheimer’s.
Dr. Mosconi’s brain scans show Alzheimer’s-related changes in women’s brains may happen between ages 40 and 65: earlier than in men, before symptoms become apparent, and right around the start of menopause.
As Dr. Mosconi told us in a 2018 interview, “In straight talk: menopause causes metabolic changes in the brain that seem to increase the risk of Alzheimer’s disease.”
So, if you feel like your brain is changing as you go through menopause, it’s not all in your head: it really is.
But don’t panic: plaques in your brain don’t mean you will definitely get AD, but it does mean that there is something there that may cause it.
Early-onset AD is genetic, but only 1% of AD cases are directly linked to genes. Late-onset AD is caused by some combination of genes, environment, lifestyle, and medical factors. In fact, one out of every three cases of AD could be prevented by addressing non-genetic factors.
While not an exhaustive list, the following are some of the biggest ways to reduce your risk.
Estrogen replacement therapy may help protect against AD, but also may be linked to reproductive cancers. Dr. Mosconi concludes that more research needs to be done into the source of the hormones, the correct dosage, and breast and ovarian cancer risk factors for each individual entering menopause. Read: our stance on HRT.
Taking care of a loved one with a life-altering disease is stressful, no way around it. Add hot flashes, fluctuating hormones, and a changing body to the mix and… yowza.
Make caregiving easier on yourself. It’s never going to be easy, but there is hope. Learn how to prepare your body for the physical requirements of caring for another person with limited control of their own movements. Figure out how the person you are caring for can help you. They may not be able to go to the supermarket, but can they order groceries online?
Read: Helping caregivers take care of themselves.
Create a welcoming environment for your loved one when they move into your home. The more comfortable they feel, the better you will feel. Read: Preparing your home for a parent with dementia.
Practice self-care. You need to take care of yourself as well as your loved one. Talk to your doctor or a counselor, find a community of women in similar situations. Don’t be afraid to ask for help. In the words of Twin Peaks’ Agent Dale Cooper, “Every day, once a day, give yourself a present:” do one small thing for yourself the first thing in the morning. Read: Self-care for caregivers in menopause.
Burnout is real, but you’re not in this alone. We’d love to hear more about how you and your family are managing, so please feel free to join and share with the Gennev community.
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