I have been writing about dementia prevention for over a year by now, and this year I’ve made a commitment to myself to uplevel in terms of advocacy. Because dementia wrecks me. And it’s wrecking other caregivers and their families.
We are all learning to cope in our own ways, but aren’t talking enough about what can be done to prevent the wreckage in the first place. While it’s never too late to begin taking care of our brains, there’s no question that the sooner we begin, the better our odds of beating dementia.
And while knowledge is important to effect empowerment, I’ve learned that we also need community. As humans, we are moved by stories and inspired by fellowship. But it’s not easy to speak out loud about our fears of aging, mental health, or brain health. Because our individual shame and fear have become magnified into social stigma and taboo.
Dementia wrecks me. And it’s wrecking other families too
So my work is to begin creating that safe space. A community where we can share our truths about the experience of being caregivers. Where we won’t be judged for saying how exhausted we are, how heartbroken we feel, and how frustrating it is to be with our loved ones who are living with dementia.
It’s hard to talk about
Even though my message is about prevention and hope, it carries a warning. I’m realizing how hard it is for me to talk openly about dementia. because I know how incredibly scary it is, and I don’t want to scare people. I know what it’s like to be the bearer of scary news, the kind of news that’s unpopular, that no one wants to hear. Like when I was warning women to start their family planning as early as possible.
When we think about women’s health and preventive medicine, pap smears and mammograms spring immediately to mind. There was a time when women’s cancers were also a taboo topic, but as a society we have finally made peace with messaging about cancer prevention.
Even though my message is about prevention and hope, it carries a warning
The journey through infertility treatments can also be incredibly scary and painful, but it’s not as easy to spread the message of prevention. Fertility treatments have become more and more commonplace, and increasingly successful over the years. But they are still mind-bogglingly expensive. And beyond the monetary cost, women bear immense emotional and physical costs, mostly alone in their shame and fear.
Back in the 1990s, my University of Washington faculty colleague and fertility specialist Dr Michael Soules was lambasted by feminist groups when he publicly cautioned women not to delay childbearing, because it would get exponentially harder to get pregnant naturally after age 30. It was a message that women didn’t want to hear.
We wanted to believe that we didn’t have to make difficult choices about juggling childbearing with careers. We wanted to believe that technology could save us, and that we could extend our fertility well into our forties. And yet three decades later, the basic biology of women’s reproductive systems haven’t changed much.
We wanted to believe that we didn’t have to make difficult choices about juggling childbearing with careers. We wanted to believe that technology could save us, and that we could extend our fertility well into our forties. And yet three decades later, the basic biology of women’s reproductive systems haven’t changed much.
Yes, your chances of getting pregnant are greater, but the path of fertility treatment is still incredibly painful and lonely, and can be heartbreaking.
I learned from Michael that the media can potentially take your words that come from the best of intentions and twist them so out of context that they are barely recognizable to you. But his experience did not deter me from having family planning conversations with every woman I saw of childbearing age, every year with her pap test.
Difficult choices
Because I had seen enough of the pain and misery that fertility issues can cause, even within my own family, and I had promised myself that I would do what I could to prevent that. I would gently broach the conversation in a nonjudgmental way.
“Have you given any thought to family planning? Would you for sure want your own children, or would you be open to adoption? What about your partner? Our biology is such that our fertility drops exponentially after the age of 30, and while technology exists, we tend not to hear about the failures. Just think about it. We can talk more when you’re ready.”
At the time, I’m sure many of my patients thought I was being incredibly nosey and intrusive. But there were enough women who would come back to ask for more information. And a few would show up months later, proudly showing off their bumps or bundles of joy, with tears of gratitude for my nudge. For being brave enough to break the social stigma and silence around infertility, and for giving them permission to listen to their own fears, as well as their heart’s desire.
A clear analogy
You may ask what does all this have to do with dementia? For me, the analogy is very clear. Choosing childbearing as early as possible sometimes entails making difficult choices about how to invest in creating your future life, even as you are feeling overwhelmed by early career demands.
Brain health is the most important determinant of the quality of my life
I seldom hear regrets from those who intentionally planned ahead to make room in their lives by prioritizing children. But those who allowed family planning to be deferred - to happen by default - are often full of regret.
When I think about creating my own future life, I absolutely choose to make room by prioritizing brain health. I know that excellent brain health is the most important determinant of the quality of my life for the next five decades, so I’m intentionally planning ahead. I intend to do everything possible to be healthy of mind and body at my 100th birthday party.
You may be so used to thinking of children as representing new life that it’s hard to make the shift to thinking about the rest of your own life as being a new life. But what if it was? Research shows that purpose in life is key to cognitive health, even in those whose brains have extensive pathological changes associated with Alzheimer’s disease. What this means is that we can choose to create our own renaissance life at whatever age.
I don’t plan to defer brain care, nor to allow whatever to happen to my brain by default. Because I’ve seen the devastation and misery caused by dementia, for the patient as well as for their caregivers and families. I don’t intend to allow that kind of devastation to happen in my family if I can possibly avoid it. I can and will act now, to build consistent physical self care practices, and to master my mind.
What’s Next?
If you are interested in joining our community of midlife high-achieving women caregivers to #fightdementia and take care of your brain health, I would encourage you to start by taking the Brain Health Index Quiz. Learn more about your Brain Health Index Score HERE.
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Brain Health Index Quiz
