When I was an internal medicine resident at the University of California in Los Angeles (UCLA) back in the early ‘90s, the Neuropsychiatric Institute (or NPI) was a bit of a black box. There was a mysterious and even unknowable quality to many neurological and mental health conditions back then.
We are learning
Remarkable advances have been achieved in the fields of neuroscience and psychology over the ensuing decades, but there is still a collective sense of frustration and helplessness when it comes down to the care of an individual living with dementia <<link to article 82>>. The difference between now and then is that while we have learned so much more about brain health and disease, we have yet to gain mastery over management of treatment.
It takes the strength that comes from courage and compassion to acknowledge the reality of what is
And yet despite the grim reality of global dementia statistics, I feel extraordinarily optimistic about the future of brain health. Because I remember living through the early days of AIDs and cancer treatment, too. I have lived the experience of channeling fear and pain into the energy of connection and discovery. I have absolute faith that the scientific community will prevail.
I don’t believe that a silver bullet cure exists for dementia, but rather that we are feeling our way into a complex set of preventive practices and treatment approaches that will eventually rival the level of sophistication that we now have for both heart disease and cancer.
So what can I do while the scientists do the work of discovery? I can choose to #fightdementia in my own way. I can start by understanding the problem, which begins with our loved ones, extends to caregivers, and into the broader public health context.
I am committed to addressing the fear and stigma around aging, dementia, mental health, and caregiving. Because I have seen how being willing to share our experiences of scary conditions like cancer can help us to be more connected and supported.
Having the courage to talk about it is often more than half the battle.
Don’t get me wrong, I get that it’s easier said than done.
It took me more than eight years to face up to my APOE4 genetic risk for Alzheimer’s disease. I had this sense of dread - I didn’t want to learn more. Even as a doctor, and maybe more so because doctors are always trained to think of worse case scenarios.
I kept avoiding and looking the other way, despite the fact that I was watching the consequences of dementia unfolding before me. I was barely willing to admit to myself that I was a caregiver for my grandmother living with dementia. Resisting reality, while also carrying the invisible labor of anticipating and preparing for the next decline in her abilities.
Embracing what is
What I have learned is that keeping up that resistance requires a lot of energy - it’s like your mind is working to hold the door closed on something that’s trying to get out.
I thought I was being strong by not acknowledging any weakness, but it takes a different kind of strength to recognize the reality of what is. The kind that comes from courage, compassion and humility.
I know that science will prevail, because I’ve seen how fear and pain can transform into the energy of discovery
Acceptance has its own set of rewards. A sense of relief that I don’t have to keep fighting myself. And even a sense of pride for having been brave enough to let go, opening the door wide and stepping in to learn as much as I can about APOE4 and dementia risk.
I’ve gained a sense of agency over my destiny: I get to figure out the best ways to protect my brain based on the evidence as it accumulates and I get to share them with whomever will listen. what a tremendous gift it’s been to be able to shift my mindset, thereby changing the trajectory for my life.