Dementia is devastating. It insidiously robs us of our independence, our stories, our relationships, and our very identities. We don’t yet have a cure, nor even effective treatments for dementia. But we are learning to live with dementia, as we have learned to live with other chronic diseases like cancer and stroke.
The Brain Health movement is about slowing down the dementia epidemic by learning to take excellent care of our brains, consistently over decades. And it’s also about supporting each other with kindness and compassion as we share our stories of loved ones living with dementia. Because we can only begin to heal from this kind of devastation by creating community and taking care of each other.
One of the hallmarks of dementia is uncertainty. Memory loss typically comes on so gradually that it is barely noticeable. Our loved ones aren’t even aware that they are repeating the same question over and over again, and so of course they get confused when met with frustration. Personality changes often reflect their natural human emotions of anxiety, anger, and fear when they actually do realize what’s happening to them. Dementia undermines their ability to trust themselves and others, and as they begin to doubt us, we witness their confusion and sadness, frustration and grief.
Dementia is a terrible name - because it’s misleading
For the longest time I deflected my own dread of Alzheimer’s disease by telling myself that brain science was above my pay grade as a lowly general internal medicine doctor. I was not smart enough to know anything about brain health. I told myself that my only job was simply to refer patients to the neurologist.
But then I began to see that the specialists weren’t able to help either. After all, no drug or treatment had been forthcoming for decades. My patients and their families kept coming back to me, because even though I didn’t have any answers, I was willing to bear witness to their pain, and to help them figure out care logistics. There was nothing I could do to treat dementia, but I knew that these families needed to be taken care of nonetheless.
I learned that dementia wrecked families, and it wrecked me to see that kind of loss and devastation. The neurodegenerative fire that was causing memory loss in that patient's brain would go on to consume their brain and identity. It was a slow burning destructive flame that could cause grief, anguish, isolation, sacrifice, and financial loss. But not always. Some families were able to come together with love and resilience, gathering a village to support their beloved elder.
Even as I got to know dementia up close and personal with grandma, I felt the need to keep my distance by focusing on the caregiving role rather delving deeper into the science. A part of my brain definitely believed that I could only be safe if I stayed hidden in the darkness of ignorance. It took many years and a lot of coaching for me to admit that I didn’t want to live the rest of my life in fear and denial.
But as I began educating myself about dementia, I found reason to hope, and I learned that I wasn’t alone in being afraid of dementia. I learned that the word dementia is often a conversation stopper. And for good reason. Dementia is not a diagnosis per se, it’s an umbrella term we use for a group of conditions that share some common characteristics, like memory loss and impaired intellectual function. And dementia is a terrible name - because it’s misleading. The word dementia makes it sound like you are demented, or crazy.
None of the other more specific diagnostic names are any more descriptive or helpful - like Alzheimer’s or Lewy body disease, vascular or frontotemporal dementia. If possible, the Chinese translation chi1 dai1 zheng4 is even more confusing and terrifying: meaning that dementia is a disease that results in imbecility or stupidity.
The truth is that brain aging diseases are uniformly scary because the underlying neurodegenerative processes are progressive and hard to treat. So maybe their names aren’t so important. But I’d argue that a more descriptive term like brain inflammation or cerebritis might give us more of a sense of control, because we inherently trust that there are ways for us t0 reduce inflammation. Early stage memory loss, or mild cognitive impairment (MCI), can be improved through exercise, better sleep quality, and reduced alcohol,
I bore witness to their pain, and helped them figure out care logistics
Many experts believe that dementia is hard to treat because we are seeing the very late stage of brain disease. To use an analogy, we felt similarly helpless when confronted with stage 4 cancer back in the 1960s. And now we know that cancer is not one disease but hundreds of different diseases, with different causes and treatment targets. We have discovered that earlier detection of cancer allows for better chances for life saving interventions. Science has helped us to identify precancers, and even to protect against some types of cancers through vaccination.
Brain aging conditions are ripe for these kinds of discoveries, as more resources have gone into learning about dementia diagnosis and treatment.. We already know that there is a preclinical stage of dementia that lasts for up to 2-3 decades before onset of symptoms. We can prevent the progression of disease for over 30% of cases, through brain healthy lifestyle interventions.
Lisa Genova is a brain scientist who also writes fiction novels about those living with brian disease. I watched the film based on her book “Still Alice,” with horror, dread, and yet fascination - I couldn’t tear myself away. The beautiful and brilliant Julianne Moore acts out the story of this Columbia professor who develops early onset Alzheimer’s disease (AD).
I’m taking action every day to fight dementia, for myself and for my family
Alice set up systems for herself to cope with memory loss. She even decided early on that she must end her own life in order not to be a burden to her family. She stashed away a bottle of sleeping pills and recorded a video for her future self, so she would know exactly how to commit suicide using those pills.
Future Alice has completely forgotten about the video and pills, when she happens upon a computer message to herself and begins to watch the video. Her disease is far enough along by then that she struggles to follow the video instructions. She has to go back to watch it several times.
I remember desperately wanting Alice to succeed, and agonizing over this sequence. I identified so completely with Alice that I believed my husband would abandon me, and that I hated the idea of leaving my adult children to sacrifice their lives to care for me.
Lisa Genova’s most recent nonfiction book Remembering, is an excellent resource for understanding how to work to improve our memories, what lifestyle measures prevent brain aging conditions, and how to support those living with disease.
My thoughts and feelings about dementia have been emerging slowly over the course of months and even years. I was excited to see how strong the science was behind dementia prevention, but I had not been aware that I had so many limiting beliefs about myself. Beliefs like:
Who am I to teach about dementia prevention?
I’m no expert when it comes to brain science.
How can I be sure these practices will even work for myself?
What if I’m destined to be like Alice no matter what I do?
It’s been quite the process to work through my fears, but doing so has actually affirmed that this is exactly what I’m meant to do with my life. My journey through the horror, terror, agony, and devastation are what allow me to share my authentic truth. They are not necessarily what everyone will experience, but they are absolutely why I can be unafraid to go there with others.
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My new empowering beliefs are:
Who better to show others to work through their limiting beliefs as I have done?
I don’t need to be an expert in neuroscience - I’ve already been teaching healthy lifestyle choices as an integrative medicine specialist and wellness coach.
I’m taking action every day to fight dementia, rather than passively waiting to see what happens by default.
Still Alice was a movie about a very rare form of early onset AD intended to highlight the drama/worse-case scenario story. As a doctor I see these kinds of tearjerker movies all the time about cancer or whatever other conditions.
There’s no way I’ll end up like Alice, but I’m grateful for her story, because she’ll help me and many other women avoid her destiny.
My passion fuels my resourcefulness, creativity and courage to figure this out for myself and others. The fears still sometimes show up, but I’ve learned to embrace them and let them be there. Because they are my best teachers when I know how to convert their energy into fuel for the Brain Health movement.
Still Alice (2014) film based on Lisa Genova’s 2007 novel. Stars Julianne Moore, Kristen Stewart, Alec Baldwin.