Shame & Dementia

Seek: The End of Alzheimer's by Dale Bredesen, MD

Disclaimer: This post contains information and opinions from someone with no background in medicine or science (proceed with extreme caution). Always consult with your own trusted medical and legal practitioners before making any decisions about diagnosis, treatment, estate planning, or outcomes for dementia or any other condition. It takes courage to change any stigma and I'd like to start by acknowledging University of Houston Professor Brené Brown for her research on the connections between shame and vulnerability as well as beloved actor Michael J. Fox for sharing his personal struggles with Parkinson's.

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If René Descartes had described Alzheimer's Disease, then he may have said: "I forgot; therefore, I am not."

After all, who are we without his actual quote: "I think; therefore, I am"; and, if we can no longer think, then this must mean that we no longer be.

The reason? Shame.

It's why someone whom I had known put "never a smoker" into own obituary before dying from lung cancer. Dementia taught me to stop all disease shame after witnessing five people, including my dad, suffer and die after forgetting all they knew. Have been thinking of late about our experience with dad's dementia diagnosis. He had denied there was any problem but we all knew.

Take a look at this checklist from the Alzheimer's Association when trying to understand dementia symptoms. Will never forget the immense injustice I had felt when trying to help dad without his consent and then seeing this checklist even though his behavior did not fit any pattern we had seen before:

• Where was the checklist on what to do when he starts drinking heavy each night because he knows that he's losing his mind?
  

• Where was the checklist to know the date when he will forget how to read music?
  

• Where was the checklist to help talk with an acquaintance whom you knew that was having possible memory lapses because you have seen the signs five times?
  

• Where was the checklist when you were wrong in your observations?
  

The responses that must precede all these questions is empathy.

Diseases just happen to everyone if we live long enough (or never long enough). There is no justice but prevention is key.

In the United States, we have shame about dementia because we know that our system for care is broken but we feel powerless to change and the collective struggle with COVID-19 has further exposed these inequities without any consistent and reliable social-safety net.

How do we overcome dementia shame? Recognize that time spent with shame is time wasted in asking for help and pursuing treatment. If you haven't already, read The End of Alzheimer's by Dale Bredesen, MD. He has written the treatment guide for how to overcome early dementia systems before brain damage is too extensive. You can even pursue preemptive dementia treatment before any symptoms start!

With this advice, a guide and caution that plan to continue throughout future posts:

If you ever want to know how to avoid mistakes when thinking about life and science then please start with this Stanford lecture about Human Behavioral Biology by Robert Sapolsky. In brief, he cautions us to avoid categorical thinking even though our brains will do this to help us organize our thoughts when we're not fleeing predators.

The danger with creating these brain categories is that we risk missing the big-picture connections which has lead to deadly and devastating consequences even by reputable scientists including a Nobel Prize winner!

With regard to dementia prevention, in my mind, the categorical thinking based upon Dr. Bredesen's book are: food, supplements, DNA, and exercise. In own life, am trying this prevention combo because (at age 47) am not sure how much time will have to wait for long-term scientific testing and valid outcomes from Dr. Bredesen's research.

A few months after dad's death, we were at Costco shopping and my loving hubby noticed Dr. Bredesen's book. Turns out that there are medical professionals in our hometown and around the world being taught the Bredesen Protocol (also called ReCODE) and patient outcomes show promise that dementia is not inevitable if treatment is given in time!

Dad (right) with his parents, Louis Sr. and Adele in East St. Louis, IL (c. 1957)

In our family, shame and silence were a deadly dementia combo.

With ongoing gratitude to Brené Brown for her research on the connections between shame and vulnerability, am recognizing the hopelessness that dad would have felt about his own dementia which had prevented his earlier diagnosis and possible treatment. My hunch is that these feelings were rooted in his own shame about what had seemed like pointless discussions since we didn't know about Dr. Bredesen's treatments.

In dad's family, we thankfully learned from his first cousin (late in dad's disease) that his Dad may have died from Parkinson's (with gratitude to Michael J. Fox for showing us how to release fear about his own diagnosis) rather than "hardening of the arteries" as Dad had always been told.

My dad's suffering taught mom and I not to wait to seek help but he could not recognize his own denial to seek treatment even though we all had seen the dementia, and we think he did, too, since its symptoms had begun in his mid-60s with his death at age 82. During this time, his solution was to self medicate with excess alcohol and I do not blame him since he had also been a caregiver for Mom's parents who had both died from Alzheimer's (with their collective results confirmed by autopsy which is the only way to be certain). In dad's mind, there was nothing that could be done except to drink and to appease the dementia monster already devouring his brain.

We were wrong. Turns out that there was help available to treat dad's dementia but we didn't know. We could have helped him and maybe have reversed all symptoms had we known to try Bredesen's method.

Never again must anyone accept dementia as certain.

In the meantime, am trying a shorter-term approach (now with healthier skepticism and mindfulness from Dr. Sapolsky about categorical pitfalls) as well as from research by Dr. Bredesen and his colleagues. In brief, they have been researching dementia prevention for more than 20 years. What they are learning is that dementia is treatable through diet, tailored supplements (based upon DNA results), and exercise (yep, the categories, so proceed with caution). The reason I believe this may work is that when I follow the advice in his book along with support from my medical professional who follows this protocol then I do feel mentally sharper (sure, this could be in part the Placebo Effect), but hey, if this keeps me from getting dementia someday then am willing to experiment!