Updated: Aug 21, 2021
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.
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: