Alzheimer's & Brain Awareness Month – A Time for Action
June is Alzheimer's & Brain Awareness Month, a disease that we all have had some experience with. It would be unusual for anyone not to know someone in their family or the family of a friend that has dealt with Alzheimer’s. It is a pervasive disease that impacts us much differently than the common diseases that affect us as we get old. The term, “the long goodbye” has been used to describe the slow deterioration it inflicts on its victims and their loved ones. I feel that one of the worst aspects of this slow goodbye is the fact that often, you must say goodbye to who the person was and continue to care for the person they have become. Not only does the person suffering from Alzheimer’s begin to lose some memory and cognitive skills but as they progress, they can lose their recognition of loved ones and often their personality changes.
The most personal experience I’ve had with dementia is a close friend who was inflicted with, and died from, Lewey body dementia. It is caused by the buildup of proteins like Alzheimer’s, but a different type of protein and many of the symptoms are different as well. My friend was a B-52 crew member with me when I served in the Vietnam theater. I first noticed a symptom of his disease when a group of Air Force friends got together periodically, and I golfed with him. He periodically got confused and lost track of the score which was not like him at all (I do need to report that later). As the disease progressed, he maintained his beautiful golf swing, which was a trademark of his game. However, his deterioration from the disease continually got worse for 5 years until it finally took his life. For me, having flown with him and known him for decades, the most discouraging part was when he began to lose who he was as this disease took his personality. We had to continually tell ourselves in those instances that it was the Lewey body Jim and not the Jim we knew. I constantly reminded myself that the great life he lived and the kind, positive person he was gave him the right to be respected as this terrible disease infected him. I’m sure almost all of you have a similar personal story or know of a personal story of the impact dementia has had on someone you knew or loved.
If that’s not enough it also has a huge economic impact.
This disease affects 7 million Americans and raises the cost of our country’s healthcare. It was estimated that in 2025 Alzheimer’s cost our country $781 billion. That is spread over four areas:
$232 billion — medical + long term care costs
$233 billion — value of unpaid family caregiving
$8 billion — lost earnings from caregivers leaving or reducing work
$308 billion — quality of life losses for patients and caregivers
The immediate $232 billion of direct costs is paid by:
Medicare: $106 billion
Medicaid: $58 billion
Out‑of‑pocket (families): $52 billion
Private insurance/other: $16 billion
While the bulk of the payment falls on Medicare and Medicaid, I want to focus on the $52 billion that is paid by the patient and their families. This disease has a huge physical and psychological impact on the patient and their caregivers, but this burden is only exasperated by the financial impact. This month is an ideal time to find out more about Alzheimer’s and brain health and I urge you to visit the Alzheimer’s Association’s website to do so. I want to talk some more about how we work to find an answer to this debilitating disease.
There have been a few medicines developed in the last five years that have helped slow the disease’s progress to some degree but the definitive answer to what exactly causes Alzheimer’s has not been found nor a medicine developed that effectively stops its progress. Given the number of American’s that are impacted by the disease and its cost each year you would think we would have begun an “moon shot” type of campaign to find out what causes it and how we can cure it or at least slow its progress. What worries me even more is the recent move to cut back on research grants to discover cures or medicines to slow the progress of the many diseases that affect us. The grants to colleges and other small entities are key to finding the breakthrough type of discoveries that will impact all aspects of our health. Another key to finding new cures is attracting investors that will fund the expensive process of bringing a new drug through the many trials and the final approval of the FDA. Our trajectory in this country right now is toward increasing the risk for investors which translates into less discoveries and that bothers me.
There is hope for the future. I’ve just found out about a new miniature robotic system which enables a surgeon to operate on the very small lymph nodes in the neck that help drain the harmful proteins that are believed to drive the progression of Alzheimer’s. This new system makes it possible to operate on things as small as the thickness of two sheets of paper. It has had some anecdotal success in China (they are always trying to move ahead of us in innovation), and the developers are starting the approval process in the U.S. It is new approaches, like this surgery, that might be the answer to beating Alzheimer’s.
We need to promote innovation. There are many primary elections going on in America. I encourage you to get involved. Get out and vote for candidates that want the U.S. to maintain their world leading innovation. Vote for candidates who understand what the impact on our lives would be if we beat Alzheimer’s.
Best, Thair