I have some strongly held opinions about this brain disease. I am aware that we haven’t made much progress figuring out what to do about Alzheimer’s even though we’ve been at it for over 100 years.
I also have some strongly held opinions about how collecting money for research has become a fund-raising behemoth. While I don’t have access to the actual numbers, the Alzheimer’s Association charity gets a favorable rating for transparency, raising over $403 million dollars in 2020.
I have some strongly held opinions about how pharmaceutical companies have convinced us that there is a magic pill in the offing – in spite of evidence to the contrary.
And, I have some strongly held opinions about how we, as a society, have utterly failed to prepare and care for individuals and families whose loved ones are living and dying with this condition.
The Name that Strikes Fear in our Hearts
If Dr. Alzheimer could weigh in, I suspect he might regret having his name attached to this neurodegenerative disorder. Often confused with the all-inclusive grouping of “dementia,” just using the word, “Alzheimer’s,” can quickly turn a room of highly functioning older adults into quivering mounds of Jello.
Have trouble finding a word? Forget where you put your keys? Get distracted and end up leaving something in the oven too long, and your mind takes but a nano-second to diagnose yourself with dementia and see yourself in a nursing home, drooling and incontinent, sitting alone and forgotten in a wheelchair in the hallway.
Just What Is Alzheimer’s?
You would think this would be an easy question to answer. But it is not. Unlike many other diseases, most of what we know about Alzheimer’s comes from looking at the brains of dead people.
Dr. A became famous for using cutting edge technology in his lab in 1904 to explore the complexity of the human brain. He discovered a way to use dye to color thin slices of brain tissue and then looked at the results using the most advanced tool of his era: a microscope.
Those slices of brain tissue came from a patient, Auguste D., who, before she died, was observed to have sleep problems, memory problems, severe behavioral disturbances, and paranoia, all of which became increasingly more severe during the last five years of her life. Her autopsy revealed what Alzheimer identified as “plaques and tangles”, which he blamed for her collection of problems. This observation has focused research on this aspect of the disease from 1906 to today.
While researchers have gathered more information about the human brain since the early 1900s, we still can’t say whether or not plaques and tangles are at the heart of what causes Alzheimer’s disease.
What We Know About Alzheimer’s Today
You would think by now we would have figured this thing out! Turns out, we don’t know much more about this disease today than when Alzheimer and his buddy, Emil Kraeplin, first observed the cluster of behaviors associated with it back in the early 1900s.
We have mapped the brain’s exterior, named its lobes, investigated and pinpointed various areas of specialization, but have yet to truly grasp the totality of its remarkably complex and adaptive functioning.
Even with our modern technology that can “see” the brain working in real time and DNA sequencing, the truth is our brains are so complex that scientists are only just beginning to truly understand how it functions.
Alzheimer’s, along with most brain disorders, remains elusive in being fully understood. But I imagine almost every one reading this has either known somebody who was diagnosed with Alzheimer’s, or knows someone who is caring for, lives with, or is related to someone with this or another dementia.
The Challenges We Face with Dementia
The first challenge we face is setting aside our Don Quixote quest to find a cure, and sitting down and figuring out how to shore up our health care system. In spite of what the pharmaceutical companies will tell you, we are no closer to finding a pill to slow or cure this disease than back in Dr. Alzheimer’s day.
We do need money for research. Sadly, fundraising for diseases has become a niche market of its own. Whether it is a child asking for help or lots of folks in purple walking or running for a cause, the fact that this essential research is reliant on nickels and dimes raised by individuals and non-profits should shame each and every one of us! Where, in God’s name, are our priorities? (That was not rhetorical!)
The Path Forward
We need to provide essential services to individuals, family members, and care providers in all of our communities. This means creating safe housing, developing pathways for the recruiting, training and employment of caregivers, and establishing trust funds to pay for care.
These elements are part and parcel of every governmental budget and do not require any special adaptation or study. It does require people nagging city, county, state, and federal elected officials and demanding that funds be set aside for these services. It requires that these services become as important as whatever else is on the agenda.
Alzheimer’s is not going to be cured with a pill or change in diet. Research must continue and be supported. Incentives, however, should be clearly benchmarked on those interventions that actually reduce the burden of suffering and provide the greatest relief to the individual and those caring for that individual; not on which molecules can be patented by a pharma giant.
What Lies Ahead
The unassailable truth is that many Baby Boomers are going to experience declines in their brain functioning. Some will be able to be cared for by partners and/or family members, and may live out their days in their own homes.
Others, those without extended family or who are solo agers, but who have resources, may find themselves living in assisted living and/or memory care facilities. Beds, however, are going to be challenging to find, since there are few facilities, and they are filling fast with bunches of Boomers who are living longer.
Still others may find themselves unhoused and without consistent, reliable care. Sadly, they will only occasionally find shelter and food, and many will succumb to violence or diseases other than dementia, thereby ending their suffering.
What We Don’t Want to Face
Because of our societal ageism and denial, we are unprepared for the inevitable consequences of poor planning or no planning at all. This holds true at the individual level, at the governmental level, and at the institutional level. And it is not limited to the United States.
Too few Boomers have sufficient funds set aside to pay for their care, including housing, health, and caregiving. Too few communities have policies and regulations in place that include intentional flexibility to adapt housing and health care to meet the needs of people who cannot care for themselves. And too few businesses, systems of care, and funding sources have thought through what it will mean to extend their ambit across the lifespan, which now is regularly going past 80+.
Not Everybody Will Get Alzheimer’s
Not all of us will experience cognitive decline. There are things that are effective in preserving and extending your quality of life, even with mild cognitive impairment. You already know what they are! Exercise, eat a well-balanced diet, stay connected to positive things and people in your life.
If you are diagnosed with a dementia, recruit a team of folks who will make sure you are loved, protected, and who will have your best interest in mind. Get connected to support services. Don’t give up.
There Is No Cure for Dementia
There is no cure for dementia. If you get it, you will experience cognitive decline. That isn’t what any of us want to hear. But it is the reality of the disease.
As of today, you can’t prevent it. So, save your money and put it aside for housing and paying caregivers instead of popping pills or worrying about it. Go for a walk. Eat some vegetables! Get or give a hug!
In Spite of My Doom-Saying
June is Alzheimer’s and Brain Awareness Month. In spite of all my doom-saying, I do hold out hope that there is a way to slow or stop the decline. It really is up you each and every one of us to take steps to see that changes are made to help all of us. Advocate in your community in any and every way you can to make sure there will be care for those with dementia.
3 responses to “June is Alzheimer’s Awareness Month”
Mary, thank you for a superb overview of this particular gigantic “elephant in the living room” — not just for some unfortunate individuals, but also for society’s future. Ah well! I do wish to add another dimension to your post.
Conventionally-oriented western medicine (“the body as a machine”), continues in all arenas to conveniently (mostly) ignore psychological inputs to that catch-all “condition” called “dementia.” Most physicians today STILL only grudgingly “admit” that there “might be” “some” connection between the mind (our lifetime-developing personality with all its inputs since childhood) and the “body.” Thus the hubris of 19th century mechanistic “science” STILL holds sway over most people’s thinking about “mind/body,” and still argue about: is there “some connection” there? Wow.
My point? I have long been convinced that MANY elder “diseases” and “conditions” (both of body and brain) stem from incredibly widespread childhood adversity and its emotional wounds — whenever not addressed and exhaustively avoided and buried, as is the case with most people, who within a society that demands conformity and productivity — over self-actualization.
As we age we of course DO lose constitutional and cognitive ENERGY, and thus gradually cease being able to keep COVERING UP our personal (childhood) “elephants in the living room.” I am convinced that those come to the fore (in only SOME elders) in the form of physical symptoms and/or shocking mental decline, which mechanistic “medicine” loves to (mechanistically) catalogue and classify, rather than actually deal with. So here is a relevant psychological trope: “If we don’t work on our inner damage, we TURN INTO IT.” Food for thought, for us all.
I was a visiting professor in Cuba recently and gave an update on Dementia at the main hospital in Havana and 5 regional hospitals. My main message was on prevention. Besides what you’ve mentioned, controlling HBP, and lifestyle changes that reduces the risk of obesity will reduce the risks of vascular brain injury and vascular dementia, which is the most common contributor to mixed dementia. I agree that the amyloid and tau hypothesis reflect our lack of understanding about why these proteins accumulate and why some are more predisposed to this occurring,
A 64 yr old friend has just been diagnosed with Alzheimer’s. She has asked that we be there for her partner, fearing the toll it would take. My 86 yr old cousin suffers from confusion and mental decline and resists help. I see the “elephant in the room” and it scares me. We need to figure out heath care and wellness care for all. It is not enough to throw a pill at it (as one of my own doctors recently said). It is, as you said, both more complicated—and more simple—than that. We live in a society that doesn’t value the quality of life but does value the maximization of profits. (I just read that most hospice groups are now For Profits!!)