Dementia Is A Hard Way To Die
(10 minute read)
It’s hard to watch our childhood heroes go down.
Seeing our favorite actors, artists, creators, and athletes age, get sick and die brings us one step closer to the realization that one day soon we’ll have to contend with some very real health challenges ourselves.
It’s one thing to hear about someone dying of a heart attack or after a grueling battle with cancer. Dementia, on the other hand, is a uniquely hard, long, and painful way to go.
Not just for us but for everyone around us.
I’m writing this article, not because I have nothing better to be doing on a beautiful Sunday morning, but because I feel this is a discussion most men need to hear.
Hopefully by the end of this article you’ll understand why.
The Adolescent Myth Of Immortality
The experiences of daily aches and pains, cholesterol checks, colonoscopies, prostate exams, and all the other joys of aging just remind us we’re no longer indestructible.
Many of you are already aware of how important it is to take care of your heart, blood pressure, and blood sugar. Some of you are even taking steps to improve your cardiovascular, metabolic, and musculoskeletal health already.
But, the piece of the health puzzle I think is missing for most men is a focus on brain health. It’s my opinion that we should be more aggressively screening for and identifying the risks for dementia and other neurocognitive diseases early in life…much earlier than 65 which is the current suggested age for screening.
In fact, early screening, detection and prevention are the only weapons we have to combat the diseases of dementia, but only if we start early.
It’s no huge revelation that we need to take care of our brains, especially as we age. Medications, transplant surgeries and other advanced therapies give us at least a good fighting chance against diseases like cancer, heart disease, liver and kidney failure and most types of infectious disease.
BUT
Unlike our bone marrow, liver, and kidneys we can’t just get a new brain when ours starts to fritz out. While the debates about the locus of consciousness rage on in circles both mystical and scientific, there’s no doubt that the seat of awareness is the brain. It’s the master controller for everything that we do and everything that we are.
Broken liver = surgery and medications. Broken brain = broken life.
Why Read An Article About Dementia?
You’re probably a fairly healthy, middle-aged man with too much on your plate to worry about some obscure brain disease that probably won’t affect you….right?
The problem is…
When we see someone with dementia we are directly witnessing the end stage of a disease process that has likely been occuring in the person for many years (or decades) before the first symptoms manifested themselves.
So, why read an article about dementia?
Currently there’s no cure for dementia or the various diseases that cause dementia.
10% of Americans over 65 have dementia…and one day soon you’ll be over 65 (if you’re not already).
The number of Americans with dementia is estimated to continue growing over the next 20 years (1).
We spend $211 billion annually on dementia care and that amount is projected to double by 2040 (1).
Did I mention there’s no cure? Most of that money goes to nursing homes, memory care facilities, and to fund very expensive drugs that to this point have epically failed to move the needle.
While there are no effective therapies to treat dementia yet, we are beginning to make breakthroughs in our understanding of how to prevent or delay the onset of these diseases.
I intentionally use the word “diseases” because dementia is caused by different diseases, each with their own nuances, which is one of the reasons it’s challenging to diagnose and treat.
I won’t be describing the specific diseases of dementia for this article but here’s a very useful infographic and some links that describe the 4 main diseases that contribute to dementia.
Alzheimer’s Disease: 65-75% of all cases of dementia
Vascular dementia: 10-20% of all cases of dementia
Lewy Body dementia: 10-15% of all cases of dementia
Frontotemporal dementia: < 1% of all cases of dementia
But it’s not all doom and gloom! One positive thing coming out of recent clinical studies about dementia is…
Regardless of the exact causes of dementia, the methods for preventing and delaying it are very similar, and if done early and aggressively can be very effective.
Well, that’s hopeful!
The reason for this is that while dementia can be caused by one or more of the diseases listed above, there are some common physiological dysfunctions that are responsible for the actual damage to the brain that are present in all four diseases of dementia.
These patterns of dysfunction, while hard to treat in the disease stage, can be identified early in life through effective screening and evaluation. Efforts can then be made to reduce their impact, thus preventing or delaying the disease process.
But, before we discuss these patterns of dysfunction and the means to reduce them I think we should pause and make sure we all have a shared understanding of what dementia is.
What Exactly Is Dementia?
Dementia is not an isolated disease. It’s a syndrome, a collection of observable and experiential signs and symptoms that point to one or more dysfunctions in the brain.
Many people think of it as a kind of extreme forgetfulness. While forgetfulness and problems with memory are core symptoms for most dementia diagnoses, there are a few, lesser known factors I think are important to talk about.
Speech and Motor Problems - People with dementia often develop problems speaking, swallowing, expressing themselves, and doing simple movement tasks like walking, bathing and dressing themselves. It’s these symptoms that are responsible for most accidents, injuries and deaths related to dementia.
Behavior Changes - We often assume that people with long-term mental health challenges like depression and anxiety have a purely psychological problem or maybe an imbalance of brain chemicals like serotonin.
The problem with this belief is that physical dysfunctions in the brain, like those seen in people with dementia, can alter a person’s behavior and emotional state. It’s not uncommon for people with injury to their brain from concussion, stroke, and dementia to seem like completely different people to their loved ones.
A person who is known to be kind, generous, and amiable can become paranoid, angry, bitter and in some cases violent as their brain disease progresses. When talking with caregivers of those with dementia, they often say that watching their loved one lose who they are is the hardest part for them.
I remember one of my patients who was caring for her husband with Alzheimer’s saying…
“It was so hard. The man I cared for looked just like my husband, but acted like a completely different person. Most days, especially at the end, he felt like an angry and abusive stranger.”
Hallucinations - I wish we were talking about Terence Mckenna’s Self Transforming Elf Machines…and maybe we will in a different article.
The hallucinations of dementia are often described as disorienting, terrifying and deeply disturbing both for the hallucinator and the people around them. In the most benign situations hallucinations reduce the person’s ability to function, and make it hard for others to relate to them. At worst, it’s a full time emergency that can often result in self harm or violence to others.
With hallucinations come a sense of paranoia and distrust, not just of people, but of the very rules and structures that organize reality and give us the very necessary illusion of safety.
As my grandmother’s dementia progressed she would often call my dad in the middle of the night terrified of the men in her room who were stealing her furniture and trying to kidnap her. When they would talk the following morning, she would have no recollection of the men or of even calling my dad the night before.
Needless to say there were no scary men in her room, but to her it felt very real and very frightening. Those hallucinations plagued her regularly for a few years before she died.
I can’t imagine what that must have been like for her and I’m actively taking steps to reduce the likelihood that I ever will.
Unlike other diseases like cancer, AIDS, or diabetes, there’s no solidarity in dementia because the nature of the disease is to push a person deeper and deeper into an inner world of isolation. Many people with dementia end up dying alone while surrounded by all their loved ones.
One of the biggest misconceptions about Alzheimer’s and other forms of dementia is that it’s a gradually progressive disease that starts with small lapses in memory and then progresses over time to include speech and motor problems, behavior changes, and hallucinations.
The truth is, some of the first symptoms of dementia can be abrupt and abnormal behavior changes, speech or motor problems, and even hallucinations. This makes it hard to diagnose because those symptoms can resemble so many other diseases or syndromes including depression, schizophrenia, personality disorders, and Parkinson’s disease..
Yipee Ki-Yay
Bruce Willis, one of my favorite actors and the figurehead for this article, was just diagnosed with dementia this year. His symptoms began with problems remembering and speaking his lines clearly. In 2022 he was diagnosed with a speech condition called aphasia that’s associated with a rare type of dementia called Frontotemporal Disease (FTD).
In retrospect some of the people close to him noticed these changes in his memory, behavior and speech patterns long before he was diagnosed (2).
While FTD is rare and challenging to diagnose, there are specific genetic markers that can identify someone as having a predisposition for that disease. Had Bruce identified those genetic markers early in life he could have taken early, aggressive preventative action which is the course I suggest for all my clients.
This wouldn’t have stopped the disease but maybe it could’ve flattened the disease progress and extended the quality of his life so he could have a few more good years with his family and not be forced into retirement…and I don’t know about you but I’d happily watch another Die Hard Sequel…yipee ki-ay!
Implications for Mental Health
How many actors, writers, athletes, and comedians have recently died from from suicide, overdose or other factors related to mental health? How many of them may have had an undiagnosed neurodegenerative disease like those that cause dementia?
It’s my opinion that long-term, treatment resistant psychological conditions like Major Depressive Disorder (MDD) and severe Generalized Anxiety Disorder (GAD) could indicate an undiagnosed brain disease and the early signs of dementia, and should trigger at least basic genetic screening for neurodegenerative disease.
Unfortunately, most psychiatrists, psychologists and primary care doctors don’t think to screen for the evidence of early onset dementia in their chronically depressed and anxious patients especially if they’re male and under 65 years old.
Lewy Body Dementia, one of the most common causes of dementia second to Alzheimer’s, can show symptoms in men who are as young as 50 years old so the assumption that dementia only affects the very old is patently wrong.
Historically, most diagnosed cases of dementia are related to Alzheimer’s disease which occurs twice as frequently in women as it does in men, and often isn’t recognized until they are in their 70’s or 80’s. Many doctors are biased into thinking that neurodegenerative disease doesn’t impact men younger than 65.
The tragedy is that a 50 year old man exhibiting the signs of early onset dementia could be sitting in front of their doctor who doesn’t think to screen for the disease and instead continues to just prescribe the same antidepressant medications that haven't been working in the first place.
Our current healthcare system certainly isn’t helping the situation. Insurance-based, high volume medical care relies too heavily on overly-simplistic algorithms and stereotypes to drive the diagnosis and treatment of disease.
If you don’t fit neatly into one of those stereotypes your doctor could be overlooking a subtle and progressive illness that you could be doing something about now.
Ok, I’ll step off my soapbox…at least for now.
So back to the original question, “why read an article about dementia?”
Early screening and detection can help a person prevent or delay the onset of the disease.
Many cases of early onset dementia go undiagnosed until it’s too late.
We need to advocate for our own health or have a trusted professional who will.
There will never be a Die Hard 6.
I believe we have a responsibility to our future selves, our families and our community to learn about our personal risks for dementia and do everything we can to avoid or delay it if possible.
In the next article I’ll discuss the common physiological changes seen in most cases of dementia and we’ll use this knowledge to build a framework for understanding:
How to determine your risks for dementia.
What you can do to prevent or delay it.
How to improve your overall brain health.
For an article index for this series click this link.
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References:
1) Trends in the Prevalence and Incidence of Dementia: Causes, Disparities, and Projections for the Future, A Supplement to the Journals of Gerontology: Series B: Psychological Sciences and Social Sciences 73, no. S1 (May 2018).
2) Los Angeles Times: Concerns about Bruce Willis’ declining cognitive state swirled around sets in recent years (March 30, 2022).