America's Frightening Alzheimer's Epidemic

[zenekar]

America's Frightening Alzheimer's Epidemic
By Rebecca Hyman, AlterNet

Posted on May 16, 2008, Printed on May 19, 2008
https://www.alternet.org/story/85532/


When I was about 11 years old, I saw an advertisement on TV that stayed with me. A beautiful woman in her 40s faces an elderly woman across a coffee table. The older woman beams at the younger and says, "You seem like such a nice girl." The camera shifts its focus to the face of the younger woman, who has tears welling up in her eyes. "Thanks, Mom," she says. The elder woman gives her daughter a quizzical look, and then stares vacantly into the distance.

In 2000, when I first learned my mother had been diagnosed with Alzheimer's, the only thing I knew about the disease was that one day I'd be starring in my own version of that commercial. At that point, my mother was just a bit forgetful. We'd make plans to cook an elaborate meal and, a few hours later, she wouldn't recognize the shopping list. A few months ago, however, I was visiting my parents, and it finally happened. "Who is your mother?" she asked, in a friendly voice, as I helped her dress. "You are," I said, laughing. "Really?" she asked, her English accent magnifying her astonishment. "How old are you?"

One in eight Americans who are 65 years old or older has Alzheimer's disease, according to the Alzheimer's Association's 2008 Facts and Figures Report (www.alz.org). By 2030, due to the aging of our population, that number will have doubled to one in four. There's no cure, and no certain evidence that the current medications -- Aricept, Exelon, Razadyne and Namenda -- which are said to slow the course of the disease, really work. Recent studies pitting Aricept, in combination with vitamin E, against a placebo have had disappointing results.

The costs, financial and emotional, of treating and caring for an Alzheimer's patient are astronomical. Today, the amount of time lost to American businesses by workers being forced to become caregivers of those with Alzheimer's is estimated at 8.4 billion hours a year. The monetary value of this unpaid labor -- often taking place in the caregiver's home -- varies by state, from the lowest, Alaska, at a little above $100,000 a year, to the highest, California, at about $10 billion.

Part of the reason it's difficult for states, and individuals, to estimate the medical costs of caring for someone with Alzheimer's is that the disease doesn't have a clear, predictable trajectory. Unlike, say, cancer, whose stages roughly correlate to a patient's estimated years of survival, Alzheimer's disease varies by patient. The average course of Alzheimer's disease is eight years, but some can have it for 20 years. Those with the early onset form of the disease -- people in their 30s, 40s, and 50s -- tend to decline rapidly, becoming ravaged in a few years. Others, who are older, may already be suffering from ailments like diabetes and heart disease when they receive the diagnosis of Alzheimer's. In these cases, Alzheimer's slowly drones on in the background of the other disorders, until its "side effects" -- the polite term for brain damage -- become so pronounced that the disease takes center stage. Because Alzheimer's takes such a varied and prolonged path, and is often a co-occurring condition, it's hard to parse medical statistics to isolate the costs of Alzheimer's alone. In 2000, for example, Medicare paid an average of $4,207 to treat a person with diabetes; if that same person had diabetes and Alzheimer's, however, the cost increased to $10,943.

For most families, the stress of coping with the disease in real time is compounded by the terror of budgeting for the future. Because patients with Alzheimer's can be ill for a long time and can require elaborate care in skilled and nursing home facilities, health insurance companies are loathe to cover individuals with the disease. Translation -- if your mom, like mine, didn't have long-term health insurance before she received her diagnosis, you can forget it. You can get nailed by home owner's insurance, too, if you decide to move your parent into your home before you put theirs on the market. If the company discovers that your parent's house is vacant, they can cancel the policy.

In the seven years I've been attending a free support group, sponsored by the Alzheimer's Association, I've heard about every variation of the disorder and learned about others forms of dementia, too. There's vascular dementia, caused by imperceptible strokes; Lewy Body dementia, the symptoms of which are a hybrid of Parkinson's and Alzheimer's; and Frontotemporal dementia, which destroys logical reasoning long before it attacks memory, leaving its sufferers especially prone to scam artists, the kind who promise they'll marry you as soon as you change your will.

I'll never forget the first time I went to my group, one just for adult children of parents with the disease. Each member introduced herself, gave a brief history of her parent's illness and asked for practical advice: Anyone heard of a good tranquilizer for agitation? A way to take the car keys away from mom without risking a riot? A kind of food to give a parent who can no longer swallow? By the end of the meeting I felt like Odysseus, granted the privilege and horror of visiting Hades and being allowed to come back. Afterwards, I went directly to a bar to meet friends. I found I had no words to explain where I'd been.

There's little incentive for anyone not directly touched by the disease to want to think about it. Movies like Iris and Away from Her have tried to raise awareness of Alzheimer's among members of the general public, but the films tend to sentimentalize dementia by wrapping it in the soft folds of late-life love. The first scene in Meet the Savages comes closer. But Alzheimer's is more like the movie Groundhog Day. As the patient's short-term memory becomes obliterated, he says the same thing, over and over. But you're in the movie, too. You think there was a yesterday, but you're not so sure anymore. I've watched people in my support group wrestle with an existential conundrum: What's worse, to tell your mother that she has Alzheimer's, knowing that you will have to do it, again and again, causing her tremendous grief and surprise, or to lie to her face, when she asks you what's wrong?

People often say to me, in the moment of thought-defying panic that occurs when they find out my mother has the disease, "Well, at least she doesn't know she's suffering." But that's not how Alzheimer's works. Even though my mother can't tell me what day it is and doesn't remember that our house has three floors and she's on the second one, she knows that something's wrong. She knows that she can't find our house by herself and consequently, she's terrified of being left alone. I spend most of my time, now, when I visit, reassuring her that my father is still alive, he's just downstairs and hasn't abandoned her.

At the same time, there's some essential truth to what these people are saying. I can tell my mother that I'm terribly sad about my life, cry, hold her hand, and know that in five or ten minutes she won't remember I'm upset. My grief -- and I imagine the grief of one's own child stings like no other -- can no longer become hers. Those who love a person with Alzheimer's are caught in a state of perpetual hesitation: How can we grieve, when the person is sitting there before us, calmly drinking a cup of tea? Social workers have a theory for this condition; they call it "ambiguous loss."

Pauline Boss, one of the first scholars to investigate the concept, talks about the particular difficulty that families and caregivers face when a person is either psychologically absent but physically present, such as with addiction or Alzheimer's, or the reverse condition, such as when a wife learns that her husband is missing in action. "Spouses of dementia patients or brain injury survivors are often told by well-meaning professionals or friends that they are lucky because a mate is still alive and with them," she writes. "This does not help, because they feel they no longer know the person. Labeling their loss ambiguous allows them to recognize the real source of their distress and begin the process of coping and grieving that will permit them to move on with their lives."

Right now, those of us struggling with Alzheimer's are a tight community -- I hear, often, from others that they don't even try to talk about their situation with those who haven't experienced it. You have to be there, they say. But if I could paint an accurate picture of what America is going to look like when 25 percent of our elderly population has this disease, I would. I have some hunches. Even now, I have a kind of radar for dementia; I can spot it in a person even before they open their mouth. People with dementia have a kind of gingerly attitude toward the world -- they walk carefully, as if they fear they'll fall; they're watchful, as if anticipating a threat; and they betray themselves with small errors -- their pants are a little too high on their ankles, or their blouse isn't quite right for the season.

"It's crucial that families get a professional diagnosis of Alzheimer's disease as soon as they suspect their loved one may be suffering from dementia," urges Jane Tilly, the Alzheimer's Association's director of quality care advocacy. "The sooner a person receives a diagnosis, the more time he has to make important decisions about the rest of his life, when he is still able to do so. Whom will he choose to serve as his proxy when he can no longer make decisions about the kind of medical care he requires? Who will take care of his finances? And as the disease progresses, will he choose palliative care or heroic measures to preserve his life?"

Alzheimer's demands gentleness from others. The disorder, most of the time, is terribly boring and frustrating, for patient and caregiver alike. It's slow, and cruel, and inexorable. In short, it's antithetical to our cultural values -- it's anti-productive, it's nonrational, and it doesn't have a happy ending. It scares me to think that we are going to continue to ignore this disease, and the threat it poses to our culture, because it isn't pretty, and we don't know what to do. When I think about where we are now, in terms of our understanding of the disease, and our limited caretaking infrastructure, and about the coming tsunami of Alzheimer's patients, I think about Bill McKibbon, writing The End of Nature, his clarion call to halt global warming, 19 years before this year's photograph on the front page of the New York Times of that lone polar bear, on the tiniest of icebergs, drifting in the midst of a melted sea.

Right now, a number of prestigious medical institutes are investigating the "Amyloid Hypothesis," a theory that damage to the brain's nerve cells in Alzheimer's is, in part, an effect of a malfunction in the processing of a protein fragment called beta-amyloid. Dr. Constantine Lyketsos, chairman of Johns Hopkins Bayview Medical Center's Department of Psychiatry, and his team of researchers are working to understand the pathology of Alzheimer's disease by tracing the location and aggregation of beta-amyloid plaques in the brain. "By using magnetic resonance imaging (MRI) to scan the brain of a person who has been injected with a temporarily radioactive stain," he explains, "we can create a map of the disease and, in time, begin to trace the various ways in which the diseases progresses in different patients' brains."

Lyketsos hopes that in the near future medical institutes will create an infrastructure similar to that of contemporary cancer research, with research labs and treatment centers in the same building, allowing for greater cross-pollination between research scientists and clinicians. "We want Congress to recognize the necessity of increasing our research funding now, before the wave of new patients is upon us," Lyketsos says, "but we just haven't reached the tipping point yet."

When I go and visit my mother, now, there's not very much that we can do. Large crowds increase her disorientation and heighten her anxiety. She can no longer read or follow the narrative of a movie. But the disease has also softened her. My mother was intensely bright -- this made her sharp, both in wit and in judgment. Now, she and I have slowed down. We take pleasure in the color of a flower's petal or the way the light hits the branches of the trees outside the window on the second floor of the house. She can't say much, but now that she has been sanded away by Alzheimer's, she asks me the only question that is really important: Are you happy? She tells me I'm a marvelous person and that people are lucky to know me. I squeeze her hand and tell her that it's she who made me.

For information about the disease, to receive medical referrals and to find a support group, call the Alzheimer's Association help line at 1-800-272-3900, or on the Web at www.alz.org. To advocate for greater research funding for Alzheimer's disease, write to your congressional representative, or to members of the House Budget Committee, which allocates funding for the disease.

Rebecca Hyman is a writer and professor living in Atlanta, Ga.

© 2008 Independent Media Institute. All rights reserved.
View this story online at: https://www.alternet.org/story/85532/

[parlyvous]

America's Frightening Alzheimer's Epidemic
By Rebecca Hyman, AlterNet

Posted on May 16, 2008, Printed on May 19, 2008
https://www.alternet.org/story/85532/

When I was about 11 years old, I saw an advertisement on TV that stayed with me. A beautiful woman in her 40s faces an elderly woman across a coffee table. The older woman beams at the younger and says, "You seem like such a nice girl." The camera shifts its focus to the face of the younger woman, who has tears welling up in her eyes. "Thanks, Mom," she says. The elder woman gives her daughter a quizzical look, and then stares vacantly into the distance.

In 2000, when I first learned my mother had been diagnosed with Alzheimer's, the only thing I knew about the disease was that one day I'd be starring in my own version of that commercial. At that point, my mother was just a bit forgetful. We'd make plans to cook an elaborate meal and, a few hours later, she wouldn't recognize the shopping list. A few months ago, however, I was visiting my parents, and it finally happened. "Who is your mother?" she asked, in a friendly voice, as I helped her dress. "You are," I said, laughing. "Really?" she asked, her English accent magnifying her astonishment. "How old are you?"
...

A frightening, puzzling 'disease' at best. I've discussed Alzheimer's with others and being the type of people we are, we try and solve the puzzle of Alzheimer's with our own ideas of cures. It is the moments of lucidity that have me wondering "OK how can we observe the brain when it is in these periods of normalcy and try and understand why it occurs."

Why do some get this plaque in the brain and those of us fortunate enough to dodge the bullet of Alzheimer's don't?

I've had a family friend's wife diagnosed with Alzheimer's. I look back and realize the signs were there years before, but only noticed in passing, as we had a family member with a serious disease and were wrapped up in our own hospital stays, Doctor appointments, surgeries. Nothing was really said until she progressed to the point of needing far too much care for even her doting husband to provide and she went into a care facility.

She was vital and kind and had a interesting history beginning during WWII where she was a nurse and ambulance driver. There she met her to-be husband, they married and had 3 daughters who went on to having amazing careers and eventually the couple moved to Whidbey Island surrounded by nature and it's denizens. They seemed to have the life others could only dream of and then Alzheimer's came and took that fairy-tale away. Her husband, our friend had to promise the home to the care facility when he passed from this world, to pay for her care. No 'estate' to be left to family, all the years of work and effort went to the devastating disease that lurks behind the scenes. The disease that we all are aware of, but don't want to think about too long and hard about.

It is a bitterly cruel disease, taking a loved one from us, and leaving only the shell to remind us of the person we knew and loved.

I saw the movie 'Still Alice' with Julianne Moore (2014) and watched her portrayal of a woman realizing she had Alzheimer's and the eroding of her mind and sense of self-awareness. 'Away from Her' (2007) with Julie Christie, was touching, but gave Alzheimer's a rather romantic bent. There are eight other movies regarding this subject.

As stated in the original posting Alzheimer's devastates more than the victim. Family and friends lose a loved one yet see them every day. As the disease progresses the work load in caring for the afflicted becomes more demanding and eventually is overwhelming. For some the disease progresses quickly, in others the erasing of mind is slower. One cannot imagine how it is for the one experiencing this disappearance of self and awareness it is happening. I tend to think the quick onset of Alzheimer's would be preferable, though one has no time to perhaps say good-bye and take care of the matters of life to ease the way for those left in the wake of Alzheimer's.

Perhaps we live too long and such diseases are the inheritance of being long lived. Hearts wear out, limbs fail, eyesight dims. But how can one not strive to fight and rage against the dying of the light when it is oneself or a loved one whose very essence is taken?

The battle goes on to find a cure and with an ever growing population of elders as was said, the increase of those afflicted only grows. We must remember it isn't a disease that only afflicts others, it can come home to roost without warning. With no cure in sight, we must prepare ourselves hoping for the best, but still prepare ourselves with long-term care insurance, estate planning and supporting research.

[wisewomn]

There is a lot of information on alternative approaches to AD if you look for it. You might start with Dr. Mary Newport's treatment of her husband with coconut oil Here's a link.

It goes without saying that everything you ingest should be organic and whole. Give up gluten and sugar, stay low carb.

I watched a 12-part webinar on brain health that was very encouraging.

Other docs to check out are Jacob Teitelbaum, Patricia Gerbarg and Dr. Brown, Dominic D'Agostino and Angela Poff, Vincent Fortanasce , Jay Faber, Pamela W. Smith, Fred Pescatore, David Katz,Dr. Bredesen of the Buck Institute,David Perlmutter.

One thing constantly emphasized by many of them was a ketogenic diet (similar to Paleo but can be done vegetarian, too), which emphasizes healthy fats (like coconut oil), moderate protein, and low-glycemic carbs. Also, some people have genetic markers for later years AD (makes them more likely to get it), so just as an FYI have your DNA tested by 23andme.com for example. The sad truth is that traditional medicine has absolutely nothing effective to offer for AD treatment and very little for other brain diseases.

[KittyW]

A frightening, puzzling 'disease' at best. ...
Why do some get this plaque in the brain and those of us fortunate enough to dodge the bullet of Alzheimer's don't?...Perhaps we live too long and such diseases are the inheritance of being long lived. Hearts wear out, limbs fail, eyesight dims. .

Alzheimer's is truly a devastating travesty -- heartbreaking on both a human and economic scale. One I have personally experienced in the deterioration and death of my grandmother, an incredibly independent and pioneering woman.

I think our culture is in mass denial about the effects of the industrialized food system on the development of chronic diseases and deterioration of the human brain.

Foods stripped of their antioxidants and fibers, coated in pesticides, filled with inflammatory sugar, artificial ingredients made from coal tar and petrochemicals, genetically modified foods... just about everything in the middle of the grocery store, and certainly all the food sold in drug stores and dollar stores... these all set into motion epigenetic cascades of damaging inflammatory and metabolic processes.

People cling to unhealthy processed foods and feedlot animals as if they are a birthright, or remain willfully ignorant of the consequences of regularly eating damaging junk. Or perhaps they are simply uninterested or mesmerized by the dripping images of bacon-laden burgers on TV ads. Just look at what's in people's baskets in the grocery store. It's frightening.

And the link to the explosion of Alzheimer's is not that mysterious. Years of inflammatory assaults on the body and brain. These things do not happen overnight but are an accumulation of a lifetime.

Until people really care about what they put into their bodies, these epidemics of diabetes, Alzheimer's and other chronic diseases will run rampant.

Earlier this year scientists finally declared the definitive link between high blood sugar and increased Alzheimer's risk. Even though it's been known for years that diabetes can double the risk of Alzheimer's.

Yes, I'm on a rant. Diabetes goes back for 3 generations in my family, and I'm breaking the pattern. I won't go there. But I get very frustrated seeing family members barreling down that track.

[wisewomn]

Here's a link to preventive measures on Oprah.com

[parlyvous]

...I think our culture is in mass denial about the effects of the industrialized food system on the development of chronic diseases and deterioration of the human brain.

Foods stripped of their antioxidants and fibers, coated in pesticides, filled with inflammatory sugar, artificial ingredients made from coal tar and petrochemicals, genetically modified foods... just about everything in the middle of the grocery store, and certainly all the food sold in drug stores and dollar stores... these all set into motion epigenetic cascades of damaging inflammatory and metabolic processes.

...

How true. Until we adopt a plant-based diet, we will see the continuance of such disease processes. With the junk food, high sugar, animal fat etc. as you've said.

I'm curious as to records of incidences of Alzheimer's and diabetes even 150 years ago. Would be interesting to find out.

Also yes, our environment is so vastly polluted it takes dedication of self-care to try and avoid such dread diseases.

As for the general population, they most probably will continue to gamble with their health and will pay the piper at some point in their lives.

Western Society has a devil may care attitude, which is fine, if it only impacted each individual, but since our human-based actions, result in environment destruction, other specie destruction we all are called to task and at times, pay for other's choices. (rather like second-hand smoke).

We can't hide, as pollution and animal agriculture is sadly vast and impacts the entire planet.

[rossmen]

I read you...

I see my family killing themselves slowly with processed food and western medical care. In the past, and all around me now. And i see the forces in society now facilitating this, including vacists on wacco and poverty and environmental subsidies which make fast food the best meal deal.

Thanks for being a consistent writer in educating others about the dangers our modern society embraces.

Alzheimer's is truly a devastating travesty -- heartbreaking on both a human and economic scale. One I have personally experienced in the deterioration and death of my grandmother, an incredibly independent and pioneering woman.

I think our culture is in mass denial about the effects of the industrialized food system on the development of chronic diseases and deterioration of the human brain.

...

[spam1]

I'm curious as to records of incidences of Alzheimer's and diabetes even 150 years ago. Would be interesting to find out.
.

I guess very low incidences of both. Life expectancy was about 40 years, and I guess hunger was a big problem, so there's that. (Yes, I'm always that guy that tries to add a bit real data to these thoughtful discussions.)

references: https://www.legacy.com/life-and-deat...ellum-era.html
and : https://ourworldindata.org/famines/

[podfish]

I guess very low incidences of both. Life expectancy was about 40 years, and I guess hunger was a big problem, so there's that. (Yes, I'm always that guy that tries to add a bit real data to these thoughtful discussions.)

references: https://www.legacy.com/life-and-deat...ellum-era.html
and : https://ourworldindata.org/famines/

That's due to infant mortality. Old folks were pretty old

[rossmen]

Will science solve degenerative brain Diseases? Hopefully not. Our intelligence is world destructive.

That's due to infant mortality. Old folks were pretty old

[podfish]

Will science solve degenerative brain Diseases? Hopefully not. Our intelligence is world destructive.

to restate your question - will science allow for people to have extremely long lives? - I sure hope not, but that's based on my personal prejudices/preferences. I can't really grasp what it would be like to live orders of magnitude longer. It's hard enough to grasp living as long as we often do. But since the damage done by intelligent humans is usually done by younger ones, I'm not sure that living longer will affect that much. But to take a really long view - we can't really destroy the world anyway. We can change it a lot, but not as much as whatever split the moon off from our planet did, for just one example. Aesthetically, it's pretty debatable whether the cool things brought into the universe by people's intelligence (like music) are worth the cost in the alteration of the 'natural' (not instigated by humans) world. But maybe aesthetics itself doesn't exist without humans. hmmm...

[Cheval]

Again, we have a local gem in Allan L. Bernstein, MD conducting research and clinical trials in Sebastopol, primarily on dementia and Alzheimer's disease. Nutrition (as stated above), community engagement, movement, music, art, quality sleep, etc., are mandatory for brain health. We are fortunate to have excellent support groups in the Santa Rosa community for family members of dementia patients.

If you are at all interested in participating in research or if you may be at risk for the onset of AD, please contact us at North Bay Neuroscience Institute (707) 827-3593.

[rossmen]

I agree our kind is probably less destructive than a huge meteoric cataclysm. I have to admit that the potential for biotic collapse due to our prolifergate altering of the carbon cycle does keep me up at night. Can we really live on pond scum? One of my few food distaste, spirolena.

Have to agree to disagree about whether the young are more destructive than the old. Consider the equation; wisdom vs health care cost. I have had the experience of living with and caring for my parents through dementia and death. Dementia can be kind, life changing, and beautful, as well as difficult.

As I live longer (currently 58), my ideas of how and length for my living continue to evolve, can't write about this for others.

to restate your question - will science allow for people to have extremely long lives? - I sure hope not, but that's based on my personal prejudices/preferences. I can't really grasp what it would be like to live orders of magnitude longer. It's hard enough to grasp living as long as we often do. But since the damage done by intelligent humans is usually done by younger ones, I'm not sure that living longer will affect that much. But to take a really long view - we can't really destroy the world anyway. We can change it a lot, but not as much as whatever split the moon off from our planet did, for just one example. Aesthetically, it's pretty debatable whether the cool things brought into the universe by people's intelligence (like music) are worth the cost in the alteration of the 'natural' (not instigated by humans) world. But maybe aesthetics itself doesn't exist without humans. hmmm...