Busting The Myth of Alzheimer's

Peter Whitehouse and Daniel George wrote a book called The Myth of Alzheimer's.  In it, they claim that "there is no such thing as Alzheimer's Disease."  "Alzheimer's Disease represents our culture's attempt to make sense of the natural process of brain aging that we cannot fully control."  So, in an attempt to control it, "we've created an antagonist" and named it Alzheimer's Disease.

They claim that because we don't know the "singular cause" of Alzheimer's, because we can't cure it, and because we can't differentiate Alzheimer's from normal brain aging, we should stop diagnosing people with this "label."  Labeling someone with Alzheimer's only causes them harm from the stigma attached to it.  We should stop treating people with Alzheimer's medications, and we should certainly stop looking for a cure.  Dementia is just normal aging, and you can't cure aging.

Wow.  Where do I begin?

Let's start with cancer.  We don't know yet what causes cancer or how to cure it.  We treat it with crude, non-specific poisons that risk the very life of the person who takes them.  There used to be a HUGE stigma attached to having cancer.  Remember when everyone called it "the big C?"  Cancer is not caused by one singular process.  It is caused by a complex interaction between genetic and environmental influences.  Should we not call cancer a disease?  Of course not.  Do we not tell someone they have cancer because of the stigma that might be placed on them?  Of course not.  Do my chances of developing cancer increase as I age?  Yes, they do.  Is cancer a normal part of normal aging?  No, it is not.

Likewise, we can think about heart disease.  Do most people develop accumulations of plaque in their arteries as they get older?  Yes, they do.  If untreated, will most people develop cardiovascular disease if they live long enough?  Yes, they will.  So is having cardiovascular disease a normal part of normal aging?  No.  Over the course of 50-100 years, we, as human beings who eat fatty foods and don't exercise enough, develop plaques that clog our blood vessels.  This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack.  Do we just accept this as normal aging and do nothing about it?  No, we do not.  We diet and exercise.  We go to the doctor and get tested to see how much plaque we might have blocking our arteries.  And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.

Proclaiming that Alzheimer's is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.

Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer's Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia.  This process causes disease.  A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.

Normal aging is forgetting someone's name.  Alzheimer's is forgetting your spouse's name.

Yes, diagnosis is tricky today.  We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer's Disease.  An MRI is not sensitive enough.  A blood test won't reveal it.  Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates.  Pencil and paper tests are only so telling.  Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives.  It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant.  The diagnostic process may be imperfect, but we use every piece of information we have available today.  Just because diagnosing Alzheimer's today is difficult, it doesn't mean that there isn't a disease there to diagnose!

And we should diagnose Alzheimer's if it's there.  Why?  Because we can treat it with Aricept and Namenda.  Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active.  Convincing people that Alzheimer's is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.

Maybe, in the future, we will be able to treat this disease without saying the words "You have Alzheimer's Disease."  My grandfather died in 1978 of heart failure at the age of 69.  My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.

Maybe, in the future, the treatment of Alzheimer's will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you're at risk for developing Alzheimer's, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.

Growing old without Alzheimer's.

But we have to bust Whitehouse and George's myth and acknowledge first that Alzheimer's is a disease.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Alzheimer's: A New Earth

A lot of people I know are reading A New Earth by Eckhart Tolle and discovering a new consciousness. Oddly enough, a number of people I know with Alzheimer’s have already discovered this new consciousness but not through A New Earth. They discovered it through Alzheimer’s.

Huh?

Let me try to explain.

Following a diagnosis of Alzheimer’s, you are no longer an engineer, a teacher, an accountant. You are no longer a tennis player, a chess player, a piano player. You are no longer good at math. You are no longer good in the kitchen.

You ask yourself, “Who am I now?”
You ask yourself, “Has my real self died?”

You are no longer the YOU you used to be. You are having trouble even remembering the YOU you used to be. Your FORMER Self is gone. Alzheimer’s has greedily taken hold of your former Self, is clenching it with both hands, and won’t give it back. The loss of this former Self is experienced like a death. You grieve the death of your former Self.

But once the grief has passed, you may be able to see what is left, no longer obscured by the former Self. What remains is the REAL self.

Huh?

Here’s an excerpt from my next book, LIVING ALZHEIMER’S which speaks to this discovery and includes a quote from Eckhart Tolle’s A New Earth:

I'm nothing short of awed by Jay's transformation. Here's a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man. He is not angry, depressed, resentful, blaming, jealous, fearful, or in denial. How is this possible? How can he not be angry about the loss of his successful career, his identity, as an architect? How can he not be resentful about the fatigue and the loss of cognitive capabilities that interfere with his days? How can he not be consumed with fear about his future? Why doesn't he feel lost?

Some time after our conversation, I read every one of the books Jay recommended. I will forever be grateful to him for introducing me to this knowledge that has changed the way I look at the world and inhabit my own life. Thinking of Jay's transformation, I'm struck still while reading Eckhart Tolle's A New Earth. And I get it.

"Whatever they had identified with, whatever gave them their sense of self, is taken away. Then suddenly and inexplicably, the anguish or intense fear initially felt gave way to a sacred sense of Presence, a deep peace, serenity, and complete freedom from fear....When forms that you had identified with, that gave you your sense of self, collapse or are taken away, it can lead to a collapse of the ego, since ego is identification with form. When there is nothing to identify with anymore, who are you? When forms around you die or death approaches, your sense of Beingness, of I Am, is freed from its entanglement with form: Spirit is released from its imprisonment in matter...You realize your true identity as consciousness itself, rather than what consciousness had identified with. That's the peace of God. The ultimate truth of who you are is not I am this or I am that, but I Am."

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Happy Valentine's

John and Mary have been married for fifty-three years. Mary has Alzheimer’s Disease and lives in an Alzheimer’s Care Facility. John visits her every day. Every day, Mary does not know who he is.

Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.

As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”

She accepts the lovely rose and her favorite chocolates with polite pleasure.

He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.

She swats at him and screams.

“Mary, I’m your husband. I’m John, your husband.”

Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.

“Get out!” she yells and covers her face with her hands.

“I love you, Mary. I’m your husband, John. Look at me, I love you.”

He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.

Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”

After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.

John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.

To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!

John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship---

She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?

Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.

He has a box of chocolates. Her favorite. Would she like one?

And go from there.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Finding Your Kaleidoscopes

You’re at a party in the middle of telling a story about your favorite childhood toy, but you can’t for the life of you come up with its name.

“Oh, what’s it called?” you ask yourself as you rummage around in your brain.

This classic tip-of-the-tongue phenomenon is something most people experience occasionally. For some usually frustrating period of time, a word that is stored in long-term memory refuses to be grabbed and recalled. Most people know they know it and have access to some aspect of the target word while in this state, like its meaning, the first letter, or the number of syllables.

“I know it begins with the letter K.”

Eventually, either through concentrated effort, bumping into the right associations, or when no longer consciously focusing on hunting it down, the word magically surfaces.

“Kaleidoscope!”

The average twenty-five-year-old experiences one to two tip-of-the-tongues a week. And the frequency of this normal phenomenon does increase with age. But for someone with Alzheimer’s, missing words interfere far more often and typically don’t offer helpful clues. These missing words aren’t so much on the tip of the tongue, ready to spit themselves out. They’re hiding somewhere deep in the brain. For someone with Alzheimer’s, this difficulty with recalling the names of everyday names and objects is called “anomia.”

Here’s where the concept of ‘exercising your brain’ or cognitive retraining can be extremely helpful. If you’re experiencing anomia and having trouble getting to the word KALEIDOSCOPE because amyloid beta goo is blocking the main roads to it, then having other, goo-free roads that lead to KALEIDOSCOPE can help you.

If you only have two neurons that have learned to connect to the word KALEIDOSCOPE and those two connections become jammed, then the word is inaccessible. Forgotten. But if you have ten neurons that have made connections to the word KALEIDOSCOPE, then those two gooey pathways can be detoured. The main roads that had always been the quickest routes are blocked, so it may take a longer time to retrieve the word, but you can still get there.

So the more connective neural roads you build to a piece of information, the more likely it is that you’ll still be able to get to that piece of information as some of your roads become impassable.

“Childhood toy” is blocked.
“Tube containing mirrors and pieces of colored glass or paper” is blocked.
Beatles song, Lucy in the Sky with Diamonds, Girl with the eyes:

“Kaleidoscope!”

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

The Valley of the Baby Dolls

I recently read ‘DANCING WITH ROSE: Finding Life in the Land of Alzheimer’s’ by Lauren Kessler. In it, she reveals the inner life of an Alzheimer’s care facility. I liked so much about this book but want to share one part in particular for now.

Early on in her job at the care facility, Kessler tells us about a group of ‘doll mothers.’

“One lady is sitting in the rocking chair, rocking her doll back and forth, back and forth, her eyes half-closed, her lips upturned in a half-smile. She has that dreamy look mothers have when they rock their babies. At one of the dining room tables sit Billie and two other doll mothers, all holding their swaddled babies to their chests.”

She goes on to describe both the residents and the workers fussing over the dolls, everyone playing along as if the dolls were real babies.

My grandmother who had Alzheimer's did this. She used to sit on her couch and hug them and coo at them. I think there were two dolls. I vaguely remember a stuffed bear named Henry as well, but it was the dolls she loved and mothered. I remember hearing her tell them how beautiful they were.

The first time I saw my grandmother doing this, it scared me. This was my grandmother who’d raised nine real babies now taking great care to swaddle a plastic doll. I looked to my Aunt Mary, my grandmother’s primary caregiver, for some explanation or reassurance that this behavior was somehow ‘normal’. She just looked back at me and said, “Shoot me when.”

My grandmother’s relationship with these doll babies went on for a long time. I never got used to it. What was going on inside her head? Did she honestly believe they were real babies? Was she just pretending? Did she think they were her babies or was she babysitting? By mothering and comforting these dolls, was she somehow feeling mothered and comforted herself?

I never asked her. I felt too embarrassed, too unnerved. I don’t know why they made her happy, but I know they did. Has anyone else seen this happen? Does it only happen with women with Alzheimer’s? What do you think is going on?

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Away From Her

Last night, I saw the movie AWAY FROM HER starring Julie Christie (Fiona) and Gordon Pinsent (Grant). Fiona, a bright and active woman, develops Alzheimer’s disease, and the story explores what happens to her relationship with her husband and what remains of the love in their 44-year marriage as her shared memories of their life together disappear. The movie is respectful to many of the realities of living with Alzheimer’s and doesn’t commit Fiona instantly to vacant oblivion. Christie delivers a powerfully authentic performance, revealing layers of awareness colored by confusion, embarrassment, panic, humor, and resilience through an ever-thickening fog of dementia. And Pinset’s portrayal of her husband’s denial and then heartbroken devotion are believable and moving as well.

I fully recommend the film, but I do think it simplified a lot. For example, although we see what Alzheimer’s does to Fiona and Grant, their story contains no children, no siblings, no friends or colleagues, no grandchildren. In my family and in others I know, the impact and loss from Alzheimer’s are felt not just by the person with dementia and his or her caregiver. It ripples through the family, through friends of family, through the community they live in. And it affects everyone differently.

What did you think of the movie?
How has Alzheimer’s affected you?

Lisa Genova, author of STILL ALICE, www.StillAlice.com

How Did I Get Here?

How did I get here? So many of my roads have led me here, it must be inevitable. Let me start at the beginning.

Inspired by the stories by Oliver Sacks and a curiosity for understanding how the brain works to affect behavior and reveal who we are, I entered the graduate program in neuroscience at Harvard in 1994. I quickly became interested in the mechanisms underlying addiction, how the same drug administered chronically could hijack our natural reinforcement systems and dissociate wanting from liking. My lab bench was just down the hall from Rudy Tanzi and others who were working to crack the genetic code for Alzheimer’s. I graduated with a PhD in the spring of 1998 with a keen interest in the Alzheimer’s research being conducted down the hall, but I wouldn’t say I’d been directly touched by Alzheimer’s disease yet. That came next.

Looking back, my 85 year-old, widowed grandmother had been showing signs of dementia for years. But she was a smart and active woman, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.

Then we got the phone call. She’d walked to the bowling alley at four in the morning, insisting it was middle of the day and wondering why no one was there. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.

Her daughter, my Aunt Mary, moved into her house (along with my Uncle Barry) and began working from there. Her other daughters, my mother, and, less often, I came over to help out. With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. Ironically and almost immediately, she forgot who my Aunt Mary was. When we told her that she was her daughter, Mary, I was struck by how she never believed us and that this didn’t ruffle her. Before Alzheimer’s, if you’d told my grandmother that someone was her child who she believed wasn’t, she most certainly would’ve argued with you or laughed at you or both.

She was losing herself. I watched her studying her own face in the mirror, not comprehending the old woman’s face she saw. She didn’t know her last name, the time of day, to remember to go to the bathroom when she needed to, who her children were, who I was.

But although she lost her history and couldn’t understand who we were or why we were there (she told people my Aunt Mary was a homeless woman who’d wandered in to live with her), there were parts of my grandmother that never left her. As she always had, she loved lively company. We’re a loud, Italian family. She delighted in having us there, sitting around her kitchen table, eating, laughing to tears, telling stories. And she remained good-natured and good-humored, always willing to participate. Here’s one of my favorite exchanges—

Aunt Mary: Come on, Ma, we’re going to the movies.
Nana: Okay, I don’t know who you are, but I’m coming!

The reasons why her family loved her, the reasons why we are connected, disappeared for her, but they didn’t for us. We continued to love her, and she accepted it. She understood our hugs and kisses and smiles and returned them with great enthusiasm. I know she felt included and loved to the moment she died. I know this is my Aunt Mary’s proudest achievement in life.

So I have a background in Neuroscience and a grandmother who had Alzheimer’s disease. I’m on the road to here but not quite here yet. There were a couple of additional avenues I needed to travel first.

As I visited with my grandmother, the neuroscientist in me became fascinated with her progressive dissociation from her concept of self. I wondered what it must feel like, when those parts of the brain that inform awareness and identity become increasingly inaccessible, and I wished I’d thought to ask her more when she had the communication skills to describe it to me. A lover of learning and knowledge, she would’ve readily considered my questions. What is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? This question was the seed of the novel I would write.

I needed to meet people with Alzheimer’s in the early stages, people who could still describe what it’s like to have dementia. I found them at www.dasninternational.org, an online community of intelligent, articulate, and passionate people in their forties, fifties, and sixties with dementia who support each other and advocate for better care and a cure. They bravely shared their most vulnerable experiences, helping me to create a fictional story about a young woman with Alzheimer’s that is in every way possible faithful and respectful to what having Alzheimer’s is actually like. To these amazing friends of mine, I owe my deepest gratitude and admiration.

When I began the book, I thought I was writing a story as a neuroscientist in honor of my grandmother and family. And I thought that when I finished, I’d quickly move on to other endeavors. But in the course of writing the book, my eyes were opened to more than I’d expected. I see what people with Alzheimer’s and their loved ones struggle through, emotionally, physically, and financially. I see how difficult getting a proper diagnosis can be. I see how ignored and outcast people with Alzheimer’s become. I see how close we could be to a treatment that can stop this disease in its tracks. Seeing what I see, I knew I’d be sticking around.

I’m a neuroscientist, granddaughter, friend, and author. And I’m here. How did you get here?

Lisa Genova, author of STILL ALICE, www.StillAlice.com