Six Alzheimer’s Myths

Renowned neurologist Rachel Schindler debunks the most commonly held misconceptions about life-altering — and often terrifying — disease

1. “Memory loss is a normal part of aging.” Part of this misconception comes from the fact that memory loss is so common. However, being common does not make it normal. It sometimes takes longer to recall things as we get older. I often liken this to physical abilities — for example, running — which we are often not as good at, or not as fast at as when we were younger. But we can still eventually get there, or remember what it is that momentarily eluded us. How much memory decline occurs as a part of normal aging is not entirely clear. But it is when someone begins to forget more basic, long-standing information, or when their ability to think and reason is impaired, that there is a problem.

2. “Alzheimer’s disease only affects old people.” While the greatest risk factor for AD is age, and thus the longer you live the more likely you are to get it, there are still individuals who develop AD at younger ages. While it is more common to develop AD after the age of 65, there are still people who develop the disease in their early 60’s and 50’s — and although rare, there are even some with a very rare, distinct form who develop AD in their 40’s and 30’s. The group under the age of 65 accounts for 5-10% of all patients with AD.

3. “People don’t die from Alzheimer’s disease.” In fact, AD is a fatal disease and is the sixth leading cause of death in the U.S. It is perhaps not as obvious as other fatal diseases such as heart disease or stroke, because it is chronic, insidious and progressive. In addition, the immediate cause of death is sometimes something caused by AD, such as infection, which people sometimes don’t realize was ultimately due to having AD.

4. “There are no treatments for Alzheimer’s disease, so why bother getting a diagnosis?” While there are no cures for AD, there are treatments available, which may provide some symptomatic benefit.

5. “Dementia is the same as Alzheimer’s disease.” AD is just one cause of dementia, of which there are many. “Dementia” describes the symptoms and signs you can see. It is a when someone has lost their ability to function due to cognitive impairment. While AD is the most common cause of dementia accounting for 60-70% of cases, there are in fact over 100 causes of dementia. Some examples include dementia due to multiple strokes (vascular dementia), Lewy Body dementia, dementia related to Parkinson’s disease, and dementia due to head injury.

6. “You can get Alzheimer’s disease from the aluminum in soda cans and cooking pots.” There was some evidence from animal studies in the 1970’s, which suggested that aluminum exposure could cause AD. However, subsequent studies to investigate this further did not show this to be the case and it is generally not considered to be true by the scientific community.

Dr. Rachel Schindler is a neurologist with subspecialty training in Neuropsychiatry and Behavioral Neurology. After completing her training, she was Director of Behavioral Neurology and Neuropsychiatry, Chief of Neurorehabilitation, and Assistant Professor of Neurology at the State University of New York at Stony Brook. There, she founded and directed The Neurobehavior and Memory Disorders Program, a comprehensive multidisciplinary program serving patients and their families with neurobehavioral and memory disorders related to Alzheimer’s disease and other dementias, head injury, stroke, epilepsy, and other neurological disorders. In 2000, she joined Pfizer, where she is currently Vice President, Clinical Disease Area Expert in Alzheimer’s disease. In addition to her leadership role in development of medications and setting strategy for AD, she has been involved in various U.S. and global initiatives and consensus groups to advance research, public policy, and the care of Alzheimer’s patients. Currently, she is the Co-Chair of the Alzheimer’s Association Research Roundtable and Chair of the Medical and Scientific Advisory Board of the Long Island Alzheimer’s Foundation.

22 comments so far.

  1. avatar Jeannot Kensinger says:

    As the saying goes :”we all forget where we put the car keys, when you do not know what to do with them, then there is a bigger problem.
    I found my bright husband not being able to comprehend, I then knew we had problems.

  2. avatar Chris Glass` says:

    I took the Dementia Dialogues course at the Veteran’s home where my father-in-law is currently living. It was a great help in understanding the way different forms of dementia, including Alzheimer’s manifest in certain people. I’ve read extensively on this because I was a caregiver for several years. I don’t think some people will ever grasp the damage this disease can do to a mind without experiencing it.

    There were heartbreaking times when my father-in-law realized that things weren’t right but couldn’t transition back to the person he had been. We are one of the lucky families because he still has verbal skills and can function fairly normally in his structured environment. He still recognizes me and enjoys lunch out when we visit.

  3. avatar D C says:

    There has been no dementia on either side of my families or my husbands families, so in a way, fear of AD or dementia of any kind is maybe unfounded for me.  My husbands best friends mom, and one of my oldest friends dad both have/had it and it’s just the saddest thing I can think of happening to anyone.  I often wonder if maybe if my dad’s side of the family lived longer than 70 it might have shown up. 

  4. avatar Maizie James says:

    Thank you, Dr. Schindler for addressing myths about Alzheimer’s.

    Memory loss is indeed an important clue to early symptoms of Alzheimer’s. And like most diseases, onset symptoms vary from one individual to another.

    Most individuals who have general knowledge about early symptoms of Alzheimer’s are usually aware that something is wrong when memory loss goes beyond the ‘typical’ forgetfulness we experience in our daily lives. Also, I should stress that like most diseases, Alzheimer’s affects each person differently, thus many individuals might not be aware of important clues, which might signal onset AD.

    I began noticing changes in memory and cognition about two years ago. It was frightening. Worse, the awareness that my thinking, reasoning, and memory was diminishing triggered high anxiety and panic, which made the symptoms worse. I sought medical attention, and was put on Aricept. I’m not sure/confident if the medication is slowing down the symptoms, because there are times when the symptoms are pronounced, and times when the symptoms are hardly noticeable. Yet, there are ‘constants’ which, I’ve come to accept.

    For example, I no longer write professionally because I see evidence of poor editing, which didn’t occur in the past. I omit lengthy passages that I ‘thought’ I wrote, I confuse homonyms, and I misspell or misuse words that I ‘KNOW’ I should know. I’ve also learned to improvise to help diffuse the panic I experience when I can’t recall basic information. For instance, I now keep various ‘cheat’ sheets in my purse, including a list of family contacts, which also has MY name, address, and telephone number – because too often, I get a complete blank if asked these common questions. Similarly, I keep notes all over my home, and small notebooks on my desk, kitchen counter, nightstand, etc., to write down thoughts, words, and ‘clues’ for easy reference.

    Again, memory loss for the individual who is aware that something is wrong, can be crippling. I can’t tell you how often I have ‘blank out’ moments; not remembering where I am, or why I’m there. The latter is especially traumatic when I’m away from home; shopping or browsing in a store. I simply experience brief moments feeling lost. For now, these episodes are brief; lasting only a few minutes. I also experience confusion, trying to remember simple instructions. I used to be able to follow oral and written directions quite well; yet no longer. I now have to read, and re-read again and again until whatever the instructions ‘click’ in my mind.

    Also, I often become thrown off-guard when asked a direct question. It’s become very upsetting when I experience lengthy delays processing responses to general questions such as, “How was your day?” I become overwhelmed with panic which I’ve not learned to control. Therefore, I’ve become more reclusive.

    One ‘myth’ that was omitted is the opinion that individuals who don’t use their minds for critical and/or analytical thinking are more prone to Alzheimer’s. There are some who continue to believe that those who are scholarly and brilliant minded are less likely to succumb to AD. I’m not sure if there is a consensus of this opinion among academics/neurologist. However, I’ve known as many ‘smart’ individuals as ‘dumb’ who fall victim to Alzheimer’s.

    Thanks again for your article.

    • avatar Maizie James says:

      Ps: I wanted to share my thoughts as someone who is being treated for early symptoms of AD. Yet, It took me almost an hour to write the above post. Whereas, three years ago it would have been written within ten minutes maximum w/o errors ):

      • avatar LandofLove says:

        Maizie, thank you for your brave comments. Best wishes for your continued good health, and I hope you will post as often as you are able.

      • avatar Maizie James says:

        Rita,

        Thank you for your encouraging words.

    • avatar Chris Glass` says:

      Dear Maizie,
      It is possible to lose awareness as well as have memory lapses from a variety of different causes from TIA’s to migraines or undiagnosed epilepsy or just plain stress if there is enough of it. You might want to consider getting a second opinion with a neurologist for a complete workup. Those things can also interfere with your writing. A good doctor will also do tests to make sure there is no physical origin for your symptoms. I will be praying for the best.

      • avatar Maizie James says:

        Chris Glass,

        Thank you for your comments. I agree that second opinions are important.

        I recently moved to Virginia to be closer to one of my sons. Consequently, I am now seeing new health care providers, including a neurologist and *psychiatrist.

        *I confess that I don’t manage stress well, and I’m aware that high anxiety triggers AD symptoms.

        Again, thanks!

  5. avatar phyllis Doyle Pepe says:

    Dear Maizie: Am so sorry to hear about your symptoms. You have been and I hope continue to be a wonderful contributor on Wow. I must tell you that I, too, have information in my purse re: numbers and names because I blank out sometimes when asked to give my phone number or even my address, but I don’t attribute that to age nor to the start of AD, because I have always had this problem. Because I have moved so many times in my life all those numbers become one big blob in my brain, I guess. Have you actually been diagnosed? Good wishes to you, Maizie, and I hope you just have what we call, “the can’t hardlies.”

    • avatar Maizie James says:

      Hello Phyliss,

      I’ve not been diagnosed with AD. Rather, test results indicate that I have symptoms that may or may not be related to early Alzheimer’s. Similarly, I have essential tremors on my right side which mimics Parkinson’s, a disease which runs in my family. [I had a mild stroke in 1996. And when I over-exert the essential tremors are worse.] The neurologist I had for many years is of the opinion that the CT & MRI test results are inconclusive, and attributes the AD symptoms primarily to stress. Thus, he advised Aricept.

      As an adult, I’ve always had a fear of ‘loosing my mind’. Mid-life came with major upheavals that I was unprepared for – divorce, radical change in lifestyle/income, illness. I don’t think I’ve adjusted, and I certainly have not ‘recovered’.

      Just the other day I began reading a book titled, Snow Falling On Cedars by David Guterson. Preceding the narrative there is a quotation from Dante’s, Divine Comedy. I read this famous/familiar verse many times in the past, yet now its meaning resonates more profoundly … especially during this difficult stage of mid-life.

      It reads:

      “In the middle of the journey of our life I came to myself within a dark wood where the straight way was lost. Ah, how hard a thing it is to tell what a wild, and rough, and stubborn wood this was, which in my thought renews the fear!” – Dante, The Divine Comedy

      I’m not sure if this make sense, but I feel the fear and the disillusion of my weary and burdensome journey , which I suspect has metastasized into abnormal changes in my thought processing, reasoning, and memory.

      Thanks for commenting.

      • avatar Joan Larsen says:

        Maisie . . . it was so wonderful and warming to feel the warmth of the old days on wOw as I once again read your writing.  We care for each other here, want so much good for the other, that I was as upset as the others that a chain of events seem to have befallen you. 

        Age and time seem to open us to such a number of surprising and – yes – appalling health problems that we once thought only happened to other people.  Not one of us is immune to illness and concern.

        You quoted Dante.  I would like to tell you my favorite quote that I try to live in good times and bad.  I always have it before me and I find it gives me new life and belief:

        In the depth of winter, I finally learned that within me lay an invincible summer.   – Albert Camus.

        It is true I found.  I will make the best I can over things that befall me.  And Maisie, I hope that you will find sunshine still there at times in your own days.  We are rooting for you.  Joan

      • avatar mary burdt says:

        Hi Joan, When my husband passed away earlier this year, one of my friends passed me a note with those powerful words by Camus. I, too, have this saying placed by my computer so I can read these words on a daily basis. They so inspire me.

        How have you been? We have been out of touch for a while. I miss you. Mary

      • avatar Joan Larsen says:

        Hi Mary.  You have to know that I think of you so often, knowing that the good days and the bad days still roll through your life.  We go on, but some days we don’t go on.  I am one that believes that when the memories come and overwhelm us that it is best to let them take their course, not fighting that.  For grieving should be understood.  there is no specific time — and even years later, there are times that knock us for loops.  However, you are one strong lady.  You are smart as well.  . and you will prevail.  And somewhere within IS that invincible summer.

        I am seeing the various effects of age around me more and more.  I find myself in the temporary caregiver role for friends – something I had never envisioned.  It DOES give you a window to what the future could bring — and it is scary, really scary.

        But I want to end on an upbeat mode, Mary.  As you know, my beliefs are very strong and I have never found them wrong.  Therefore, as each grandchild hits graduation age, I refuse to give money that is gone in a flash and not remembered.  Instead, I do only one thing.  As going with Grand Canyon Expeditions on the Colorado River thru the entire Grand Canyon at the bottom for 10 days I have found to be unique (for I have done it), I give each child this life-changing trip before they go off toward adulthood.

        Not only is it one of the most beautiful things to have done, it is one of the most challenging as the rapids are high and many.  The trails at the bottom go to secret high waterfalls, but for city people, this is a whole new experience.  The temp may be very high but the river is 50 degrees and hitting you constantly on the raft.

        I believe you never will ever forget this one, but you have grown immeasurably in those 10 days and confidence is not longer an issue.  You have proved yourself.

        And so, Mary, I have been seeing videos, photos of the journey and hearing excitement that goes on and on.  If we do one thing for grandchildren, this one is it.  They will live on this for a lifetime.

        One of a whirlwind of things I am doing that makes me feel extremely good. . . and for now, all is well.  If we ever get parted, ask Joni at WOW for my e-mail address, OK?

        Know you are in my thoughts, Mary.
        Joan

  6. avatar Stretch says:

    I lost my extraordinary Mother to this terrible disease. What was worse
    than watching her fade away, was being fooled by her sudden bouts of connectedness
    and recognition, only to have her snatched away in a heartbeat!

    Thank you for discussing this heartbreaking disease.
    Rita

  7. avatar J Holmes says:

    I am so happy this will be a regular feature for WOWOW; many of us will be experiencing the effects of dementia on loved ones as well as ourselves.  Maisie, thank you for sharing with us.  I love the quotes you and Joan have posted, they are a help for me while my family deals with our beautiful mother’s dementia.  I often tell others I compare my mother’s thinking with a kaliadescope – 80+years of memories colliding with the present. 

    • avatar Joan Larsen says:

      Lovely Janet . . . you’re on and I find you also are dealing with a heart-wrenching experience that saps your own vitality over time.  Unfortunately, you too can be dragged down to the depths, and then it is hard to recover or be the person you once were. 

      On another subject, I have book reviews but right now no place for them here.  I don’t want to ever lose track of you as the two of us should be in contact forever for reasons we only understand.  If needed, Joni will give you my e-mail address if it is ever needed and we can continue our book conversation at will privately.  Please keep that in mind, Janet.

      Been missing you here.  Joan

      • avatar J Holmes says:

        Joan,
        Thank you!
        Books – a passage to serenity.
        Janet
        PS Your message re graduation presents – recently I unexpectedly accompanied my 25 yr old daughter on a 11 day adventure to Florence and Rome.  Needless to say it was a trip of a lifetime for both of us and I loved being with just her for those 11 days.  In Tuscany we met a gentleman & his granddaughter recently graduated from hs.  He told of all the countries he had been to due to his grandchildren.  For each of their graduation he would take them on a trip of their choosing.  I was overwhelmed when I heard this – what wonderful memories the grandchildren will have long after their grandfather dies.  Giving experiences – more valuable than $$.

  8. avatar Linda Myers says:

    My sister cared for her MIL throughout the stages of the disease. Her MIL was one of the most peaceful type people throughout her life and even in the end stages of the disease, she became even more so to the point of all lines of aging disappearing from her face.

    My FIL was one who had more outbursts and would attempt to leave the house, thinking he could return to his home, etc. of decades past as if he was in the wrong place now. Before the disease, he was one who would sneak cookies from the kitchen at night and have his own few minutes of fun. Shortly after going to the nursing home, he started this again. One night the nursing home, he snuck some bread from the kitchen and tried to eat it so fast he choked on the bread and died a few days later as a result.

    Both seemed to still retain a part of the past in how it influenced the disease itself and both died not from the disease but from events otherwise related to care or mishaps. of the care. I have always thought even when they seemed to not be in the present, they continue to live in a place and time within the mind? As if the superhighway of the mind becomes crossroads without navigation anymore. So they either wait oblivious to us to where they are at or for moments the navigation clears again to the present.

    • avatar J Holmes says:

      Linda, I too see this with my mother; there are certain areas of her personality I am positive will never change and thankfully one is the joy on her face when she sees babies and young children.  Another trait I still see – her expectation of good service.
      Last year a church near my parents residence had a road sign “the setting sun is as beautiful as the rising sun”.  I smiled when I 1st saw it and I have it as my mantra when I see my mother.

      • avatar Linda Myers says:

        Although my mom did not live into the age of the disease, the last time I spent time with her before she died suddenly was a week earlier during the holidays. I took her up to the drugstore in my car and waited outside the doors. She came out and walked right by me over to another car which looked like hers with two men inside and started pounding on the door. Thankfully, they just kept the doors locked and did not hurt her. At the time, I just passed it off to her state of mind since her brother had died a few days before on Christmas Eve, but I do wonder if she had early signs of the disease at that time. A car ride with her the summer before was downright scarey and I vowed I would never ride with her again. Living in two different states, her day to day actions I really was not aware of. I will always wonder what the future would have been if she had not left this world so soon.

        I really do think there are deep patterns of who a person is that even with the disease, still remain as a core of the personality they had. So many of the answers lie inside of minds with a clear division line between being present.

        My grandmother was said to have dementia at the end of her life and would be restrained to the bed in a nursing home. That part of her life I could not bring myself to witness at the time. The strength you and others I have known since that time in caring for the elders I applaud. I would still like to find another person to work with here locally who has the disease, just not an easy task unless you find a family who has a member and is accepting. The mind is an incredible facilitator in repairing itself, that has been proven by patients who have undergone operations to remove part of the brain, finding what is key might be a part of our future.

  9. avatar mary burdt says:

    Dear Maizie, May the spirit and blessings of all your friends here on wOw find their way to you. You will be in my thoughts and prayers from this day forward. Mary