Misdiagnosis common in early-onset Alzheimer's
May 16th, 2011
04:44 PM ET

Misdiagnosis common in early-onset Alzheimer's

You probably think of Alzheimer's disease in connection with memory problems. But other patterns of behavior that stem from this condition, sometimes even without memory deficiencies, can also be symptoms of the disease. In fact, research has shown that people younger than 65 with early-onset Alzheimer's disease, are more likely to have impairments in visual, behavioral, language and other functioning than memory deficiencies in their first symptoms.

A new study in the journal Neurology suggests that many people with early-onset Alzheimer's do not get a proper diagnosis based on their symptoms. A better solution would be to identify biomarkers, through cerebrospinal fluid or PET scans, that reflect Alzheimer's disease in the brain, said co-author Dr. Jose Luis Molinuevo, of the Hospital Clínic of Barcelona and the Institute of Biomedical Investigation August Pi i Sunyer, in Barcelona, Spain.

The study looked at 40 people whose  symptoms began between ages 46 and 60, and who had died and donated their brains to science. Autopsies revealed that they'd had the pathology of Alzheimer's disease, which affects more than 5 million people in the United States. Medical records showed what their symptoms were and when they began.

Researchers found that 15 patients had atypical symptoms - for instance, no episodic memory impairment at clinical onset. Of these people, 53% had gotten an incorrect clinical diagnosis; the autopsies suggested Alzheimer's disease, but they had gotten misdiagnoses of other neurological disorders, including other forms of dementia.

When these patients received their diagnoses, which was 20 or 30 years before in most cases, many doctors were less aware that Alzheimer's disease could begin so early in life, and wouldn't have necessarily connected these atypical symptoms with Alzheimer's disease, Molinuevo said. Although there is no cure for Alzheimer's, these patients could have received treatments that are specific to the disease and designed to slow the progression of clinical symptoms.

The research is important, and extends previous conclusions about late-onset Alzheimer's to early-onset cases, said Dr. Christiane Reitz, assistant professor of neurology at Columbia University Medical Center, who was not involved in the study

But the research has an underlying problem: It’s unclear whether all those disorders that might look like Alzheimer's are truly separate disorders, or belong to one family.  Reitz is unconvinced that an autopsy could truly distinguish Alzheimer's from all other dementias and neurological disorders involved in the misdiagnoses. It's hard to diagnose Alzheimer's clinically, but we're not at the point where we can definitively define it in autopsy either, she said.

"From a scientific point of view, we really have to understand which pathology leads to which specific symptom," Reitz said.

Recently the Alzheimer's Association and the National Institutes of Health introduced stages of Alzheimer's that would include even mild symptoms.

soundoff (59 Responses)
  1. RoadRunner, Albuquerque, NM

    "...visual, behavioral, and language...deficiencies..."

    What visual deficiencies? Color perception? Depth perception? Blurred vision? What are the behavioral deficiencies? Loss of bowel/bladder control? Bloating, cramping, edema? What are the language deficiencies? Echolalia?
    Stuttering? Poor grammar? There are so many inadequacies in this article, I can't help but wonder if it may have been written by someone suffering from the final stages of Alzheimers.

    May 16, 2011 at 18:24 | Report abuse | Reply
    • Burbank

      True. This article sure didn't say much for how many words it used.

      May 16, 2011 at 19:08 | Report abuse |
    • evoc

      Good for you! I was just thinking what a pathetic article. It provided none of the topics mentioned at the beginning. Very uninformative. Maybe the author has early stage something or other.

      May 16, 2011 at 20:40 | Report abuse |
    • rose

      Yes, I would like to know more about the deficiencies they are talking about. I felt that I did not learn anything from the article. PLEASE, EXPLAIN!!!!

      May 16, 2011 at 20:48 | Report abuse |
    • Mark

      For crying out loud, morons, if you want medical details you need to look somewhere other than cnn.

      May 17, 2011 at 13:58 | Report abuse |
    • Nurse Lisa

      yes – any of the above and even more varied symptoms depending on the earliest sites of the brain most noticeably damaged by the disease. The article didn't promise a laundry list of potential symptoms that could be alzheimers – it rightly said it is common for early disease to be misdiagnosed as something else because often a cluster of symptoms and obvious progression over time are required to make a presumptive diagnosis and historically autopsy findings were the only definitive way to confirm microscopic etiology.

      May 17, 2011 at 14:45 | Report abuse |
  2. Rick

    What's missing here is the benefits an early diagnosis would deliver. Is it the case that medical science could
    delay the onset of the disease or cure it? If not, early diagnosis would seem a tool that only benefits the
    researcher, and punishes the patient by making them ineligible for life insurance, health insurance, and
    quite possible have ramifications for their employment. This article would have been far more relevant and
    topical to a cnn.com audience if these issues were addressed. That a Neurobiology journal puts it audience
    on notice that Alzheimers isn't diagnosed earlier on is a matter of interest to neurobiologists and not the
    rest of us.

    May 16, 2011 at 18:27 | Report abuse | Reply
    • JLS639

      Your confusion is understandable given the article, but this article was not about early diagnosis. It was about early onset Alzheimer's Disease. A small portion (<2%) of Alzheimer's disease begins when the patient is under 65. Those are early onset. Early onset is NOT early diagnosis.

      However, if you want to talk about the benefits of early diagnosis, there are a few drugs and therapies that can slow the progression of Alzheimer's. In a typical situation by the time AD is diagnosed, as many as 90% of the relevant cortical neurons have been lost. By then the drugs and therapies don't do much. If, however, you can catch it early, you can slow the progression of AD a lot more. What animal models of AD do exist all point to the therapies working much better the earlier treatment starts.

      May 16, 2011 at 19:46 | Report abuse |
    • Rick

      JLS639: excellent reply, thank you for the information. The information on the benefits of early detection
      and treatment should have been reasonably included in the article itself, and I certainly hope anyone
      else reading the original text will find your helpful posting.

      May 16, 2011 at 21:01 | Report abuse |
    • hnicgm

      Excellent reply, but not quite factual. There are NO drugs approved to delay the progression of AD. There are 5 drugs approved to treat symptoms of dementia of the Alzheimer's type – 4 cholinesterase inhibitors (donepezil, rivastigmine, galantamine, and tacrine) and 1 NMDA receptor antagonist (memantine).

      Several drugs are in development with an aim for slowing of Alzheimer's disease progression. The most researched hypothesis is that treating patients early on, when they have detectable signs that the brain pathology is changing, but before symptoms dementia develops will be most beneficial for slowing AD progression.

      I think the point of the CNN article (mind you, I haven't yet read the Neurology article) is to get a second opinion.

      May 16, 2011 at 22:23 | Report abuse |
  3. steve

    why dont they get off their butts and cure or effectively treatt this thing

    May 16, 2011 at 19:06 | Report abuse | Reply
    • Sarah

      Research takes a lot of funding. Currently, Alzheimer's disease research is funded at about $500 million per year, compared to cancer which is funded into the many billions of dollars (I was trying to find the exact number but cannot put my hands on it. I believe it is $6 billion, but I apologize if that is wrong). For every $28,000 we spend on care through Medicare and Medicaid for people with AD, we spend only $100 on research. Until we start funding the research appropriately, the steps are going to remain small.

      May 17, 2011 at 10:55 | Report abuse |
    • tony

      I spent 3 years of my life trying to find someone who would study my recovery case. What I discovered is that there is absolutely no interest whatsoever in finding a solution that is not aligned with the drug industry, since it is the drug industry that for the most part funds a lot of this worthless research.

      For those looking for some signs, here is what I experienced:

      1. You have difficulty standing steady on either leg, it doesn't matter, but just a simple balance test is a good start.
      2. You suffer dizziness with just a small amount of spinning around
      3. I suffered from CLL which can cause mini strokes with dementia setting in over time. So check for this blood disorder.
      4. Sleep apnea deprives the brain of oxygen which certainly can cause a host of neurological problems. Have a sleep study done.

      May 17, 2011 at 23:17 | Report abuse |
  4. Hal

    For a person that is seeking information on this insidious disease, this article is a colossal failure.

    May 16, 2011 at 19:30 | Report abuse | Reply
  5. Hal

    cx: make that "who is seeking information...."

    May 16, 2011 at 19:31 | Report abuse | Reply
  6. Crazyfreddy

    Joke on it's not like they're gonna remember.


    May 16, 2011 at 19:54 | Report abuse | Reply
    • mrsbsy

      As a wife of a man who is only 58 yrs. old and father to 5 children all under the age of 16..and diagnosed with dementia/alzheimers........."NOT FUNNY!"

      May 17, 2011 at 08:34 | Report abuse |
  7. chris cook

    This article is too long for an Alzheimer's patient. I don't even have Alzheimer's and I couldn't remember the beginning of the article by the time I had reached the end.

    May 16, 2011 at 19:58 | Report abuse | Reply
  8. Brian

    I will resist the temptation to reply to the few flippant comments seen above in an individual manner, and simply state that I don't want to make assumptions, but I would be very surprised if the people writing the above posts had seen a loved one lose dignity, relationships, memory, and ultimately, life as a result of this horrible disease.

    I agree that articles should be as informative and relevant as possible, but Alzheimer's Disease is still one about which many people are ignorant. It doesn't have the exposure of cancer or heart disease, and it is still imporant to get basic information out to the general public.

    There may have been things that this article could have presented better, but the important point is that Alzheimer's Disease doesn't always present with memory-related symptoms. Raising awareness about the visual, behavioral, language, etc., symptoms could change the way we think about this disease and lead to earlier testing, earlier diagnosis, and earlier initiation of progression-slowing medications (it's true there is no cure yet, but not because the researchers are sitting on their butts), and prolongation of quality of life. The point is that this is not just a disease of the elderly like most people think, but that people in their 40's can begin developing it, and could go many years before the overt signs and symptoms are present....years during which they could have begun treatment (especially because the younger onset usually has a more rapid and severe course).

    May 16, 2011 at 20:02 | Report abuse | Reply
    • rose

      Well... my mother just died a month ago from this HORRIFIC disease after 11 years of suffering. I can write 20 books about this disease and everything related and since it is in my genes I would like to know as much as I can about it. Memory problems are the most obvious but I agree that other issues arise before like depresion, isolation from friends and activities, loss of smell, etc. etc. I don't care if they call it Alzheimer's or senility or whatever. Most people say that if you catch it early you can delay the progression of AD with medication. I would say that it is a BIG MISTAKE!!!! That is what I did and because of that my mother suffered many years with contractures, skin infections, rashes, blisters, respiratory infections, constipation, neumonia, blood clots... If I get AD I would like to die as soon as I can and not have to go through all of these. I would not like to see my famliy dealing with me dying a slow death.

      May 16, 2011 at 21:12 | Report abuse |
    • mrsbsy

      Well put Brian. My husband was actually 57 years old when we noticed some things were just not right with him. So many test we put him through and so many doctors. Now we live day by day. It is very hard on myself and my kids..but doublely hard on my husband whom doesn't understand what is happening to him and why.

      May 17, 2011 at 11:19 | Report abuse |
  9. Big~Smelly~Tuna

    Caused by pollution.

    May 16, 2011 at 20:17 | Report abuse | Reply
  10. Toxins in Food, Air, Water

    What one might ASSUME are Alzheimer's "early symptoms" and brain fog is also caused by parasites in food or water or air, metal poisoning of lead and mercury, black mold toxins, pharma drug side effects or allergy, and many other infectious diseases like Candida. What MDs should do is a BLOOD TEST for all possible infectious diseases and then they will know if it really is Alzheimer's and also this might prevent excessive diagnosis of an incurable disease – even better what if AD is just an infection in the brain that money grubbing MDs and big pharma drug companies refuse to accept as infectious diseases are highly curable!

    May 16, 2011 at 20:30 | Report abuse | Reply
  11. Lo

    Most people in the western world are sensitive to gluten and gluten intolerance inhibits the absorption of vitamin/hormone D and B12, among other things. Over time, say twenty, thirty, forty, fifty years, your brain feels the effects and voila, you're likely to eventually be diagnosed with Alzheimer's. Best way to prevent Alzheimer's is to not eat processed foods (bread, cake, cookies, etc.) because it's all crap anyway and has little to any nutrient value. Just sayin'

    May 16, 2011 at 21:45 | Report abuse | Reply
  12. Lo

    RE: Toxins in Food, Air, Water

    You forgot to name borrelia burgdorferi AKA Lyme Disease!! But I'm feeling you... all the plastics in our foods and water we drink, heavy metals in our sunscreens, vaccines, seafood, and numerous parasites, all add up to stuff like Alzheimer's, Multiple Sclerosis, ALS, Lupus, etc.

    May 16, 2011 at 21:50 | Report abuse | Reply
  13. jdoe

    Until they come out with decent treatment or cure, all this is just meaningless talk that serves to create anxiety in people rather than help with anything. The diagnosis is imprecise at best. At this time there is no credible treatment that even slows down the disease, let alone stop it. What America needs to do is find ways to ease the emotional and financial burden of the families of the diagnosed. But hey, that's not what the land of "dog eat dog" is all about.

    May 16, 2011 at 22:54 | Report abuse | Reply
  14. Julie

    My mom was 51 and died at 68. Very long illness. Very painful. First signs for her – she couldn't put on her bra. Then she said she couldn't remember how to get to her weekly work meeting. Another sign for her was she became paranoid about using steep stairs or escalators.

    May 17, 2011 at 02:55 | Report abuse | Reply
  15. JehseaLynn

    @ROAD RUNNER, Bravo! You summed up my frustration with this "article" perfectly! I searched it twice after reading it, looking for elucidation of the symptoms of early-onset Alzheimer's, but came up empty. I followed the links in the text with the same result. Fearing I might HAVE it, I began to panic – then I remembered I was reading a CNN non-article. WHEW! Dodged a bullet there! Seriously, CNN, *please* hire people who know how to gather, compose, and disseminate, topical information of substance through the written word. PLEASE.

    May 17, 2011 at 05:34 | Report abuse | Reply
  16. mrsbsy

    My husband and I lost a daughter to SIDS (an unknown baby killer). Now at 58 he is diagnosed with early onset dementia/alzheimers...and it is a disease much like SIDS they just don't know! A lot of guessing. What I do know is since my husband became ill (as I call it) he is not the same man I married. It is hard to watch him struggle with daily decisions and daily life and very hard for our 5 children (ages 15, 14, 13, 13 and 12) to understand what is going on with their dad. For me I do a lot of crying silently..29 years of marriage..to a man I adore. We will stick by him through all the ups and downs and pray for a cure

    May 17, 2011 at 08:45 | Report abuse | Reply
  17. Katie

    Alzheimers is a terrible thing, and it's my experience that knowing early only makes it worse as everyone gets crazy over every little thing – is she really angry because she's justified or is this a mood swing over something that isn't worth paying attention to? Did she forget where her keys are because she's stressed or did she Forget and we have to watch her more carefully now? Did she ask you to repeat something because she couldn't hear you, because she wasn't listening, or because she Forgot you said it? Did she mix up her words because she's just having that kind of a moment or is she losing her ability for eloquence? One thing is certain, no matter what stage of Alzheimers, everyone has to remember to live in the present, in the right here, right now moment, and treasure it, no matter how hard.

    May 17, 2011 at 10:39 | Report abuse | Reply
  18. Jimbird3974

    I'll bet the author never tried taking an early onset Alzheimer patient to a doctor. I spent two years fighting with my wife and doctors over her condition. My wife fought like crazy every time I attempted to bring her and the doctors never wanted to accept a 59 year old having Alzheimer. They thought I was crazy and her problem had something to do with menopause.

    May 17, 2011 at 12:58 | Report abuse | Reply
    • mrsbsy

      Jim, my husband was 57 years old to when I first started taking him to the doctors because something was not right. They thought I was a overbearing wife I think at first! But when you live with a person day in and day out, we know them better then anyone! It fianlly took the right doctor that sat down and listened to me to get the ball rolling and after a year the diagnosis came back on early onset dementia/alzheimers. My husband never talked nasty or mean to me in the 29 years we have been married and in the beginning he was mean and even popped me in the mouth one evening..so the hardest thing I ever had to do in my life was have him committed and from there we have started to learn to live a new life style.

      May 17, 2011 at 13:09 | Report abuse |
  19. Nurse Lisa

    The article didn't promise to answer all questions people – try the alzheimers association (alz . org or theforgetting) and other similar resources which would be better than an article to review the gigantic array of symptoms that vary from person to person depending on where the damage is most pronounced in the beginning – for some it may be language symptoms though they might not fit any "usual" pattern, for others visual or emotional or behavioral symptoms may show the first signs of change that doesn't seem right to self or others. Because for example incontinence can be caused by many different conditions, even an experienced clinician is unlikely to see a patient with new incontinence and guess Alheimer's disease is the cause before investigating other more common causes first. Sure a spouse "not paying attention" or "not remembering what wifey said" may be Alzheimers, but it could be a hearing problem from his years working in manufacturing or playing in a rock band. A hearing problem is easier to diagnose, cheaper to test for, and more commonly diagnosed – if it looks like a duck, you don't leap to platypus right away.

    May 17, 2011 at 14:36 | Report abuse | Reply
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    May 17, 2011 at 15:08 | Report abuse | Reply
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