Half of Alzheimer's cases misdiagnosed
February 23rd, 2011
04:10 PM ET

Half of Alzheimer's cases misdiagnosed

Roughly half of the people who are told they have Alzheimer's disease may in fact have other forms of dementia that produce similar symptoms, according to a new study.

Doctors have known for some time that the confusion and memory loss caused by the brain lesions associated with Alzheimer's can also be caused by other types of brain changes, such as tissue damage stemming from strokes. The study suggests that it may be even harder than previously thought to identify the source of dementia while a patient is still alive, says lead researcher Lon White, M.D.

Health.com: 25 signs and symptoms of Alzheimer's Disease

"There are at least five different kinds of important lesions which can produce a picture that looks like Alzheimer's," says White, a professor of geriatric medicine at the University of Hawaii in Honolulu. "Each of those five kinds of lesions is apparently driven by its own pathologic process, and having one doesn't protect you from having others. All are independent and all are increasing with age."

White and his colleagues performed brain autopsies—the only surefire way of diagnosing Alzheimer's—on more than 400 elderly Japanese-American men. Only about half of those who had a diagnosis of Alzheimer's before death had the brain plaques that signal the disease. The dementia in the other half appeared to have been caused by abnormal protein deposits (known as Lewy bodies), stroke-related tissue death (microinfarcts), cell damage, or some combination thereof.

The researchers have since completed another 400 or so autopsies with similar results, and will present their findings in April at the annual meeting of the American Academy of Neurology. Unlike studies published in medical journals, these findings are still preliminary and have yet to be thoroughly vetted by other experts in the field.

Health.com: 9 foods that may help save your memory

An Alzheimer's misdiagnosis doesn't have immediate consequences for the patient because no treatments exist that can stop the steady progression of the disease. And the drugs that, in some people, help slow Alzheimer's or make it more tolerable appear to work for other types of dementia, White says.

Patients and their families can nevertheless benefit from an early and accurate diagnosis. Ruling out other forms of dementia may help relatives plan for future care and determine their own risk for Alzheimer's, for instance.

Accurately diagnosing Alzheimer's is even more critical for research on potential treatments. Without knowing precisely who has Alzheimer's, pharmaceutical companies that have been developing new drugs "are not going to be able to see a true assessment of how effective their drug is," White says.

Health.com: Should I take medicine for Alzheimer's disease?

Some promising advances in diagnosis have been made recently. A study published last year found that spinal fluid tests can predict Alzheimer's with a high degree of accuracy, and the Food and Drug Administration is currently weighing the approval of a brain scan that uses dye to highlight the plaques characteristic of Alzheimer's. The reliability of these methods needs to be confirmed, however.

"Everybody knows we need to do a better job of diagnosing," says Maria Carrillo, Ph.D., the senior director of medical and scientific relations at the Alzheimer's Association, a research and advocacy organization based in Chicago. "We are all trying to make that diagnosis better, earlier, faster. All of those things are currently under way in terms of research study."

Copyright Health Magazine 2011

soundoff (208 Responses)
  1. Fred

    I do not understand the importance of this article. My mother had alzheimer's and it is not so important to say exactly what is the name of the problem, but recognizing there are problems. Dementia is dementia and who cares what the actual source is. All people with dementia need special care.

    February 23, 2011 at 16:40 | Report abuse | Reply
    • Mike

      Alzheimer’s is not just dementia and that is the problem, a person can live comfortable life without remembering the date but Alzheimer’s also means lose of cognition. Once a patient cannot take a shower by himself or needs help in the bathroom it becomes ugly.

      February 23, 2011 at 16:51 | Report abuse |
    • not demented yet

      I feel for your family. The reason accurate diagnosis matters is 1) is your mother likely to respond to current AD drugs (which only treat symptoms, not the underlying pathology) and 2) if you are going to spend the dollars and put human subjects at risk in a drug trial, then it's both inefficient and morally wrong have 50% contamination of non-AD demential patients in your dementia treatment pool; if the biological substrate of half your subjects is misidentified then you will underestimate any real treatment effect for the targeted substrate (inefficient) and subjecting someone to drugs that are not even plausibly appropriate for their condition is unacceptable (wrong). AD diagnosis efficiency can vary widely from place to place - that's not in any way intended as a cut on the Honolulu Aging Study.

      February 23, 2011 at 16:57 | Report abuse |
    • Steve

      Some forms of dementia are treated differently, so It is good to know the cause. Treatments may diverge even more in the future, just like different forms of cancer respond differently to various treatments.

      February 23, 2011 at 17:01 | Report abuse |
    • Jill American

      My Mother was diagnosed but then later was found to have a heart arithmia (sic) that was causing loss of oxygen to the brain via seizures or tia type activity (sometime happened unnoticed). The loss of oxygen caused the dimentia.

      February 23, 2011 at 17:19 | Report abuse |
    • Bill

      You better go back and re-read the article. If someone is diagnosed with Alzheimer and is being treated for Alzheimer, yet that is not what they have – that is a major problem. They might be on the wrong drugs. The family might also be told the person will never get better, only worse. If it is a stroke, and the person is on a different drug, they might get better.

      Also, I know for a fact that elderly people can become so profoundly depressed that they appear to have dementia and in every way shape and form act like dementia patients.

      My main concern is you cannot actually diagnosis Alzheimer until you autopsy the brain, yet every day people get this diagnosis. It is possible your mother did not have Alzheimer, unless an autopsy found was done to confirm the diagnosis.

      February 23, 2011 at 17:42 | Report abuse |
    • Jenrose

      Given how extraordinarily expensive some dementia drugs are, and that giving the wrong drug can worsen symptoms in some people, it's very important to have a good idea which dementia you're dealing with. Lewy Body Dementia and Alzheimer's are similar, but not "twins". And what might help prevent one doesn't necessarily help prevent the other.

      February 23, 2011 at 18:01 | Report abuse |
    • chickyd

      The importance is to inform people that there are different types of dementia. Dementia is the umbrella term for cognitive impairment and includes Alzheimer's, dementia (as we know it), and Parkinson's. There are many forms of the disease that have different prognosis. My father has Primary Progressive Aphasia w/Parkinson's. Alzheimer's drugs made his cognitive impairment worse. It took us over 2 years to diagnose since he wasn't typical Alzheimer characteristic, so it's also important for docs to understand there are different kinds of mental impairment (he was diagnosed after we told the doc he was getting a PET scan end of story) and to use other diagnostic tools other than MRI (which was negative). It's nice to see that more research is being done, especially since there's a chance of inheriting such disease. I'd like to know what form I had in order to plan for the future. Yes the end result is the same, but the disease course is different depending on specific disease.

      February 23, 2011 at 18:47 | Report abuse |
    • mike

      Fred you are right all people with dementia need special care, but the article is making the point unless we know which specific dementia and cause we cannot focus in and give the special care that person needs, even though breakthroughs have occurred with Alzheimer's other dementia sources wouldn't respond to that inappropriate medicines

      February 23, 2011 at 18:55 | Report abuse |
    • Michael

      As a doctor, how would you like it if you came to me with a cough and I told you that you had pneumonia, but I didn't bother to find out what KIND of pneumonia. Viral, bacterial, fungal etc...they are all treated differently. It is important to know what we are treating so we can refine medical theraputics properly for each patient.

      February 23, 2011 at 19:16 | Report abuse |
    • Richard C

      Fred, read the antepenultimate paragraph.

      February 23, 2011 at 20:07 | Report abuse |
    • E.P.

      I *DO* understand the importance of this article; I lived it with my mother. At 78, when she went to be on Sunday night, she was perfectly normal, with the mental accuity of a 35-year-old. The next day she didn't know who I was, where she was, and asked for family members who'd been deceased for decades. Even though she was diagnosed as having a stroke, I had to argue vehemently with a doctor, a physical therapist and a neurologist that it was by no stretch of the imagination Alzheimer's. But of course, I'd only known the woman for some 40 years, and they'd just seen her for 20 minutes, so of course they knew better. And this was in Boston, where you can't swing a dead cat without hitting an Ivy League M.D. They were all no help and gave up on her immediately. I wish I had been able to help my mother, but after beating my head against the wall of the medical profession's cognitive dissonance, I had to give up to save my own health and job. I'd give up a body part to help her. Even just a little. The same woman who followed the news, maintained her own investment portfolios, taught Sunday School and volunteered now can't remember the way to the bathroom.

      February 24, 2011 at 15:10 | Report abuse |
    • Chris

      Fred, my take is that the importance of this article is to give other family members hope. Because of the role genetics can play in Alzheimers, it can actually be relieiving to a family member whose parent has a form of dementia but one that has no familial connection. It doesn't change the fact that all dementias are terrible, don't get me wrong.

      February 24, 2011 at 15:17 | Report abuse |
    • Jaime

      It is important to find out the true cause of dementia because if we are going to find therapies to work for these patients then they will need the correct diagnosis. Imagine if we had drugs that actually worked for Alzheimers, but not for other types of dementia these families would waste money on therapies that dont even work. A correct diagnosis is crucial. I as a family who had a close relative that had a type of dementia (not alzheimers) appreciate a correct diagnosis because then I and my family know our future risk for the disease and can pay attention to any advancements in the future for this partucular disease.

      February 24, 2011 at 15:27 | Report abuse |
    • alexander kraft

      Hi Fred. Sorry your mother had Alzheimer's. Recognizing the problem and identifying, properly diagnosing the problem, are equally important. For example, a probable Alzheimer's is treated differently than a vascular dementia (the top 2 dementias), one that is related to stroke or poor vascular health for example. Also, Alz risk is often inherited but Vascular is not, but both giving relatives important health information how they should be living their lives.

      February 25, 2011 at 08:10 | Report abuse |
    • ntb2011

      Neurological disorders and diseases get tricky. Alzheimer's doesn't have a definite diagnosis until an autopsy of the brain can be performed – then the plaques and tangles as well as the shrinkage of the brain can be seen.

      All diseases need to be diagnosed correctly in order to be treated most effectively. If one had an infection – it would be best for the doctor to determine whether it is bacterial or viral in order to treat it. We wouldn't treat a bacterial infection with an antiviral, or vise versa; because it wouldn't be the most logical or effective treatment, and the hope of getting better is greatly diminished without the correct treatment.

      February 25, 2011 at 09:33 | Report abuse |
    • Thomas

      One issue is that proper diagnosis of say Lewy Body Dementia might alter a doctors course of care – if there is a buildup in the brain of substances rather than loss in cognition due to say a lesion a doctor might choose a local pain killer rather than a drug like morphine - which works by mimicking a brain chemistry - when treating a patient for certian types of pain i.e. it stands to reason that flooding a clogged up brain with chemicals might be a poor choice if a less risky alternative exists. Proper diagnosis is important.

      February 25, 2011 at 15:39 | Report abuse |
    • liz

      My mom had vascular dementia. Had my father understood that it was NOT Alzheimers he might have pushed her to stay active sooner – stay physically active, do puzzles, quit drinking, quit smoking. We would have had her longer. I blame inadequate follow up on her physician's part – and myself for being 3,000 miles away during the early years, and trusting that what my dad understood was accurate.

      So yeah, an accurate diagnosis (and open communication) can make a world of difference.

      February 25, 2011 at 18:46 | Report abuse |
    • Kathleen Medica

      That is not so. If someone has atrial fibrillation, they are more prone to throwing clots, large and small, and the small ones may lead to mini brain infarcts...over time dementia. This is not Alzheimers! Also, this may not be the kind of dementia that is genetic...however, if your family is prone to developing atrial fib, you may get the multi-infarct dementia as well

      March 3, 2011 at 10:21 | Report abuse |
  2. Turp Griswald

    Pretty much a story with no useful information.

    February 23, 2011 at 16:45 | Report abuse | Reply
    • Jujubeans

      I thought it was very informative and well written. See the post below.

      February 23, 2011 at 17:58 | Report abuse |
  3. Emily

    Fred, you have a point, but as the article states: "Accurately diagnosing Alzheimer's is even more critical for research on potential treatments. Without knowing precisely who has Alzheimer's, pharmaceutical companies that have been developing new drugs 'are not going to be able to see a true assessment of how effective their drug is,' White says."

    Current treatment does not differ much from disease to disease, but proper diagnosis is key in progressing medical research.

    February 23, 2011 at 16:47 | Report abuse | Reply
  4. Mike

    Treating Alzheimer’s disease is a big and profitable industry. Pharmaceutical companies push drugs very aggressively, nursing homes and doctors are making money everybody except for the patient’s family is very happy. Until a new generation of medications is out in the market do not bother to treat the disease, save your money for home care and helping the spouse.

    February 23, 2011 at 16:48 | Report abuse | Reply
    • Sarge

      Mike: You paint with an awfully wide brush. Very few nursing homes are making money. Most of them are not-for-profit.

      February 23, 2011 at 19:41 | Report abuse |
    • Sarge

      If you had an experience with this insidious disease, you would realize that there comes a point when home care is not possible. If you haven't gone through the experience of having a spouse with Alzheimer's or related diseases, I hope you never have to deal with the realities of it.

      February 23, 2011 at 19:44 | Report abuse |
    • icydmd

      I suppose that you have never lived with a person who was diagnosed with Alzheimers. A prescription medication (or several) can alleviate or reduce a plethora of symptoms (anger, anxiety, violence, etc). Certain drugs can also delay the progression of Alzheimers. I can also assure you from firsthand experience, though companies may be earning a pretty penny, families ARE happy... at least happier than they would be with no medication. Medical communities have to be on the same page with respect to diagnoses, causes and contributing factors before a cure is achieved. One step at a time, though.

      February 24, 2011 at 01:29 | Report abuse |
    • CalgarySandy

      What are you, a conspiracy theorist? I doubt there are that many that overcharge. The kind of thing that hits the news is not likely the most accurate. My Mom has AD and lives in a nice facility until she is unable to get around and know who she is and where she is. There is no way this place is gouging people and nor will the place she goes next when she is past all home of being even moderately independent. The new place that she will go to die will also not be gouging us. She is being prepared for that now. I have an uncle and 2 cousins who died of AD and none of the places they were made a bundle off them. I am adopted but my sister was not and is freaking out a bit as she could well get it. Watching someone disappear is heckish. Maybe more work could be done on the genetic side of this. My mom's family is riddled with it.

      February 24, 2011 at 14:18 | Report abuse |
    • E

      There are homes that are in it for profit, they are expensive chain homes and they pay the most for advertising and give the least care. My grandmother was left in a wheel chair for hours in one of these homes and noone noticed when she developed bronchitis in a week. Personal Care homes are smaller and more home like, the right one can make all the difference and usually at a lower price. They are out there, though at times hard to find, and they are wonderful for patients and families.

      February 24, 2011 at 21:45 | Report abuse |
  5. Sarah

    I have MS. And once I was correctly diagnosed – they were able to treat me correctly. That's the case with most health issues. I think the importance of the article relates to the future of diagnosis and treatments. "Accurately diagnosing Alzheimer's is even more critical for research on potential treatments. Without knowing precisely who has Alzheimer's, pharmaceutical companies that have been developing new drugs "are not going to be able to see a true assessment of how effective their drug is," White says."

    February 23, 2011 at 16:53 | Report abuse | Reply
    • Sarge

      MS has no connection with this subject. There is no effective treatment for Alzheimer's, drugs or otherwise.

      February 23, 2011 at 19:45 | Report abuse |
    • Richard C

      Sarge, you totally missed the point.

      February 23, 2011 at 20:15 | Report abuse |
    • icydmd

      Sarge, wrong. There are effective treatments; there are not effective CURES. There are ways to prolong the progression of Alzheimers. And yes, MS can be related to this. There are parallels in issues with diagnostics.

      February 24, 2011 at 01:31 | Report abuse |
    • NoNewInformation

      Icdmd, I have to question you and agree with Sarge. WHAT effective treatments for dementia??? Maybe several medications HELP - for a few months. Where are families happy??? "Where's the beef?"

      February 24, 2011 at 06:38 | Report abuse |
    • NoNewInformation

      Icdmd, I have to question you and agree with Sarge. WHAT effective treatments for dementia??? Maybe several medications HELP - for a few months. That's not a very effective treatment! Are families happy??? The thought of Aricept and Excelon thrills me! "Where's the beef?"

      February 24, 2011 at 06:41 | Report abuse |
    • CalgarySandy

      MS is also a neurological disorder that nothing could be done about in the past. It mimics other disorders so is difficult to diagnose. It is relevant and proves a ray of hope. Answers or at least partial answers show that things can be understood and treated with research and the participation of doctors and patients. It happens that a medication that is good for one thing turns out to be good for others. Prozac was an antidepressant. Women on it noticed that it got rid of PMS. More neurological disorders.
      If a placebo works, take it. 🙂 Anyway, you said "some" medications. That means that some others may work. Psychiatric medications (neurological) work for some like a miracle and for others they do not work at all. Sometimes it takes a combination of medications and they may stop working. It can take years to find something that works and some people never get any help. MRIs can help to diagnose but not to alleviate. And MRI's are of no value so far in AD.

      February 24, 2011 at 14:28 | Report abuse |
  6. Vickie

    I totally agree with Fred, both of my parents had dementia and properly diagnosed or not it is a horrific diesease and affects the patient as well as the patients family.

    February 23, 2011 at 16:54 | Report abuse | Reply
  7. dean r

    This particular article now speculates that what was normally considered to be a sign of Alzheimers -namely tangles and sticky plaques may actually be a sign of the fight against it.

    February 23, 2011 at 16:56 | Report abuse | Reply
    • not demented yet

      in the AD research community there has been a minority asserting that amyloid is protective for many years. Chicken v. egg is still undecided.

      February 23, 2011 at 18:07 | Report abuse |
  8. Deepshade

    Sadly, those of us who care for people with dementia read every single article that comes down the pike, hoping for some content. This is just another one that will snare readers like us. It has no useful information. Couldn't someone vet these pieces to be sure they actually say something?

    February 23, 2011 at 16:56 | Report abuse | Reply
    • Jujubeans

      It states proper diagnosis is important in developing effective treatments. You want them to vet it to see if this article will help Joe Blow treat his loved one?

      February 23, 2011 at 18:01 | Report abuse |
    • Sarge

      You couldn't be more correct. I'd like to have a dollar for every time someone has approached me with a new "cure" for my wife's condition. I've heard them all. I had vowed to read no more of this stories; I wish I had held to that vow when I spotted this useless article.

      February 23, 2011 at 19:48 | Report abuse |
    • NoNewInformation

      I totally agree with you and Sarge. A lot of time and money has gone into dementia research; much more progress should be being made. I, too, "read every article coming down the pike," hoping against hope for new information. It's seems to have ceased coming, and too many precious people are suffering from the lack of it. "Where's the beef???"

      February 23, 2011 at 21:13 | Report abuse |
  9. Louise

    The drugs available to dementia patients are very expensive, even the generics. If it is true that the tests now available cannot determine Alzheimers from other dementia, then why go through these very expensive procedures? It is usually Medicare paying the bill. We all know that story.

    February 23, 2011 at 16:56 | Report abuse | Reply
    • CalgarySandy

      We go through it for the sake of the victim and the loved ones. Most diseases had to be studied and researched with clinical trials. This is the norm. Your suggestion that it is a waste of time is ludicrous and cruel. One in five people is mentally ill. Should we give up because we do not know exactly what causes it and what will help? It is more likely that more money is needed. As the boomers age there is going to be an epidemic of AD. It would be cheaper to find a way to cope with it now rather than latter. It is also important that those who do not know anything are taught about it. Ultimately, we go through it for the sake of everyone. Finding help for this may lead to help with other recalcitrant disorders.

      February 24, 2011 at 14:39 | Report abuse |
  10. Justin

    The findings of this study are only irrelevant if you don't believe there will ever be advancements in treatment for the various causes of dementia. Right now, no, there is no truly effective treatment for Alzheimer's, but in the future the medical care will be of much higher quality if the disease can be accurately diagnosed. Dementia is not dementia (amyloid plague buildup in Alzheimer's is completely different biochemically from tissue hypoxia in cases of stroke), and if the diseases that cause it are ever going to be treated effectively and/or cured, the differences between them MUST be identified. Very interesting study, although it covers a very limited demographic.

    February 23, 2011 at 17:00 | Report abuse | Reply
    • Sarge

      Then let's hold off on these useless stories until there is an effective treatment.

      February 23, 2011 at 19:50 | Report abuse |
    • NoNewInformation

      You tell 'em, Sarge/

      February 23, 2011 at 21:34 | Report abuse |
    • Crystal

      This article wasn't useless to me. Fortunalely, at this time I do not have a family member with the disease but may sometime in the future. If it does happen I will know there is a 50% chance that it could be misdiagnosed and to question and observe symptoms more closely than if I thought the diagnosis couldn't be challenged. I'm also happy to know that research is continuing on this disease and hasn't been given up on.

      February 24, 2011 at 15:40 | Report abuse |
  11. MannyHM

    One of the causes of dementia is Alzheimer's disease. Do you really want to be sure ? Before the person with dementia dies, arrange for his or her brain to be donated to the nearest medical college to be examined by a neuropathologist. Request for a copy of the brain histopathology or microscopic exam. You hit two birds with one stone. 1. The surest way of establishing a diagnosis of Alzheimer's disease. 2. The brain tissue donated is now available for study by scientists world wide. Inquire about cost involved if any.

    February 23, 2011 at 17:09 | Report abuse | Reply
  12. Walter

    I'm constantly amazed with articles that tout the idea that children of Alzheimer's victims would want to find out if they are prone to getting the disease. Why bother, when there's nothing you can do about it? This seems to be a rare case where ignorance may indeed be bliss.

    February 23, 2011 at 17:11 | Report abuse | Reply
    • Lucy

      I certainly wouldn't want that info hanging over my head. My Dad (89) has had Alzheimer's (or dementia) for the last 9 years. My sister's 50 and I'm 60. From watching the progress of the disease and seeing what's becoming of our poor Dad we've both said to each other "If I show signs of the disease, just drive me off a cliff. I absolutely do not want to live like that." It's miserable for my Dad (though thank heaven's he's very easygoing and just kind of goes with the flow), my Mom most of all, and us "kids" since he doesn't know who we are any more–just thinks we're good friends. For these past years, we've just had to watch the person we knew vanish in plain sight and there's no way to stop it. Alzheimer's or dementia–it's a horrid, horrid disease.

      February 23, 2011 at 17:41 | Report abuse |
    • John

      There are steps that can be taken to reduce the likelihood of getting Alzheimer's. proper diet, exercise, and cognitive activity have all been shown to reduce your risk. Taking classes later in life, or learning a second language can help. If you knew you were at higher risk, wouldn't you take immediate and permanent steps to stave off the disease?

      Here – read this Wikipedia article – http://en.wikipedia.org/wiki/Alzheimer%27s#Prevention – follow the links, and by learning something new, reduce your own risk!

      February 23, 2011 at 17:48 | Report abuse |
    • Sarge

      Note to John below whose comment didn't allow for replies. All these purported prevention steps (including learning a second language) have proven to be bogus (in just the last few months) and only give people false hope.

      February 23, 2011 at 19:54 | Report abuse |
    • NoNewInformation

      Sarge, I agree again with your response to John. Exercise is extremely beneficial, and any semi-educated individual is aware of that. But leading exercises three times a week for 15 – 20 years certainly didn't prevent my Mom from being diagnosed with dementia. In her case, the most that can be said for the years and years of exercise is that possibly it delayed its onset. I think the same thing can be said for more education. While they're both valuable, I don't really think we know all that much about their role in delayling/preventing dementia.

      February 23, 2011 at 21:47 | Report abuse |
    • zephyrous

      The evidence is pretty clear that cognitive excercise, like crossword puzzles, second languages, basically many things that make you use your brain more do delay the onset of dementia. However, once the symptoms start to appear the disease progresses faster. An analogy would be building up soil on a hill you are rolling down. You can stay at higher elevation longer but instead of gradually rolling down the hill you stay elevated longer but then fall off the cliff, or more accurately roll down a steeper hill.

      February 23, 2011 at 21:55 | Report abuse |
  13. abby

    "Dementia" covers a wide range of disorders of which Alzheimer's is only one. A complex issue, not easily diagnosed or treated. The sad thing is what happens to people and their families when dementia is NOT detected.

    February 23, 2011 at 17:16 | Report abuse | Reply
  14. runnerinaugust

    What ever the correct diagnosis/name, I pray a cure can be found for it. I just lost my Father to Alzheimer's and my Mother is currently living with the disease. It was very difficult to watch my Father starve himself to death because he forgot how to chew, eat, swallow.

    February 23, 2011 at 17:25 | Report abuse | Reply
  15. CPT Wayne

    I posted a previous reply, where is it? Basicly, this article leaves out some very important distinctions between Alzheimer's disease and Louis Body Disease (LBD). Alzheimer Disease is often misdiagnosed when, in fact, it is LBD. This can have lethal consequences.

    February 23, 2011 at 17:26 | Report abuse | Reply
    • Karen

      Alzheimer's is often misdiagnosed when someone is suffering from Hydrocephalus (which can be easily managed if caught in time). I created a post about this but it isn't showing up. IF YOU SUSPECT ALZHEIMERS, PLEASE HAVE YOUR LOVED ONE CHECKED FOR HYDROCEPHALUS.

      February 23, 2011 at 17:34 | Report abuse |
    • Sarge

      The correct name of the disease to which you refer is Lewy Body disease. It may be a different disease, but there is no treatment for it either. And the end results are the same as Alzheimer's.

      February 23, 2011 at 19:58 | Report abuse |
  16. Michael

    Like the article said, Alzheimer's can't be confirmed until autopsy, so of course it's going to be misdiagnosed sometimes.

    February 23, 2011 at 17:33 | Report abuse | Reply
  17. CPT Wayne

    Correction: Lewy Body Disease (LBD) may be misdiagnosed as Alzheimer Disease (AD). LBD has early onset Parkinson Disease where the hand shakes while standing, but not while sitting. In AD, the hand will shake while sitting too. Also, in LBD, there may be distinct dreams of falling, like reaching for a tree branch and missing. When LBD patients become disoriented, it will last for a few days or more, maybe even a week. In AD, it usually lasts only a day or two or a few hours. Parkinsons disease in AD usually developes several years after diagnosis. In LBD, it is just a few months. If you give medication for an AD patient to a LBD patient, you may shorten their lifespan by 50% or so, it they survive it. I am not a physician, but these distinctions are important. Check out the difference on google between AD and LBD. I hope this is helping to some folks.

    February 23, 2011 at 17:37 | Report abuse | Reply
    • evan

      "If you give medication for an AD patient to a LBD patient, you may shorten their lifespan by 50% or so" .. where did you hear this? read my comment below, this is xactly what happened to my father with parkinsons, they gave him ARICEPT 20 months + to his onset of severe dementia, are u saying that the drug most likely sped up this dementing process and led to his death?

      February 23, 2011 at 17:53 | Report abuse |
    • Sarge

      You are obviously not a physician and certainly not one trained in diseases of the aged. Your information is absolutely bogus. Your comment on hand shaking of Alzheimer's patients is just one of your errors. That iis not true in all cases.

      February 23, 2011 at 20:03 | Report abuse |
    • Daradar

      My brother, who was diagnosed with early onset Alzheimer's at age 53, had a medication reaction to two of his Alzheimer's medications in the first several days of administration. The reaction was classic for people with Lewy Body Dementia. His diagnosis was changed. His wife was told the reaction caused by giving a Lew Body Dementia patient those types of Alzheimer's medications would cause a rapid decline leading to his death. She was told nothing would be able to stop the severe decline. Despite all attempts to reverse the damage caused by the medication reaction, he was dead in 8 weeks at age 63. So, it is very true that certain dementia medications are deadly for patients with Lewy Body Dementia.

      February 24, 2011 at 12:17 | Report abuse |
    • Sherri

      Evan, others: Just sharing my experience . . . Neither Alzheimer's nor Lewy Body Dementia have a perfect set of symptoms to point to–I wish the timing of hand shaking or other symptoms would give it away. Nor have I ever heard of Alzheimer's medicine hastening the demise of someone with the other diagnosis. In truth, Alzheimer's co-exists with Lewy Body Dementia very often.

      However, there is a CRUEL irony regarding the medication for Lewy Body Dementia, which appears to combine cognitive symptoms of Alzheimer's with muscle rigidity of Parkinson's. Medicines that stabilize cognition could make muscle rigidity worse, and dopamine and other Parkinson's medicine could make cognition symptoms worse. My mother has had Lewy Body Dementia for years. Unfortunately, neither set of medications has worked for my mom. She is so beautiful but can neither communicate nor move. But what a beauty.

      February 24, 2011 at 12:36 | Report abuse |
    • Sherri

      I wanted to add that we continue to give my mom Aricept and Namenda, opting for cognition over rigidity. As I said above, neither seemed effective, but my mother still seems to know who we are and we have had our diagnosis since 2002. I just don't want people to think that Alzheimer's medicine causes the demise of Lewy Body patients. Everyone's experience is different–that's the problem!

      February 24, 2011 at 12:41 | Report abuse |
  18. Jean

    My mom started to decline cognitively many years ago in what I believe was related to surgery with anesthesia. The default diagnosis for any type of cognitive impairment seems to be Alzheimer's or that it will progress towards Alzheimer’s. No other types of dementia were every discussed with us. lt was difficult to find a primary doctor to take her health seriously and to coordinate her care. For years she's wanted to know what's wrong with her. This summer, we found a new neurologist and neuropsychologist who listened to us and she was diagnosed with Lewy Body dementia. Now we know the risks of anesthesia. Now we know there is medicine that can help with the rigidity. Now we know that people with this type of dementia have symptoms that fluctuate and that she wasn't "faking it". Now we know many of her concerns (loss of smell, sleeping issues, rigidity, lack of initiative) were early indicators of Lewy Body dementia. I feel like contacting her former doctors so they could learn from our experience.

    February 23, 2011 at 17:37 | Report abuse | Reply
    • Mike

      YES – the very same thing happened to my dad. He was fine before Oprah's favorite pet, Dr. Mehmet Oz, performed surgery, and he came out demented. Oz never bothered checking on his recovery, and the psychiatrists at the hospital told us it had to be advanced Alzheimer's, and that dad must have been covering the symptoms prior to the surgery. Pure rubbish!
      We never did discover the cause of the dementia, which became so severe at one point that he was practically catatonic, but with a lot of love, therapy, and aricept (which truly worked wonders in his case) he was eventually able to come home from the nursing home to which we had been forced to commit him, and was lucid (with a good 80% of his cognitive ability recovered) for the next ten years, until his death at age 89.

      All dementias are NOT alike. Those of you throwing up your hands and saying this news is meaningless should be ashamed of yourselves. How can you write off your loved ones like that??

      February 23, 2011 at 19:04 | Report abuse |
    • NoNewInformation

      Mike, who is "throwing up your hands and saying this news is meaningless?" Who is "writing off your loved ones like that?? I'm trying to hold down a full-time job, fighting court battles with two brothers to try to get Mom the medical care she needs, and working with Mom every day of the week, seven days of the week. You have to recognize the symptoms of caregiver stress and frustration with the lack of information, progress, and support. I just say again, "Where'e the beef???" Articles with no new information are a waste of time for people caring for people afflicted with this horrible disease.

      February 23, 2011 at 22:03 | Report abuse |
    • Summer Breeze

      Mike, is it possible your father had an unexpected response to the anasthesia, and you're taking your anger about this side-effect out on the doctor? Doctors won't know about any negative effects from their surgeries unless you contact and inform them. Exactly how much do you expect them to follow-up with every single patient? I'm sure most doctors will be happy to discuss your concerns with you, if you make a follow-up appointment and bring up your concerns at the time they are happening.

      February 24, 2011 at 05:59 | Report abuse |
  19. RMC

    Many people use this as the excuse for putting hteir parent(s) in a home like my sisters did only to find out it was medication causing the symptoms similar to alzheimer's. My sisters just used it as an excuse.

    February 23, 2011 at 17:42 | Report abuse | Reply
    • Lucy

      What was the medication?

      February 23, 2011 at 17:52 | Report abuse |
    • Kro

      "What was the medication?"
      Opiates such as morphine can and will do that. Pain management is rough business.

      February 23, 2011 at 18:23 | Report abuse |
    • Sarge

      Maybe you should have offered to help your sisters with the care of your loved one, if you're so sure they did the wrong thing.

      February 23, 2011 at 20:07 | Report abuse |
    • Summer Breeze

      Most people are not capable of taking care of someone with Alzheimer's symptoms, regardless of the cause.
      Why didn't you take your mom into your house and care for her yourself, if it bothered you to see her in a facility?

      February 24, 2011 at 05:53 | Report abuse |
  20. Miguel

    New research from the Mayo Clinic suggests that celiac disease should be considered when people start having trouble thinking, doing simple math or remembering things (Archives of Neurology, Oct. 2006). A review of patient records revealed several people who had been diagnosed with both celiac disease and dementia. In two cases, following a gluten-free diet reversed the cognitive decline. October 30, 2006 http://www.peoplespharmacy.com/2006/10/30/celiac-disease-1/
    That was my case.

    February 23, 2011 at 17:48 | Report abuse | Reply
  21. SB

    I just don't understand some of the comments I'm seeing here. Surely it's obvious that accurate diagnosis is required for the development and application of an effective treatment. How does that not make sense to anyone?

    February 23, 2011 at 17:50 | Report abuse | Reply
  22. evan

    my father also had to be laid to rest due to complications from dementia and parkinsons disease finally due to the fact that he could not swallow... However, I became frustrated nearly 2 years before this when his neurologist prescribed him an alzheimers drug "Aricept" simply because he had BARELY ANY slight memory problems that in my opinion half of them men his age had... I in no doubt believe 100% that this drug was forced upon my father, they even gave him free samples right away, etc... IS THIS ARTICLE implying that the alzheimers drugs are just perfectly fine no matter if the patient has alzheimers or dementia? what if the patient has neither? Does this drug advance dementia in a patient that , say, has no dementia or alzheimers to begin with? Why do I get the feeling this article goes out of its way to protect the makers of contreversial alzheimers drugs like the one that was given to my father years before he developed symptoms of true dementia (or lewy bodies, what it was finally diagnosed to be)?

    February 23, 2011 at 17:50 | Report abuse | Reply
  23. E. W. Parks

    Sadly, however, many patients diagnosed with Alzheimer's (mostly from memory loss, confusion, loss of motor function and coordination) may also have coexisting conditions such as vascular dementia and alcoholic dementia—Wernicke-Korsakoff syndrome—and possibly Lewy body dementia (i.e., possibly, LBD and Alzheimer's can coexist). None of these dementias is reversible or curable at present; the treatments are palliative, and, frankly, often provide false hope for the friends and families of the afflicted.

    February 23, 2011 at 18:02 | Report abuse | Reply
  24. spoo

    there is no effective treatment for AD, and won't be for long time. rulling out other possible causes of the dementia is the only benefit of the diagnosis.

    February 23, 2011 at 18:03 | Report abuse | Reply
  25. Jim, Louisville, KY

    "the Food and Drug Administration is currently weighing the approval of a brain scan that uses dye to highlight the plaques characteristic of Alzheimer's. The reliability of these methods needs to be confirmed, however."

    Let me guess – $10k/20k a pop with a very limited if any accuracy – no wonder health costs are going through the roof

    February 23, 2011 at 18:13 | Report abuse | Reply
  26. PS MD

    As a physician, I believe this is an academic point. I'm not clear the writer will have a better answer in 10 yrs, and we are even further away from specialized treatments for different types We still have the same treatments...mainly protecting the patient. We can stop a little of the early decline with medications, but safety and behavior is the mainstay. I think this article should not have even been printed on a site for the public.

    February 23, 2011 at 18:24 | Report abuse | Reply
    • Sarge

      Thank you for saying that, Doctor. A lot of comments here bear witness to what you say is true.

      February 23, 2011 at 20:11 | Report abuse |
    • NoNewInformation


      February 24, 2011 at 08:15 | Report abuse |
  27. Wendy

    Kinda funny to read this now. My grandfather passed away 9 months ago...and was diagnosed with Alzheimers after having a stroke. His wife did have it for sure, but I knew he didn't...yeah he would forget the day of the week, lose things. And he took the meds for it because the dr's said it would help. He knew what it was, and he knew he didn't have it either. I am not a dr, but I know he had vascular dementia...it would have been good for him though to NOT have had dr's telling him it was Alzheimers. After seeing what had happened to his wife over the course of her disease, he was so afraid those last 2.5 years of his life that it was going to happen to him. RIP my Papa! I told you!

    February 23, 2011 at 18:34 | Report abuse | Reply
  28. Matty-oo

    What if I told you our doctors and scientists already cured this disease and a boat load of cancers out there??! There is no money to be made if you cure people, no treatments, no medicines, no therapy..... So it makes no sense to "cure" anyone does it, they are all making way too much money and could care less who suffers in the process. We put a man on the moon in less then 9 years, come on, we can't tackle cancer!!?? It doesn't PAY to cure!

    February 23, 2011 at 18:51 | Report abuse | Reply
    • Jim, Louisville, KY

      Enjoy your fantasy. I agree that treatment pays better than prevention for Big Pharma but the human body is a LOT more complex than a rocket that simply has to overcome earth's gravity using an explosive propellant!

      February 23, 2011 at 19:01 | Report abuse |
    • Sarge

      You are a sad, disgusting little troll of a person.

      February 23, 2011 at 20:12 | Report abuse |
    • NoNewInformation

      Sorta makes one wonder, doesn't it Matty-oo. After all the disease has been studied at least since 1906.

      February 24, 2011 at 08:18 | Report abuse |
    • Cee

      As totally disgusting as some people want to think your post is, the truth is what you had to say carries much more truth than one can imagine. More importantly, those reading your post are missing the point. It is true that as much as we would like for the reverse to be true, the fact is that cures are not often sought for most body ailments. Between the pharmacological companies only drugs to treat symptoms are sought. There is far more money in treating symptoms than actually curing a patient. There was a study put out a few years back that had clear and compelling evidence that the THC in cannabis plant not only halted the plaque that is the disease of Alzheimer's Disease but it also prevented it. You can verify this by doing your own research. This information was kept from the general public because there is no money to be made from cannabis. Sad but true. The pharmacy companies control your health, you do not. Anyone who thinks differently is naive. Just visit this site for more information on this..http://www.cchr.org/videos/marketing-of-madness.html.

      The key is to be proactive in your health and the health of your loved ones. Doctors take millions of dollars from pharmaceutical companies, you can also research this as well, see if your doctor is receiving monies.

      Monitor your diet. With todays pre-made foods you truly have no way of knowing what chemicals are in the foods you eat.

      It seems to be to be dismissive of the truth because it makes you uncomfortable only narrows the mind. Do your research on your own not from word of mouth, or trusting 100% your physician. Find your own answers.

      February 27, 2011 at 13:46 | Report abuse |
  29. peggy

    My mother was diagnosed with Alzheimer's a year ago, when she actually had a staph infection which affected her mental capacities. Once the infection was cured, her mental faculties improved immensely. She has memory problems, but she is also 82 years old with advanced COPD. So, I don't believe she has Alzheimer's, but I am not a medical professional.

    February 23, 2011 at 19:07 | Report abuse | Reply
  30. MeTwo

    Crappola! I just can't remember which half were misdiagnosed. Who are you anyway? My son? No, that's not possible!

    February 23, 2011 at 19:33 | Report abuse | Reply
  31. mclj2011

    Alzheimer's is really sad to watch, when someone goes from being incredibly sharp with a great memory, to basically a complete mental invalid that can't even perform basic functions. I hope that medical science can find some better treatments soon, as the baby boomers age and many may start to lose their memories...

    February 23, 2011 at 19:50 | Report abuse | Reply
  32. markiejoe

    Many of the misdiagnosed cases of Alzheimers in the last decade come from the widespread long-term use of statin drugs, which have a debilitating effect on memory and, more particularly, language skills. So when many older folks who are on statins start forgetting common words in ordinary speech, as well as start forgetting other things, it's often diagnosed as early Alzheimers, when in fact if the person just gets off the statin drugs, the memory lapses and forgetting will disappear completely in three to six months.

    February 23, 2011 at 19:50 | Report abuse | Reply
    • Sarge

      Please cite some authoritative sources for your comments on statins.

      February 23, 2011 at 20:14 | Report abuse |
  33. jules43

    I'm so confused.

    February 23, 2011 at 20:32 | Report abuse | Reply
  34. zephyrous

    The major value of this article is to raise awareness that many cases clinically diagnosed as Alzheimer's Disease (AD) may, in fact, be another disease altogether. The research cited was completely unnecessary since those of us who examine such brains routinely have known this for decades. Lewy Body Disease is one potential alternative, along with some other less common diseases like frontotemporal dementia, multi-systems atrophy, Pick's disease, even some unusual forms of disases that usually have distinctive features like progressive supranuclear palsy. Basically, the clinical diagnosis is a "best guess" and the only way to truly be certain is to have an autopsy specifically performed for the purpose of determining the type of dementia. It is probably best for clinicians to stop using the diagnosis altogether given the high rate of misdiagnosis. some use the term "Alzheimer's-type dementia" which is still somewhat misleading but basically means a dementia that looks a lot like AD. Most standard autopsies, such as those that may be performed at community hospitals or medical examiner's offices, will not get the specialized staining required to differentiate these diseases. Even if AD is identified, in many cases there is a coexistent second disease that will only be identified when the brain is studied by a neuropathologist using very special staining techniques. In my experience, about 20% of AD patients also have Lewy Body or some other form of dementing illness that is typically missed on routine exams. That is in addition to the 20-30% who actually do not have AD but have another disease altogether

    The utility of knowing this information is twofold (although again, this study was a waste of time since neuropathologists all know this already and have for a long time – I hope this study wasn't funded by my tax dollars). First, any research done on AD based only on clinical diagnoses is worthless. It is therefore imperative when evaluating outcomes research or pharmocologic research to be careful to only accept studies where diagnoses were confirmed neuropathologically. Second, although most AD is not hereditary some of the other mimics may be. Family members vary widely on whether they do or don't want to know that they may be at risk. Many prefer not to know, as they find it too depressing to consider that they may be headed down the same path as the loved one that they just saw deteriorate so dramatically and painfully before their eyes. Others really do want to know, in order to plan for the potential outcomes or for other reasons. Certainly, anyone considering undergoing any type of genetic testing should be counseled regarding what the reasons are for such testing and whether they truly do wish to know or not.

    For the average individual, this article is irrelevant. Dealing with a loved one's dementia is a terrible hardship and knowing after the fact what the precise etiology is does no good. For those who wish to know their own risks, however, an autopsy is invaluable. And certainly for the sake of any scientific studies done on dementias, autopsy confirmation is mandatory.

    February 23, 2011 at 20:55 | Report abuse | Reply
    • NoNewInformation

      Vote for most informative post!

      February 24, 2011 at 08:30 | Report abuse |
  35. NeuroSPECTofFlorida

    Maybe the author should do some research on diagnosing the disease...

    February 23, 2011 at 22:11 | Report abuse | Reply
    • zephyrous

      The article you linked is junk, until those patients' brains are examined by a neuropathologist. Many of the included patients do not have AD. I understand your excitement as a radiologist about the possibilities, but this still does not help differentiate clinically those cases that truly have AD versus those with other forms of dementia. A comparison between "presumed AD" patients and normal controls does nothing to help determine which patients actually have Lewy Body disease, frontotemporal dementia, or the myriad other diseases that clinically may mimic AD. The article you linked should never have been published as is. It should have been rejected until there was enough follow-up with neuropathologic confirmation of the actual disease to be meaningful. The DSM-IV criteria, "experienced psychiatrists", etc are wrong A LOT. I see their misdiagnoses regularly, even at a very highly respected academic medical center.

      February 24, 2011 at 21:03 | Report abuse |
  36. Robert B.

    My Dad was getting demensia and he was diagnosed with Alzheimers. Then we got a second opinion and it turned out to be hydrocephalus. He had surgery and now is OK. Everyone who gets a diagnosis of ALZ should get at least one or two more opinions.

    February 23, 2011 at 22:34 | Report abuse | Reply
    • Nurse Connie

      How true. Never just accept a diagnosis of ALZ. A person can live well with hydrocephalus - "water on the brain" - but only if caught in time. A lot of doctors don't even think to consider it or they don't know enough about it and it can mimic some symptoms of Alzheimers.

      February 23, 2011 at 22:39 | Report abuse |
    • NoNewInformation

      Agree with Robert and Connie. The dang disease cannot even be diagnosed 100% without a brain autopsy!

      February 24, 2011 at 06:49 | Report abuse |
  37. cinna

    Ok ppl, some are confused here. AD is a TYPE or FORM of dementia, such as parkinsons & pic's are TYPES or FORMS of dementia. Those saying/thinking that some of these FORMS of dementia are linked to AD, research dementia, plz! There are various types of dementia, NOT just AD. Also, to the person that said AD has tremors (shakes), WRONG! Tremors, usu, not always, are linked to parkinsons not AD. I have worked w/ dementia for almost 12yrs now & have taken many classes etc on the subject of AD & related dementia. Yes, there are many similarities between several forms of dementia, which can complicate the proper diagnosis. Plz, do your research b4 making sure fire comments on whats what. Im not trying 2 undermine anyone, or stir up ill feelings, but to those suffering w/ a form of dementia, their families or work w/ thoseaffected by it, it is almost insulting & shows lack of knowledge.

    February 24, 2011 at 07:00 | Report abuse | Reply
  38. Bob DeMarco

    The majority of Alzheimer's caregivers will find this article disappointing. At first blush, the headline would imply hope. If 50 of Alzheimer's patients percent are misdiagnosed, one would come to this article hoping to learn that in the case of those that are misdiagnosed there is a "treatable" alternative. Sadly, this was not the case.

    Nevertheless, this science does add to the overall goal of identifying a successful treatment and cure. The deeper scientists dig, and the better they understand the causes of dementia, the greater the possibility that a path to a cure will be identified for some or most.

    We can only hope and pray.

    Bob DeMarco
    Alzheimer's Reading Room


    February 24, 2011 at 07:48 | Report abuse | Reply
    • NoNewInformation

      Thank you, Bob, and Amen. I pray every day.

      February 24, 2011 at 08:29 | Report abuse |
  39. kim

    hi, my mum is in the final stage of dementia,shes bedridden totaly hasnt eaten for 3 months living only on fluids and now at the stage of not being able to swallow at all just about for fluids.someone mentioned about the only way to know for certain what exact ly the disease was is after death in autopsy, how do i go about having this arranged for when she does finaly pass away as i tink its vital for me and my siblings to know for certain for our futures as well but the thought of arranging this now is heartbreaking.

    February 24, 2011 at 08:23 | Report abuse | Reply
    • Mike

      Talk to her doctor about an autopsy, as to your concern, early onset AD is hereditary.

      February 24, 2011 at 14:42 | Report abuse |
    • zephyrous

      An autopsy, performed by a neuropathologist, is the only way to determine what disease, or diseases, she has. Most community pathologists do not have the knowledge or the availability of specialized staining techniques to diagnose many of the alternative diagnoses, or to accurately determine if another disease may be co-existant. If you only have a community hospital available, the brain may be fixed in formalin and sent to an academic center for a neuropathologist to perform the examination.

      February 24, 2011 at 21:08 | Report abuse |
    • zephyrous

      Sorry, I forgot to tell you "how" to go about getting this done. Unfortunately, the easy of getting a quality varies widely depending on where you live. If you live in an area that has a teaching hospital or medical school, try calling the neuropathology department. If you only have smaller hospitals available, try calling the pathology department and ask specifically what can be done to ensure an accurate diagnosis of dementias, for example do they have the ability to only remove the brain and send it to an academic center. In the USA, the College of American Pathologists maintains a list of pathologists willing to perform private autopsies, and many will be willing to perform a brain only autopsy and can often help facilitate the transfer of the brain to a neuropathologist. It may also be worth talking to her neurologist to help facilitate the autopsy. Please be aware that there will likely be a significant cost unless she can be enrolled in an academic study or is a patient at an academic hospital. Charges for a "private" or "outside consult" brain only autopsy for dementia work-up, because of the specialized staining techniques and large number of sections that need to be studied generally start around $1000 and go up from there.

      February 24, 2011 at 21:18 | Report abuse |
  40. nurse nancy

    I worked as a nurse (LPN) in an assisted living/memory care facility for more than 5 years in NC. Assisted living facilities should NOT offer memory/Alzheimer's care simply because they are not trained or qualified to deal with the special needs of this population. This is a huge money maker for assisted living companies and they milk it for all it's worth. This population, at best, should be under skilled nursing care. The state also doesn't oversee these facilities properly – they could care less about patient care. You would not believe the issues that are swept under the rug – believe the horror stories for most are true. For those who have a loved one with Alzheimer's or other memory issues, get care at home if possible. If not, try to find a skilled nusing facility that has a memory care unit. I finally went back to work at the hospital where I wasn't forced to compromise my professional values for the sake of maintaining an assisted living census.

    February 24, 2011 at 09:59 | Report abuse | Reply
    • Lucy

      Instead of just keeping quiet and saying we wouldn't believe what goes on, how about writing a book about your experiences? Perhaps it would help family members know what to look for, and shining a light on the problem might bring about reform in the way care is handled.

      February 24, 2011 at 11:26 | Report abuse |
    • NoNewInformation

      Good post, even though it's not the message I want to hear. Still, I'm afraid it DOES come from experience and reflect the truth. My Mom is in Assisted Living; I certainly do think they milk it for what it's worth and they don't really do half what they put on their patient care plans. They vary significantly in the services they offer (meaning some are better equipped to deal with dementia patients than others. Some don't accept dementia patents at all.), and they tend to be severely understaffed and have a very high rate of employee turnover (not much consistency of caregiver(s) for the residents) despite skyrocketing costs; I've seen patients urinate in the hallway, walk down the hallway naked from the waist down, and women about to fight in the common areas. Fortunately, Mom hasn't seen any of this yet! So, yes, it is bad. Unfortunately, I guess that's the nature of dementia, and the only news is it'll only get worse. (I'ts also the bottom line of the pain and frustration being expressed in a lot of these posts - espcially mine and, I suspect, Sarge's. Correct me if I'm wrong, Sarge. There simply is No New Information, and patients and their families are suffering tremendously from this horrific disease. It helps, though not much, to be able to vent this frustration.) I totally agree with you, Nancy - home care is by far most desirable solution. The patient actually receives one-on-one care in their familiar surroundings, more consistency of caregiver(s), more activity, and more personal stimulation. Adult Day Care can provide welcome relief for caregivers, too, and be a terrific option for fun activities and socialization for participants. Problem with that in Mom's situation, however, is: Mom was doing well with in-home care - until an IED constructed by my brother was discovered in the garage under her bedroom and detonated by the bomb squad. The folks from in-home care quit (though I'll never understand why!!! They really loved my Mom!), and I couldn't even enroll Mom in an excellent Day Care Program within walking distance from where I work as a result of concerns over the brother. That's because this Day Care Center is at a church, and they have a Childrens' Day Care program there as well. I had no choice but to get my Mom to safely somewhere. I desparately wish for more personal care for Mom. Mom liked the idea of Adult Day Care that never materialized - I did, too! I like the idea of independent community living. But, I also have to definitely agree with you that for the most part Assisted Living appears to be inadequately prepared and trained at this point to deal with dementia, or at least some of the stages ot it. As Sarge said, it's probably going to become necessary to place her in a nursing home at some point anyway, and there does usually come a time when dementia just can no longer be handled by in-home care. I don't want to hear this either, but I have to. Mom's been in several nursing home/rehab centers for short periods of time for very excellent cardiac and physical therapy. I'm just so torn! Frankly, I don't think Mom was really any any better off in a nursing home as far as personal attention goes, and will most likely worsen if she carries out her threat to give up and die if placed in a nursing home. The food is just as bad or worse. Transportation to and from doctor appointments is a huge issue for people like Mom who don't necessarily want to see any more doctors and who also have mobilitiy issues. It's amazing how much is still left to the familiy when a loved one goes into either assisted living or a nursing home. So, where do I stand? Again, I know of no truly effective treatments for dementia, I'm unable to find the perfect solutions to these and other issues patients and families deal with, and we're just plain frustrated!

      February 24, 2011 at 11:30 | Report abuse |
  41. Mike

    A Bible verse says "Once a man, twice a child" and that means that only a healthy adult can be left alone to take care of him/herself, while children and the elderly need assistance, that has been so for so long, it is nothing new.

    February 24, 2011 at 11:01 | Report abuse | Reply
  42. Scott

    I have seen several studies that show some Alzheimer's medications are no better than placebo. I wonder if those results are valid since we can presume half the cases admitted to the trials. were misdiagnosed. The old saying "The diagnosis is half the cure" seems to emerge here.

    February 24, 2011 at 12:13 | Report abuse | Reply
  43. nurse nancy

    I agree Scott. I really wonder about the efficacy of these drugs which are very expensive. Some families barely have money to pay for residential care much less these drugs which don't always work. In my opinion, by the time a person needs residential care, these drugs don't make a difference yet families are afraid to discontinue them and doctor's don't seem educated enough about Alzheimer's to provide any support or direction. The pharmaceutical companies however have done a super marketing job and are making astronical amounts of money from families who will grasp at anything. Between the assisted living facilities delivering sub-standard care for a huge price and the drug companies, it's a no-win for the patient or family. This is incredibly sad.

    February 24, 2011 at 15:12 | Report abuse | Reply
  44. Rich Valpey

    The same doctor who diagnosed my dad with Parkinson's entered Alzheimer's as the cause of death on his death certificate

    February 24, 2011 at 16:19 | Report abuse | Reply
  45. Tard

    What are you people doing in my living room?!

    February 24, 2011 at 18:31 | Report abuse | Reply
  46. Kay

    My husband was misdiagnosed with Alzheimer's until the last year of his life when a new Dr. said he had Lewy Body Dementia. The problem with this is that he had been given several meds which I found out later were contra-indicated for Lewy patients and could make them worse or even kill them. After being given two of these drugs he took a major downward turn from which he never recovered. He stopped talking, he suddenly began to crawl on the floor and curl up, began sweating profusely and no longer knew how to feed himself. I knew something was very wrong and begged them to stop this med immediately but it took almost a week. He never regained his ability to talk, he still occasionally crawled on the floor and was generally worse in every way. He had also been taking Excelon which did seem to help but how do you know for sure? Prior to his death from respiratory failure he started to get stiff joints and muscles (neck, back, knees, shoulders, legs etc.) Eventually was confined to bed and he didn't have enough muscle strength and was virtually a prisoner in his own body, He wanted to talk and we are sure he could hear me talking to him as sometimes tears would forn and run down his cheeks. It's an awful way to go and it's also very hard on the loved ones. As for the cost, the assisted living dementia facility started out at $4K, within a few months raised it to $5K, then to $6K, then threated to raise it to $7K, mostly because they couldn't figure out what to do with him and why he was acting differently than the other patients with AD. I then found a lovely board and care that offered much closer caretaking and supervision at 1/3 or the price. There are some very good board and care facilities out there but you have to look. I cared for hin at home for seven years befoe he began to "wander" and try to escape. He jumped our six foot fence regularly and rab off down the street. I had retired early to care for him but I couldn't keep up with him at this point.. He was only 58 when diagnosed and 68 when he passed away. I intended to care for him at home until the end but the rates for geko for hourly caretakers in our home were not affordable for most of us middle income folks. It most of our savings to care for him. I had less than ten years to plan for his care instead of the retirement we had hoped for. Lewy is very similar to Alzheimer's, very similar.

    February 24, 2011 at 20:52 | Report abuse | Reply
    • NoNewInformation

      Kay, this is truly sad, and I'm praying for you. The assisted living facility my Mom is in has increased her rate over $500 a month in less than 2 years. They insert some new fee with every bill, and they are about to price themselves off our market. Mom has VA Aid and Attendance from my Dad's military service, but even that doesn't make ends meet. Brookdale Senior Living upper management is truly not in business to help folks in need. The only thing they're interested in is their profit, and they will take advantage of the most needy for it, too. They have absolutely no compassion for their residents or their families or the suffering they are experiencing. I'm already considering what is going to happen to my Mom when the funds are spent. I'm just hoping and prayi

      February 24, 2011 at 22:12 | Report abuse |
  47. Wonder

    A long time ago (1994) I was speaking with a Fransiscan monk in Honduras and he said (about as somberly as anything anyone has ever said to me) "Mental illness is becoming an epidemic." Since then, I've been watching what has been happening. I believe something is going on with our nervous system, like an attack or something. When looking at AD, generic mental illnesses, parkinsons, autism (although not thought of as degenerative, when a child can speak and then looses speach, thats degenerative). I can only come to the conclusion that there is a widespread assault on our nervous systems (not in a conspiracy way), I've considered the differences in diagnosis raising rates of disease, but it doesn't cover everything.

    I would hope that someone is looking at the situation in its entirety.
    Perhaps there is something in common that could lead to a cure, or if not a cure, a better understanding of the situation.

    February 24, 2011 at 21:48 | Report abuse | Reply
  48. nurse nancy

    I keep hoping through blogs like this that someone in the media will take a very close look at Assisted Living facilities that offer Alzheimer's Care. The public needs to understand that these facilities are not equipped to handle this population. When I was a nurse in this field, staff frequently requested training which was denied due to the expense. They were making $2 million a year profit and there was no money? These places need to be exposed. What is budgeted for food is a horror not to mention the lack of quality care. If you have a loved one in a facility like this and there are problems, don't bother working with the director/administrator most of whom are cover up masters. Contact corporate officials -many don't have a clue as to what is actually going on in their facilities – it's your right and that of your loved one. I have seen some positive results once "corporate" folks were involved.

    February 25, 2011 at 10:08 | Report abuse | Reply
  49. Jean

    I am very interested in creating awareness for families who have loved ones in an Assisted Living facility. We had nightmare after nightmare. Medication errors, a prescription started without a doctor's order, poor food, not following the care plan, saying my mom doesn't remember things. With outside help, detailed notes, and somebody who listened on their executive team, we have begun to see positive changes in staffing, nursing and food. But, there is so much to be done and it needs to be easier. We're all going through such tough learning curves and there are not easy ways for us to learn from each other.

    February 25, 2011 at 13:22 | Report abuse | Reply
  50. Susan

    After reading some of the comments, I am relieved to see that I am not the only relative of an elderly person who is disputing a specific diagnosis, and in my case, RX of "Excelon patch", which only made my mother's confusion worse. The smart neurologist in Richmond, Va whom I so offended by writing him of my doubt of his diagnosis, that the Excelon patch exacerbated her bladder infections (he needed to read the package insert), and made her confusion worse, not better, was very insulted that I would challenge his opinion.

    I called his attention to Mother's Iatragenic poisoning by lithium which had been discussed in the initial visit, and he has not bothered to respond to me, Of course the lithium disaster was a medical error, because it was not monitored, and was given with the diruretic HZT. She had also been prescribed a few of the anti-spychotics several years ago, Seroquel, and Risperdal,. which today have warnings regarding dispensation to the elderly.

    Clearly seeing two separate medical situations which could have caused her condition today, I am beginning to wonder if some of these AD diagnoses are simply medical cover-ups of previous doctor or drug company misjudgements.I also wonder if he is covering for a fellow doctor, in the same medical community by overlooking the serious lithium poisoniong and the inability of her previous PC to take charge of the toxic lithium state which went on for several months,.

    Reading once again that the different forms of dementia cannot be diagnosed with accuracy until autopsy, and already being aware that vascular dementia does not respond to Alzhimers meds, makes me question his certainty of treatment even more.

    I think we need a better neurologist, in my mother;s case, one who actually listens, and one who can be honest about her total medical condition, including past medical mistakes, instead of prescribing an Excelon patch and overlooking the rest.

    February 26, 2011 at 13:03 | Report abuse | Reply
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