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Wednesday, August 14, 2013

When It’s Not Alzheimer's: Little-Known Illness Mimics Dementia

Jim Lampert, right, was diagnosed with Alzheimer's disease, but his wife Terrie, left, found a specialist who diagnosed him with normal pressure hydrocephalus. (Screenshot from Boston Globe video)

Jim Lampert, right, was diagnosed with Alzheimer’s disease, but his wife Terrie, left, found a specialist who diagnosed him with normal pressure hydrocephalus. (Screenshot from Boston Globe video)

The last thing most patients do when they receive an Alzheimer’s diagnosis is seek another diagnosis.

But research shows that up to 5 percent of dementia cases are misdiagnosed cases of a treatable but largely unknown condition called “normal pressure hydrocephalus.”

It is theorized that NPH arises from excess fluid building up in the brain. The cure is to drain the fluid with shunts.

In one case described in The Boston Globe, a Massachusetts man named Jim Lampert was confined to a nursing home, unable to control his bladder or bowels, read or even carry on a conversation.

Though diagnosed with Alzheimer’s, his wife was skeptical, and finally had her husband re-diagnosed and treated.

Dr. Mark Johnson runs the Adult Hydrocephalus Program at Brigham and Women’s Hospital in Boston and cared for Lampert.

After Johnson surgically inserted a shunt system into his brain to drain the excess fluid, Lampert got his mobility and his life back.

Johnson has treated a number of patients for NPH, but he is still awed by the outcome of the treatment.

“I still feel that way whenever I see this transformation in patients, after the shunt has been placed,” Johnson said. “And it’s a godsend for the patients and for their caregivers.”


  • Dr. Mark Johnson, brain surgeon and head of the Adult Hydrocephalus Program at Brigham and Women’s Hospital.



If you have a loved one diagnosed with Alzheimer's, have you sought out a second opinion? Maybe not. The symptoms are so compelling - loss of memory, inability to speak or read, walking funny. But wait. Those are also some of the symptoms of a treatable, even curable illness called normal pressure hydrocephalus.

The Boston Globe recently profiled 72-year-old Jim Lambert, whose health severely declined over two years until he was eventually put in a nursing home or, as he says now, "they put me in a cupboard and forgot about me" - except for his wife, who never believed Jim had Alzheimer's.

And she finally found our next guest, who proved her right. Brain surgeon Mark Johnson heads the Adult Hydrocephalus Program at Brigham and Women's Hospital here in Boston. Doctor, welcome.

DR. MARK JOHNSON: Thank you. Thank you for having me.

YOUNG: So a misdiagnosis. How often does this happen that someone is diagnosed with Alzheimer's and they actually have this treatable illness?

JOHNSON: Well, current estimates are that 5 to 10 percent of patients with dementia actually have NPH; and most of those patients who have dementia are diagnosed with Alzheimer's or Parkinson's disease, or they have no diagnosis at all.

YOUNG: But they have this - as you say - NPH, normal pressure hydrocephalus. What is it?

JOHNSON: So it's thought to be caused by an excess of fluid in the brain, although there's some debate about whether that's really the problem. It's certainly the case that if you look at a CT scan of the brain or an MRI of the brain, these patients often have more fluid than normal. And if you drain that fluid, they get better.

YOUNG: Well, then that is the treatment. You put a shunt in and you literally drain it. And what happens? What do you see happen?

JOHNSON: So often these patients will come in with many months or even many years of walking problems. They often have incontinence. They may wet themselves, wet the bed at night. And often they have dementia, usually short-term memory problems. And after draining the fluid, the walking will improve. I've had many patients who've come in a wheelchair, unable to walk, and then after placement of the shunt, they're able to walk without assistance. The incontinence will often go away completely, and their memory will improve.

YOUNG: Well, one person who came to you was Florida philanthropist Susan Sontag, not to be confused with the author. She'd fought brain cancer, started a foundation, was having new health problems when she was coincidentally sitting next to you at a dinner, and you determined what?

JOHNSON: Right. Well, I have known the Sontags for quite some time. When I first established a brain tumor research laboratory at the Brigham and Women's Hospital, they supported my research. So I have known them, and have attended their scientific foundation meetings annually, for about 10 years. And over that time, I had observed her walking ability decline, and had also spoken with her and her husband about some memory issues that she was having.

And recently, the penny dropped in my own mind and I thought, you know, she looks like a person with normal pressure hydrocephalus. And I suggested that she be evaluated. Until that point, everyone had thought that this was simply the side-effects of her brain tumor treatment.

YOUNG: And that would be a reasonable conclusion because she did successfully fight brain cancer - but one would think, well, maybe this is an after-effect of that. And in the case of Jim Lambert - we mentioned him, the 72-year-old who was profiled by The Globe - it was discovered he had normal pressure hydrocephalus after he was so declined that he was in a nursing home, slumped in a wheelchair. What happened to both him and Susan Sontag when they had the shunts put in, to drain the fluid from their brains?

JOHNSON: That's right. So when I met Mr. Lambert, he was in a wheelchair. He could not stand on his own, required two people to assist him; and had been told that he had Alzheimer's disease. But in his case and in Susan Sontag's case, we placed a shunt, and their walking improved tremendously. Ms. Sontag was able to walk, but she was very unstable and required assistance, especially on uneven ground. And she, after the shunt was placed, was able to walk briskly down the hallway without any assistance.

YOUNG: It would seem miraculous to the family members, I would guess.

JOHNSON: You know, we all felt that way, too, and I still feel that way whenever I see this transformation in patients after the shunt has been placed. And it's a godsend for the patients and for their caregivers. It really makes a big difference.

YOUNG: Well, Jim Lambert is now back at home. His wife can care for him. He's moving around except for, you know, on occasion, he might need a cane. I mean, just quite something, home from the nursing home. We don't want to get people's hopes up, Dr. Johnson, but would you recommend that people who have received the diagnosis of Alzheimer's, that their family members check out normal pressure hydrocephalus?

JOHNSON: I think patients who have been diagnosed with Alzheimer's or Parkinson's disease, or any patients who have one or more of these symptoms that develop as they get older, should be evaluated. So the symptoms are problems walking.

YOUNG: Actually, that jumped out at us because it's problems walking, but also a pretty specific - like, a wide stance, shuffling gait.

JOHNSON: Yeah. They have something we sometimes call the magnetic gait. It's as if their feet are stuck to the floor. So they usually shuffle along. But I have seen some patients who just complain of being off-balance. So that's a major symptom of normal pressure hydrocephalus. Incontinence is another one and, as I mentioned, some memory difficulties. And some patients have one or two of these symptoms. You don't have to have all three. But if you find that you're developing these symptoms as you get older, I do think it's worth being screened to see whether it's NPH because that can be treated.

YOUNG: Quite something. Dr. Mark Johnson, who heads the hydrocephalus center at Brigham and Women's Hospital here in Boston. Dr. Johnson, are doctors aware of this across the country? It sounds like they will be more aware now. This is getting some publicity but I'm wondering, will doctors be aware?

JOHNSON: So there was a recent study - in 2008, which showed that somewhere between 10 and 30 percent of doctors have never actually heard of normal pressure hydrocephalus. So I do think it's important for doctors to learn more about this disorder, and for patients to raise these questions with their doctors.

YOUNG: Dr. Johnson, thanks so much.

JOHNSON: Thank you so much.

YOUNG: So is this raising alarms? Or maybe you've had this experience, Alzheimer's that was really this normal pressure hydrocephalus. Share that experience, or find more information on NPH at hereandnow.org. Other ways to reach us, by the way: facebook.com/hereandnowradio, on Twitter @hereandnow, @hereandnowrobin, @jeremyhobson. Transcript provided by NPR, Copyright NPR.

Please follow our community rules when engaging in comment discussion on this site.
  • Corinne Price

    Are Alzheimer’s symptoms such as personality changes (cursing and accusations) and sundowner agitation (hitting and kicking) ever found with normal pressure hydrocephalus? If someone has those symptoms as well as the walking, incontinence, and memory problems Dr. Johnson described as common to both disorders, is it still worthwhile to have tests to rule out normal pressure hydrocephalus? Or do those symptoms rule it out in themselves?

    • kbmm

      My understanding is that people who have the symptoms of NPH — particularly the walking issues — should be evaluated. Personality changes can (but are not necessarily) a symptom of NPH. It might be worth contacting a Hydrocephalus Center, such as the one at Brigham and Women’s.
      Karyn (Here and Now producer)

    • Barbara Ferreira

      After reading the AARP on Your Heath, I too, am wondering on my husbands
      all of the sudden he will have a sudden attack of cursing and hitting accustions and all the above. He is taking many medications, and I am worried that ity isn not Dementia, he seems to black out and not remember anything that had happened. I asked the doctor if it is neccesary to take Lipitor at 85 or gabapentin or meclizine. He has COP and is taking the meds. for that and also has diabetas 2, he is taking metformin. Since I have stopped the meclizine and the lipitor, and is watching his reactions, and I do not think he have Dementia. He has been quiet and nice. Please help me.
      should I ask the doctor for some kink of test for Hydrocephalus.?

  • Ken Morris

    My Father had the classic symptoms of NPH and it was missed for two years, everything from medication to dementia was blamed. He finally was diagnosed and had the fluid drained via a spinal tap, this was done as a precursor to shunt surgery in an effort to see if draining the fluid would improve his condition, unfortunately my Father also had suffered a number of mini-strokes which exacerbated his issues; he was dubbed ineligible for surgery. When I describe my Father condition, I always say it’s like Alzheimer’s, but it’s not…

    • J Geiger

      My mother lived a remarkably similar story to some of what’s recounted in this story, and in your father’s. She suffered eleven long years of failed diagnoses all over the country. Some of the difficulty for doctors was that even the ones who considered NPH felt that its symptoms were so similar to a host of other possible illnesses. Only a spinal tap would give a clear sign, and, absent anyone’s memory of a blunt head trauma in my mom’s history, it was dismissed.
      Her decline began with loss of balance while walking and progressed to memory loss, incontinence, and inability to even sit up or eventually to speak. Finally, a spinal tap did just what was hoped in your father’s case: it presented promise enough that doctors would try a shunt.
      Just hours after her shunt was placed, my mother opened her eyes and said, “Oh it’s good to see you.” It was her first full sentence in perhaps a year.
      From there, cognitive improvements were fast (and very traumatic for her, as she came to terms with lots of lost time and the realization that her husband had died recently) – physical improvements were much tougher, and demanded lots of PT and OT.
      The wisdom and devotion of her medical practitioners was only matched by the cruelty and dysfunctional bureaucracy of our nation’s current health insurance system. This is in fact relevant to the story, as doctors’ second-guessing their liabilities and our coverage figured into their reluctance to try the treatment that ultimately suited her so magically.
      It’s a great service that you’ve done in telling this story. Hopefully, this will contribute to both our awareness of such illnesses but also the pricelessness of treating illness without the usual litigious and costly hindrances that increasingly attend health care.

  • Evelyn Donaldson

    I was so pleased to hear this discussion concerning Normal Pressure Hydrocephalus today. Two years ago, I became concerned with short-term memory/word-search issues, incontinence, and balance. After falling several times I contacted my primary care physician. I was aware of hydrocephalus, having seen its effects on 2 people in a nursing home. My doctor ordered an MRI at our local hospital. It showed an increased amount of fluid. Based on a series of MRI’s and testing of spinal fluid, I went to a neurosurgeon. He was ready to operate when I decided to go to another neurologist. She questioned the results of the MRI’s, stating that that particular method of diagnosis overwhelming resulted in false positives. I decided not to go ahead with shunt placement, and instead went to physical therapy for my balance issues, and a counselor for stress issues which helped with my short-term memory issues. I mention my experience because it is so very important not to have shunt placement without thorough testing at a reputable neurological institute. Testing for NPH is very important, especially with the tendency for general practitioners to diagnose Alzheimer’s after a 30 question test and a persons age. I only urge thorough testing before undertaking surgery which can carry with it its own hazards.

  • therightway40

    Is it Alzheimer’s are not is a very important question, everyone should protect themselves from this illness http://malalzheimer.blogspot.com/2013/03/how-to-reverse-alzheimers-disease-what.html

  • Dr.Outstanding

    Wet, wobbly and wacky, thats how the medical students remember it.

  • Maureen Hawley

    I recently became guardian to a 72 year old. He was dx with NPH and had the shunt placed. He is now able to walk and will soon be able to come back to the community (from a nursing home). He had mobility issues for 5+ years as well as inc and mentation issues. He is now functioning significantly better in all areas. It truly is amazing and so happy for him that he was diagnosed and treated.

  • Diana Felber

    My Sickstory
    I can’t even remember when they began – the sickening frustrating signs – the symptoms –that led me to finally say that something was terribly wrong with me.
    Was it when I fell down on a simple walk around Benedict Pond, simply toppling over and getting a bruise I still wear on my shin? Did I no longer have any balance?
    Or was it when I fell off my bike – -2 times – on easy rides, a couple of years ago or when I sought help for increasing loss of bladder control? Was I really incontinent already? And why?
    Why could I no longer keep up on hikes, or even walk with my usual strong stride? I was actually shuffling down the street. What the hell was wrong with me?
    Not to mention my verbal abilities, my memory, or my paintings. Words failed me, just wouldn’t come. I couldn’t even think of what I couldn’t say.
    My paintings got depressed – losing color, vibrancy, delicacy and inspiration.
    Was I getting old fast or was it early signs of Parkinson’s Disease, or worse, Alzheimer’s?
    And then there’s dancing – one of the biggest joys in my life. I had always sworn that I wouldn’t end up on my deathbed saying that I hadn’t danced enough. Yet here I was, sitting outside at dance events, trying not to look too pathetic, watching my sweetie cutting up those rugs something fierce, getting wilder and wilder. And envying any woman he danced with – I had been the one who’d gotten him to dance better and now look at me! I was pathetic, furious and helpless!!
    And then Sam, my savior, my old friend, who had shared all my major life events, flew in on his little plane, my very own deus ex machina, and said: “ Diana, you have to see a neurologist – and fast!”
    I remember the day when the MRI found the problem. I was overjoyed: “Hooray! I have a brain tumor!” So that’s what was causing all my problems – and we can remedy it.
    Now here I am, 9 months after brain surgery and I have my life back. I am walking, talking, biking, thinking, painting up a storm and even dancing.

  • Diana Felber

    The story below is how I experienced NPH, and the joy of recovery. I feel such gratitude for modern neurosurgery.

  • Tina Rael O’Meara

    This sounds like what my 88 year old mother is experiencing. She seems to be on the fast track to dementia. Now one in the medical profession will listen when I tell them something is wrong. Within the past month she has lost the ability to do math in her head something she took pride in. She just can’t seem to concentration long enough. She now asks me when sitting in her recliner chair what button she should press to put her feet. Something is wrong. What can I do to get the medical profession to do something before it gets worst?

  • mimsy

    There is a book on normal pressure hydrocephalus by Adam Mednick M.D. that is very informative and accessible to the lay reader. Explains the symptoms and difference between Parkinson’s, Alzheimers and NPH. The only book out there on the subject I believe.

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Robin Young and Jeremy Hobson host Here & Now, a live two-hour production of NPR and WBUR Boston.

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