Hi! First post here--so here's the background: My mom has had COPD (lung disease) and been on oxygen 24/7 for 3+ yrs. Last year she went to the hospital with a breathing spell and while there was also diagnosed with AD and put on Aricept. She seemed to respond pretty well to that and has been ok living at home, with dad as her caregiver. However, in the fall '07, Dad was diagnosed with NPH after his internist referred him to a neurosurgeon because of some test he had done. He did have a poor gait, incontinence issues, and his memory issues just seemed to be starting to get a little worse. After a lumbar puncture his gait improved greatly, as did the headaches, so the NS recommended the shunt surgery to drain the fluid for the NPH. Before this could be scheduled, Dad hit his head quite hard and developed a subdural hematoma. They had to do surgery in Nov. to remove/drain this. So, after that surgery Dad wanted nothing to do w/any cutting on his head!! He seemed to recover pretty well from that and 'coasted' for a couple of months. Mom & Dad were getting along on their own in their home, driving, paying bills, etc. In March, however, Dad's symptoms seemed to be worsening by the day. The NS had not wanted to do shunt surgery too close after the previous surgery for fear of another hematoma, and perhaps not even at all if not warranted. After reviewing the rapid worsening of Dad's memory, day-to-day functioning ability, reasoning skills, etc--the NS recommended the shunt surgery. On Apr.8th Dad had surgery. From the hospital he went to a rehab facility for a few weeks. His gait had improved considerably, no more headaches, still some incontinence and memory issues tho. During that time he visited a new Neurologist, who diagnosed Dad with Alzheimers in addition to the NPH. This was the first time we had ever heard the word AD with Dad and I was surprised. I thought everything had been due to the NPH. He was placed on Aricept at that time. While Dad was in rehab, Mom had 24/7 care--either family or hired caregiver as she can't stay on her own. During this time, she had a breathing 'exasperation' and was in the hospital for a week on steroids to clear her up. She'd been home a few days when Dad was released from rehab as well. We siblings had decided and talked w/Mom & Dad that they really couldn't live on their own and we couldn't keep up the pace we were on w/the in-home caregiving for them (personally or financially). Dad had visited an AL facility and signed a 90-day trial lease and Mom & Dad seemed excited, tho apprehensive about their new 'home'. They were only home together for a week before we moved them to AL. That week it was hard for them to get used to one another again. Dad was showing some paranoia signs and some memory probs. and we knew moving them might escalate both of their dementia issues, temporarily. Well, the point of this rather long post is that since May 30th, move date, life has been hell. Dad seems to have hugely escalated in his AD since the move and is very angry and wants to move home. He can't believe we're treating him this way, etc, etc, etc. I feel he's gone from a stage 4 to stage 6 within 2 weeks. He's very paranoid, angry outbursts, mood swings, bowel incontinence, etc, etc. I know it's because he feels he's lost control and he hates what is happening to him physically. It's very hard to deal with as 'daddy's little girl' in the family. Anyway...my question...did Dad ever have NPH to begin with or was that surgery all totally unnecessary and perhaps escallated his AD?!?! I am mad now that we did not get a 2nd opinion on the NPH/shunt surgery...but as I said, at that time, AD had not even been mentioned. Dad had been relatively healthy up until 6 months prior...NPH seemed logical and hopefully fixeable (tho we knew it wasn't a guarantee). I can't wait to hear any input about this. Meanwhile it's sleepless nights for me as Dad is not adjusting to this move and his outbursts are killing my mother's breathing issues/mental issues as well (sometimes she understands it's his illness, sometimes not...sometimes she's afraid of him). I don't know the answer but I'm becoming afraid to answer my phone when I see it's him on the caller ID and of course there's guilt for that. I'm at their AL place almost every day and I need to regain some of my life as I have 4 kids, ages 5-16 (& a fab. hubbie) who've been greatly affected by all that's going on. I thought they might slide 'backwards' a little bit after the move and then get better...while Mom is adjusting pretty well herself, Dad has slid more than a little bit and I'm scared that it's not just going to be temporary.

TippyGirl,

Thanks for your question. Just a little background.. Back in Fall of 2004, normal pressure hydrocephalus (NPH) was the topic of both a TV show and commercial that drew attention to the possibility that individuals diagnosed with Alzheimer's or Parkinson's disease may actually have NPH. Both the TV show and the commercial presented NPH as a disorder treatable with surgery. I bring this up because these public awareness campaigns, suggesting that NPH is a more common and underdiagnosed disorder, may have raised unnecessary anxiety among our constituents that their friends or family members may have been misdiagnosed. In short, while it's obviously beyond my knowledge to tell you whether your dad ever had NPH, I can tell you just on an informational basis that NPH is a relatively rare condition in which the likelihood is slim that many individuals diagnosed with Alzheimer's disease actually have true NPH that can be treated with a shunt. Moreover, even with true NPH, the success rate for surgery is still not well known.

Despite what we know about NPH and Alzheimer's, it very well could have been that your dad was indeed suffering from NPH and therefore benefited at least with respect to his walking symptoms and bladder control as a proximate result of the surgical procedures. I guess what I'm suggesting is that while the NPH surgery may have escalated his AD (as you seem to believe), it's also possible that he could've been worse off had he not had the recommended surgeries. All in all, there's really no way to tell whether he would have been better off or worse off in the absence of these procedures. Regardless, you can take solace in the fact that given the professional opinions that were provided to you and your family, you made the best possible decision with the information that was made available to you at the time. Please keep in mind that this is by nature a progressive condition that would've escalated to this current stage in spite of any outside surgical procedures. If you'd like to discuss this in any further detail, please don't hesitate to call us at 800-272-3900. Thanks for posting on our online forum.