Expert: Mary Gordon - 12/3/2005

Question
There has been some debate in my family and among my 85 year old dad's current and former doctors regarding my dad's current diagnosis.  He has many of the symptoms of AD, and in my opinion is somewhere between stage 5 and stage 6.  On a good day, he seems more like a stage 5 but on a bad day, more like a stage 6.  Without my mother's knowledge (my dad's wife), a couple of my dad's kid's from a prior marriage 18 months ago took my dad to see a geriatric/forensic psychiatrist who said my dad did not have AD, but rather suffered from NPH.  Again without my mother's knowledge (these kids got my dad to sign a medical POA giving them the exclusive authority to make medical decisions for my dad), about three weeks later these same two kids took my dad to a well renowned neurosurgeion in Orange County, CA who performed brain surgery on my dad and installed a shunt. The neurosurgeon performed this surgery without having ever consulted my dad's neurologist up to that time.  It is possible this neurosurgeon was not made aware that my dad was a patient of that neurologist.  The neurologist had made a diagnosis of "probable AD" due to having ruled out vascular dementia and other possible causes of my dad's AD symptoms.

My dad has not had any improvement to his impaired gait and urinary incontenance since his surgery for NPH.  In fact, he seems worse now than before the surgery.  Whether this decline is due to the surgery or whether he would have declined this same amount anyway is uncertain.  My dad is also a diabetic.  His former neurologist when informed that my dad underwent brain surgery for NPH just shook his head in amazement.  He did not believe he had NPH, and said even if he did, he highly doubted that the benefits of the surgery would outweigh the risks in an 85 year old diabetic.

I have not been able to get much info from my dad's current doctors.  What do you know about NPH?  How is a diagnosis for NPH made?  It is my belief that my dad does not have NPH but rather suffers from AD, which would explain the lack of post-surgery improvement.

Answer
Hi Mark,

Wow, what an unpleasant family situation. It was so disrespectful of your mother's step children to highjack your father like that. Even if they had concerns about his medical treatment, you'd think they would have found a less drastic - and more diplomatic - way to get a second opinion, with your mother's involvement. I take it things have been tense for a while.

It may be that your father has NPH - only about a third to a half of those diagnosed are helped by a shunt - so even if the diagnosis is accurate, the truth is that shunt operations just do not work for everyone with NPH. Many people who undergo a shunt operation have substantial symptom relief. In some, the symptoms improve and then start to worsen again. Others benefit little, if at all. Even the experts are not able to predict perfectly who will benefit and who will not.

Your dad may also have NPH and AD at the same time. Many elderly people have a constellation of health issues concurrently, as I know you know. Its impossible for you to know exactly what might be going on without the ability to talk to his doctor about what tests were done, and why the neurosurgeion concluded it was NPH. It would be surprising if a respected expert would have installed a shunt without some solid reasons.

As you know, the big three symptoms for NPH are urinary incontinence, gait problems and dementia. There is no lab test that confirms the diagnosis of NPH. Any lab tests that are done are usually being done to rule out conditions that might cause similar symptoms - which is also how they diagnose AD.

The kind of things that can be done when looking to confirm or deny NPH can include a CT or MRI scan of the head: These scans give a detailed, 3-dimensional picture of the brain. They  cannot confirm a diagnosis of NPH, but they can show ventricular enlargement or other changes that suggest NPH.

Cisternography is not widely used any more. It highlights absorbtion of the cerebral fluid - essentially, they do a lumbar puncture and put a radioactive tracer into the fluid, and then take a series of images over a period of 12 -24 hours to track fluid flow and absorbtion.  

Other tests can include  a lumbar puncture (spinal tap) which involves  involves removal of CSF from the area around the spinal cord in the lower back. The CSF pressure is measured, and the fluid that is removed is analyzed for abnormalities that might give a clue as to the problem. Usually, more fluid is removed than is necessary for these tests. The idea behind this is that removal of a large volume of CSF helps relieve symptoms. (This is checked by comparing examination results before and after.)  This effect usually is only temporary. However, improvement of symptoms with lumbar puncture is commonly interpreted as meaning that a surgical shunt would be helpful in that person.

Here are a couple of good articles on NPH
http://neurosurgery.ucla.edu/Diagnoses/Adult/AdultDis_1.html#a2
http://www.aafp.org/afp/20040915/1071.html

The truth of the matter is that as upsetting as the high handed behaviour of your half sibs was the shunt was installed, right or wrong, and you can't change that. Its in the past.  He continues to deteriorate, so the outcome will be the same, whether the underlying cause is NPH that isn't helped by a shunt, or AD.

Was your father ever given any medications for AD such as Aricept or  memantine (often used in combination with donepezil).  As you likely know, these drugs don't reverse the condition, but they can slow down the progress in many patients, and sometimes are worth a try to see if they can improve his quality of life.

I really feel for you. Its hard to be in the middle of a family war - especially one that is essentially motivated by love, however misguided the actions are. Everyone tugging and pulling because they want the best for your dad. Is there anyway for all of you to have a family talk and discuss what has happened and what comes next as a unit? Your father's time is limited, no matter what you do - he is elderly and unwell, and is deteriorating.  It would be easier on all of you and kinder to your mother as his wife if you can find a way to work together to support each other through the coming challenges. There will be harder choices ahead that may cause more disention and you need to be working in harmony, or there will be bitterness ahead (i.e. at what point do you want palliative care only???)

Has your mother consulted with a lawyer about the medical POA and the circumstances under which it was obtained? I would think it might be very upsetting to her to not have any say about the medical treatment of her own husband. She should find out what her rights are, and what, if anything can be done.

Hope this helps. Thinking of you.

Mary G.
Toronto