NPH or dementia?

My partner very recently died. He had been diagnosed as probable dementia and I cared for him over several years as he became progressively worse.
It was heartbreaking to see this kind talented man turn into a shadow of his former self.
Yet today I read that many people are misdiagnosed! That some may have NPH which doctors may confuse with dementia as the symptoms are so similar.
I had never heard of this condition, or that it might be treatable, and to my knowledge there is little information out there so people could ask for more tests instead of accepting the first diagnosis.
This has been so upsetting to think that I failed my partner in not finding more information and that possibly, just possibly, may have helped my partner.

Hi Susan … my condolences.


What is Normal Pressure Hydrocephalus (NPH)?


Normal Pressure Hydrocephalus.

Normal pressure hydrocephalus (NPH) is an accumulation of cerebrospinal fluid (CSF) that causes the ventricles in the brain to become enlarged, sometimes with little or no increase in intracranial pressure (ICP).

In most cases of NPH, the cause of blockage to the CSF absorptive pathways is unclear.

The name for this condition, ’normal pressure hydrocephalus,‘ originates from Dr. Salomon Hakim’s 1964 paper describing certain cases of hydrocephalus in which a triad (a group of three) of neurologic symptoms occurred in the presence of ’normal‘ CSF pressure – gait disturbances, dementia, and impaired bladder control.

These findings were observed before continuous pressure-recording techniques were available.

The phrase ‘normal pressure’ is misleading as many patients experience fluctuations in CSF pressure that range from high to low and are variable within those parameters.

However, normal pressure hydrocephalus (NPH) continues to be the common name for the condition.

Hello Susan
My condolences on the loss of your husband. I really understand the heartbreak of losing a loved one slowly and cruelly. I’m experiencing this very long goodbye.
In my eyes, you haven’t failed your husband. Caring for him for so many years is not failing. Far from it. Please don’t beat yourself up. Be proud, that you were there for him.

Hi Susan. I’m sorry for your loss. We have been trying to get a referral to a neurologist for my mum to see if she may have NPH which I found out about after a shock diagnosis of Alzheimer’s, but they don’t want to know. I think it comes down to funding. I’m still trying on this one but in the meantime my mum is deteriorating fast. More awareness of the condition would be really helpful as it can be treated in some cases. There doesn’t even seem to be much awareness in the medical community and it is their job to look into other possibilities. The only reason I started researching was because my mum has never shown the usual progression of Alzheimer’s so I was not convinced by the diagnosis.

Hi Stripes&Patches,
I posted yesterday asking if there was anyone else caring for someone with NPH. It’s been a while since you posted. Did you ever get a referral? I sympathise because it took literally years for my husband to get a diagnosis, during which time he deteriorated considerably.