Dementia or hydrocephalus?

[Sailaway_today]

I am wondering is anyone else has had this issue, mom has been diagnosed with Alzheimer's dementia but will not accept the diagnosis, which was provid d by more than one health professionl. This was originally started when she lived at home and came under ****** NHS trust. Since moving into a care how much in ************** we have had to go through the whole process again, and have been told that we need to have a lumber puncture test to see if she has hydrocephalus, she is 83, she is very confused and demonstrates the signs of dementia, but we are having to put her through this procedure before anyone will then do anything else.

I'm really confused as to why we are having to go through this, and am wondering if everyone else has been through this. In addition to all this she is deteriating her memory is so confused but she is now becoming very aggressive and appears to be doing everything she can to get self thrown out of the care home, throwning things at staff refusing her tablets and generally being disruptive. It's getting to th point where we are going to have to look to move her as we are concerned the care home will say they can't cope with her. The odd thing is at times she is perfectly nice, very calm but just confused.

Trying to get any sense or support from anyone seems to be a challenge, but the mental health team are telling us they are not able to do anything until we have have this lumber procedure, but then what I don't know, and what happens if she says she is not having it, they will have to do by general anaesthetic as there is no way she will sit still and allow them to do it.

I am confused as to why it seems that we have to go through this before anyone will really advise us. She is not on the dementia unit at the current care home as she is still capable of looking after herself, but if we move her she will have to go onto a more secure unit.

Anybody having the same or similar issues?

 

[cragmaid]

Does anyone have a Health POA? I'm afraid I would not be subjecting someone to an LP without just cause or serious doubt, and to expect a Dementia patient to be able to control their body during a stressful and potentially painful procedure without sedation is cruel. Can one of the family please speak to the consultant who is ordering this to find out the reasoning behind it?

 

[Trisha4]

I agree with cragmaid. I don't think this is a pleasant procedure and I would need to have a very good reason for it before agreeing.


Sent from my iPad using Talking Point

 

[Primrose19]

Hi
We went through this when mum was admitted to hospital - they had seen something on the CT scan so we had to wait 10 days for a MRI scan. Have they done one of those?
The lumbar puncture is then to remove the fluid but we were told it would be done at a specialist unit - or possibly not at all, would need lots of discussion. Anyway MRI didn't show it so they got on with the dementia assessments which had been put on hold while waiting for the MRI.

These are some links or google hydocephalus and dementia (your post comes up too!)

http://www.alz.org/dementia/normal-pressure-hydrocephalus-nph.asp

https://www.alzheimers.org.uk/info/20007/types_of_dementia/108/rarer_types_of_dementia/6

 

[Amy in the US]

Hello sailaway,

I haven't been in your exact situation but have a limited experience with hydrocephalus. I have a relative who was diagnosed with hydrocephalus, and had to have a shunt placed for it.

Disclaimer: not a medical professional so take everything I say with a bucket of salt, and consult your own doctors.

You will have to ask the appropriate persons (the attending doctor at the care home, or the nursing supervisor, or whoever made this provisional diagnosis) why they think she might have hydrocephalus. It can cause confusion and memory problems, but it also has physical symptoms, notably sudden urinary incontinence and walking problems. One test for hydrocephalus is a spinal tap/lumbar puncture, but a CT and/or MRI are often done as well.

Again, I urge you to talk to the staff until you get some clear information and can better understand what is going on.

If your mother does have dementia/Alzheimer's, and she does not have capacity to make health care decisions in her best interests, do you have LPA, power of attorney, whatever it's called where you are, and will you be making this decision?

A separate issue you mention is your mother not accepting her diagnosis of Alzheimer's. Many PWDs (persons with dementia) also have anosognosia, which is an inability to understand that there is anything wrong with them. It's part of the dementia, and so the refusal to accept the diagnosis is less about denial (although that may play a factor) and more about their brain being damaged so that they cannot comprehend there is a problem.

Of course this is going to make things harder, in terms of explaining things to your mother or trying to get her to understand what is going on. It's possible she cannot understand and cannot make health care decisions for herself. That brings us back to the Power of Attorney/LPA question I raised above.

Many of us have been in the unenviable situation of having our PWD need a hospital stay, surgery, or other medical treatment and it's a very hard decision to make.

Again, it sounds as though you need more information to understand why they suspect hydrocephalus and want to do the spinal tap/lumbar puncture. Don't be afraid to make a nuisance of yourself, to get the information you need. Is there a particular staff member, or the manager, or your mother's GP, with whom you have a good relationship and can approach for information?

I also wonder if any of the folks at the UK Alzheimer's Society, and/or Age UK, could be of help to you? You might give them a call and see what their advice is.

I hope you are able to get a straight answer out of someone. Best wishes.

 

[father ted]

How awful for you....

I do know there is a condition called Normal Pressure Hydrocephalus, where an elderly person can display signs of dementia with poor memory, unusual behaviour, problems with mobility etc which on further investigation can be NPH which can be rectified by the fitting of a shunt.
https://www.shinecharity.org.uk/hydrocephalus/normal-pressure-hydrocephalus

Has details of the condition, hope this throws some light on it for you.

 

[lindad123456789]

I was diagnosed with hydrocephalus at age 51..11 years ago..had many of the same symptoms of dementia...it was only when the scan came back the neurosurgeons saw the blown ventricles & I was treated for hydro...so yes ..you can have the same symptoms!

 

[lindad123456789]

I was diagnosed with hydrocephalus at age 51..11 years ago..had many of the same symptoms of dementia...it was only when the scan came back the neurosurgeons saw the blown ventricles & I was treated for hydro...so yes ..you can have the same symptoms!

 

[Caroline1]

Hi all,

My mum was diagnosed with vascular dementia about 3 years ago. She had shown symptoms of unusual behaviour a number of years ago - probably more than 10 years. She started falling down, she complained of headaches and developed a tremor in her left arm. After my dad died in 2009, she came to live with me and I noticed that when she walked her gait was odd. She leaned forward, shuffled her feet and it was almost like she was fighting to keep her balance and she would often fall as a consequence. Her memory and thinking became problematic and she developed incontinence. This was when I sort medical intervention and she was diagnosed with vascular dementia. I accepted the diagnosis until a few months ago when I heard someone talking about normal pressure hydrocephalus and the symptoms seem to be an exact description of those shown by my mum. I have read up on the subject and there seems to be some hope that with treatment some of her symptoms might improve. However, she is almost 88 years old so I guess I am trying to ascertain whether the treatment would be too much or if worth pursuing?

Thanks in advance,

Caroline.