Rapidly Progressive Dementia?


#1

Hello!

My name is Oana  and I would like to address a question on behalf of my mother. Unfortunately, she cannot speak for herself and that is why it is me, her daughter who will seek for advice and guidance.

My mother has been diagnosed with Parkinson 7 years ago-at the age of 59; the symptoms were tremor and muscle rigidity in the right hand. She coped well with the symptoms and she used to be a highly active person, very talkative and very ambitious, doing daily exercise to keep fit (she wanted to have a knee replacement as she suffered from bilateral gonarthrosis).

In February last year, she agreed upon a change of treatment for Parkinson, although the Parkinson symptoms did not get worse. This was the starting point for the dramatic changes that marked the second half of last year. She was sleeping almost all day long, she was drowsy all the time. From a highly active person, rational, who was able to use electric appliances and take care of herself, she gradually became unable to take care of daily tasks. She became unaware of time, of how to use the phone or the TV remote control, she couldn’t  do her daily crosswords anymore. Taking care of herself was no longer possible. These things  became visible gradually from May last year and we realized the full dimension of the changes in August-September. First she started complaining about small things like not being able to use the phone. Then she was not able to watch TV anymore, couldnt focus and couldn’t take care of herself. From a very talkative person she became quiet; it is impossible to get a more complex answer than yes/No from her. Even that it’s not something you can rely on. Occasionally, she becomes very agitated, she starts talking with her normal voice, but she has bad episodes of hallucinations;however, she is able to recognize us.

She was taken to the hospital in October and a cognitive regression on a background of deep depression was suspected; in November, as she refused to eat and drink, she was taken to another hospital and it was then that she was diagnosed with dementia.

The diagnostic fell hard on us all. We have been wondering how come such advanced state of dementia could occur in such a short span of time of only 6 months. We have searched for answers in the clinics and hospitals around us. However we could not find any and something is definitely not right. 

This is why I wanted to ask if any such case was ever encountered. Is it possible that such advanced state of dementia  to occur in 6 months? Should we accept the diagnostic or should we make further inquiries?

In case anyone has any recollection of such a case of rapid dementia progression or if anyone has any suggestion or if you need further information in order to give an answer, please don't hesitate to contact us. We are in desperate need of some help!

Any answer will be greatly appreciated. Thank you in advance!

Sincerely,

Oana V.


#2

Hi Oana,

I can only give you some thoughts on this, I do not know whether that is any help, but here goes:

Was your mother diagnosed with Idiopathic PD 7 years ago?

Did the person or team who made the dementia diagnosis specify what kind of dementia your mother suffers from? When her treatment changed in February last year did they not notice that it was not an improvement. Common sense dictates that you only change treatment to improve things, after all PD is not curable, it is symptomatic treatment only. I presume you(and your family) put your questions to the consultant(s) too? Did they say your mother was unlucky, these things happen with PD, etc?There must have been some indication of change in her condition not recognised by a lay person, but obvious to a neurologist, to have triggered the new treatment? .Have you tried a second opinion? Did your mother see a Parkinson specialist? What I usually see , when I attend support groups is either slow progression of the disease or from the start (or very soon after this) a faster decline. Sometimes this indicates a Parkinsonplus condition. Hospitalisation usually makes matters worse as the drugs are often dispensed at times that the patient is not used to. What did your mother's GP say? He/she must have seen her over the course of 7 years regularly? 

I hope you find answers to your questions , I can understand your reluctance to accept the situation.

Best wishes, Kate


#3

Oana, I agree with Kate.  I also sympathise with your mother and your family.  My husband and i both have PD and dementia to varying degrees.  The PD is very depressing as you keep losing bits of your ability to live the life you have done.  The dementia is sooo horrible that there are no words to describe how the victim feels, when under attack.  Ours, at this time, does not remain, thank God.  So good to see a daughter trying to get help for her mother.  Jaffy


#4

Hi Oana. So sorry to hear about your mother. My wife has had dementia (probably Alzheimer's) for some years now. She has also started to have Parkinson's symptoms and has been on Sinemet for several months. We have been told she may have PD as well as AD or it may just be that she has some symptoms that are similar. I know from reading about dementia that some unlucky people can have several different forms of dementia and can also have PD in addition to dementia. So it seems quite possible that the dementia your mother has may not be directly related to the PD.

Do you know about Admiral Nurses? They exist to help people who care for loved ones with dementia and those they care for. You can find out whether there are ANs near you:

http://www.dementiauk.org/what-we-do/admiral-nurses/

If not  -  there aren't that many  -  there is a direct phoneline you can use (details at the bottom of the linked page). I'm sure you will find a conversation with an AN helpful.

Take care.