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Is dementia part of PD? My friend Gerry has shown some signs of disorientation and hallucination and his PD doctor has made a quick decision that this is early onset Alzheimers. Is it possible that adjusting PD meds might diminish the disorientation? Adjustments have helped the hallucination. (So does a good night's sleep it turns out.)

According to Dr. Lieberman of the NPF better than 30% of PWP get dementia, and the longer amd older patients, dementia hit more people. Sinemet, Permax, and amantidine among other drugs can also contribute to dementia, therefore creating a difficult titration and balance.

Dementia is a definite yes for some PWP, depending on the meds they are taking, the dosage, and the combination with other meds...but once again EVERY PWP is different/unique.

Unfortunately it is... as im beginning to see with my wife. Sinemet reg, CR, permax, symetrel are all in my wife's daily med plan. Sadly I must say that we have been extraordinarily lucky with her physical symptoms (ONLY slight walking problem) but her interlectual capability is beginning to become obviously less. Her memory and ability to concentrate on anything plus her inability to maintain a logical thought process is becomming ever so evident. So, if i dont ask many questions I'm safe.

The list was asked if any other CGs deal with dementia---welcome to the club! You are correct that dementia can be much worse to deal with than the physical side of PD, as I can testify since my husband is one of the unlucky 1/3 of PWPs who get it.

It begins gradually, and progresses relentlessly, in our experience. My husband did get good control of hallucinations with Seroquel for over a year, but now (as those who have been here awhile know) HE IS UNDER HOSPICE CARE IN A NURSING HOME, WITH END-STAGE PD AND DEMENTIA. It was necessary a few weeks ago to hospitalize him in order to find the right balance of meds, to control some episodes of combativeness, refusing meds, etc, which made it impossible to bring him home with hospice as I had planned.

Last year, I had posted a number of "SNIPPETS" from a book about managing dementia, and I will be glad to re-post them either to you offlist or if others are interested, on CARE. We who are coping with this need all the help we can get--and you will surely hear from other CGs as well. You are absolutely right that "he can't help it"---it is the PD, not the person. Sometimes it helps to remember that, but venting on CARE helps too !

FYI-- my husband's neuro said his dementia was partly due to meds, partly to the "progression" of the disease. Seroquel was helpful for us for quite a while, and now he is calmer thanks to Ativan when needed in the nursing home.

As most of you know, my husband was one of the few PD patients who got almost complete relief from dementia with Aricept. Since you mentioned Ativan, I wanted to tell you a funny story. When my husband got so sick in January, the Hospice nurse asked if we had any Ativan in the house, and I got out an old out-of-date bottle our Neurologist had prescribed when my husband's Dementia was so bad. The nurse called our Neurologist for another prescription and was turned down with the statement that my husband never got agitated enough to need Ativan. The nurse and I laughed about that since it was that doctor who had written the first prescription. My husband had improved so much with Aricept that the doctor had forgotten he had ever had agitated Dementia!

Yes, Yes indeed post the snippets if you have the time. Pehaps there may be someone who happened to miss them. I have only had "The 36 Hour Day" to refer to and my daughter in-law has it now or I would give you the author.

The Dr. (Neuro) gave my husband Seroquel last week or I guess on the 5 of May. The first night he perspired so bad you would have thought I threw a bucket of water on him. Ok I exaggerated! Perhaps a pitcher! He also started falling or collapsing and then on this Monday jerked a little then before I could get to him he fell backwards!! I did get to him just as he was hitting the ground to bread the fall to his head. So. I spoke with my nephew who is a Dr. of Pharmacology. He asked if my husband was getting enough water--a chance he was dehydrated. Or Hypotension (low BP) so he gets light headed. after the conversation top make sure that i;t wouldn't hurt my husband to take him off after such a short while I did it!! I think I'd rather have the hallucination!! My nephew also asked if my husband was taking BP Rx (yes) he then asked if he was taking any Potassium (No).. Well, f--i-n-a---l-l-y I spoke with (not the dr!!) the Dr's nurse and he recommended taking my husband off the Rx.!! Done. I then asked if he should be on Potassium and she said she'd check. I thought Blood work probably next. Nope, he called in a script!! Strange. I then checked with our Family Dr. and he said no- not according to the last blood work he saw!! So I'm not giving it to him. Never thought I'd be a pill pusher!! Now then the Neuro rec. Zyprexa. Only at night. (My husband was taking the Seroquel 1/2 AM and a whold at night 25mg ) the Zyprexa is 2.5! We shall see. Last night he was very restless. I know a man can't have to go to the bathrooom THAT many times!!

I do have a Layman's PDR and it is very helpful in knowing about the drugs we incounter. That is where I found out that the night time perspiring could be very dangerous!! Well I'll go I know you have other mail to read. I've missed a couple of days and have tons to read.

From "Dementia in Close-up: understanding and caring for people with dementia"
by Bere M.L.Miesen, pub. by Routledge, 29 West 35th, NYC, 10001
$24.99 + 3.99 postage

"The term dementia is used when the behavioural changes are a result of irreversible changes to brain tissue. Damage to or the death of brain tissue cannot be reversed with the current state of our knowledge......The behaviour of persons with dementia cannot be explained by the 'condition' of the brain alone. Extra information is needed to determine, for example, the influence of the person's personality and life history. (But that is another story that is discussed in the remainder of the book.)" (p.15)

"If it has been established that a person has dementia, then there are many possible types s/he could be suffering from....(which) will be briefly discussed. ...the possible causes will be addressed. ...If you look at the consequences of having dementia on the person with dementia, you will find a number of ...methods of communicating with the person. These are all attempts to influence the well-being of a person with dementia in a positive way." (p.14)

"..(a list) of difficulties in memory, actions, recognition of things, intelligence, insight, continence, reading, arithmetic, writing, language and self care...represents the real 'disturbance', or 'symptoms'. ...(a list of problems with) activity, social decorum, orientation, confusion, delusions and confabulation ...describes how' persons with dementia react to having dementia.....(a 3rd list) suspiciousness, aggression, restlessness, moodiness, and overt sadness refers to how it feels to have dementia." (P.16)

"The diagnosis of dementia can only be made after all other causes of the behaviour change have been excluded......most often the following examples of physical changes are listed:

  • sensory changes (deafness)
  • circulation (heart problems)
  • digestion (diabetes)
  • respiration (lung infection)
  • nervous system (dizziness)
  • ambulation/movement (stroke)
  • urinary tract (cystitis, kidney infection)
  • tissue growth (brain tumor)
  • poisoning (through medication interactions)

    "Before dementia can be blamed for difficulties in behaviour, the senses, nervous system, and medication regime must be examined...." p.18-19

    Dementia can only be considered when the behaviour doesn't change after medical treatment (for other conditions), help for any social changes or psychological problems such as depression have been tried. p.20

    "...without individual assessment to exclude any possible physical, social or psychological factors no diagnosis of dementia can be made"....ideally a multidisciplinary screening is best, but not always easy to come by. " One in 5 persons thought to be showing symptoms of dementia, and who undergo care assessment...are found not to be suffering from dementia....if treatable causes are found for the behaviours that look like dementia, the behaviours will disappear. Dementia is not will not go away.....100% sure diagnosis is only possible when the brain is examined after death.

    Primary dementia---
    In determining what kind of primary dementia (a person has) professionals can look at how quickly or slowly the symptoms became evident....which occurred,and in what combination...where in the brain the changes happen is important, and also types of damage. Age of onset (e.g.55 VS 80 ) is important, also whether others in the family (are similarly affected.) There are many types of dementia, Alzheimer's(AD) being the most common cause (60%)

    Secondary dementia--
    ...damage to the brain as a result of damage elsewhere in the body, when it appears these abnormalities are not or no longer treatable....e.g. in PARKINSON'S DISEASE, prolonged unconsciousness, untreatable heart, circulation, or thyroid problems....early intervention can help avoid secondary dementia, but often the immediate family can't convince the person to get treatment, as the patient says there's nothing wrong.(adapted, pp.25-26)

    These snippets refer to the effect of dementia on memory.

    "There are very few arguments to suggest that PWD do not react to what happens to them (or) feel that strange things are happening to them. Hence we speak about an "awareness" similar to that in patients who know/feel they are going to die. This...will be referred to as "awareness context"...

    "Information coming in through the senses ends up in memory" In remembering something a PWP "expresses something that once made an impression on her and was imprinted into memory...(and can then be) retrieved for expression." Here are the author's "Seven assertions about memory":

    1. All factors that can negatively affect the process of making impressions, imprinting them into memory, and expressing (recalling) them in ordinary persons can also affect PWPs.

    2. As time goes on, fewer imprints are made of new impressions.

    3. As one ages, the total number of imprints ever made are reduced.

    4. The older one becomes, the less information they can simultaneously process (take in as impressions and imprint in memory.)

    5. The process of impression formation, imprinting, and expression is favorably influenced when multiple senses are used together.

    6. Recognition of imprints is easier than retrieval of imprints.

    7. The preceding assertions differ for each of the senses (pg.37)
    Since persons with dementia do not imprint new impressions, but continue to live, how do we make contact with them?

    The author suggests:
    "Whatever you talk about must last long enough for them to experience it. ...everything they are taking in through their senses must be as clear as possible. " Example: if you are both looking at the same thing, you can talk about it, but if you move on to something else and then return to it, the person with dementia may not know what you are talking about. This explains why when you visit a person with dementia in a NH the fact that you were there may be forgotten after you leave, and you are asked why you don't come to visit. Also, as you prepare to leave, the PWP may cling to you are try to prevent your going, but soon after you leave and the stimulus is gone, it will be forgotten and the person will not continue to be upset. (CHF NOTES that this sounds like the child who cries when mother leaves, but is soon playing happily !)

    "In short, you must be sure that the person (or thing) you are speaking about remains tangible to the person with dementia," and also the converse, "when something seen triggers fear, insecurity or discomfort, remove the 'thing' from the visual field and these feelings will disappear also."

    During the course of dementia, but certainly not in the early stage, a point is reached where the person with dementia can recall impressions from childhood, but nothing from later experiences of old age, for example. "This has far-reaching consequences for their experiential world, for how they understand what is happening to them now." A PWP may not recognize a mature son or daughter who is visiting, yet will correctly identify them in an old photo from their childhood. The PWP may thus not recognize the older grandchild s/he greeted so happily in the past .

    "In short, be careful to speak more about distant past time than the present to the person with dementia. Reminisce with them. " It is a problem for nursing staff, who cannot do this, as they haven't known the PWP earlier. For this reason the author believes all NHs and care facilities should note life history information of residents. (pg.47)

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