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Topic Dementia Confirmed Go to previous topic Go to next topic Go to higher level

By lynn On 2009.09.30 20:01
My husband's dementia has been confirmed. I can not believe the drop he has taken in the last 3 months. He's so anxious and won't sit still. He falls because he forgets to use his walker. I'm so tired of having to be with him every minute. He won't even take a nap. His PD meds use to make him sleepy. What's going on ? He is so impulsive that it's very difficult for me. We have arranged for assisted living in 4 days. I don't know how they're going deal with this. They specialize in dementia so I guess they know what to expect. Any advice.

By annwood On 2009.09.30 21:35
Lynn, I am so sorry to hear this news. I understand what you are going through at this time. I am assuming that his behavior has been strange for some time and that is the reason for the diagnosis. If it is any help to you, 40 to 60% of PD pts develop dementia. I think we caregivers are prepared for the physical problems but the cognitive and behavioral problems hit us like a ton of bricks. We watch our loved ones become someone else in a short period of time. My advice - understand that you are now caring for a 2 yr old that is impulsive, argumentative and who needs constant monitoring. It does no good to try to reason with him because he is unable to make and stick to a committment.

If the facility indeed specializes in dementia he will be in a locked unit for his own safety. He will most likely resent being there and attempt to talk you into taking him out. Don't do it. It is almost impossible for you to care for him at home - as you can already see. He does require constant monitoring and one person can't do it. Try not to feel guilty (easier said than done). Whatever he may say to you is really not your husband talking but rather this terrible disease.

Stay with us and we will walk with you down this road.

By lynn On 2009.10.02 21:12
Annwood. I know you know what I'm going thru. These last few months have been so difficult and now I know why. at this point, my husband is looking forward to the move. I'm hoping he continues to feel this way. We used a geriatric nurse to help us find a place and she tries to match the patient with a place. She's placed other PD patients there. Will keep you posted.

By dkleinert On 2009.10.03 00:51
Lynn - how long ago was your husband diagnosed? Was he just forgetful and impulsive before then it escalated? My husband seems to have hours when he is near "normal", then says or does something impulsive and "off", or "reasons" something in a strange that what you are experiencing? When you say it escalated quickly - what did you experience? THANKS for posting - it helps all of us.

By dkleinert On 2009.10.03 00:52
Lynn - how long ago was your husband diagnosed? Was he just forgetful and impulsive before then it escalated? My husband seems to have hours when he is near "normal", then says or does something impulsive and "off", or "reasons" something in a strange that what you are experiencing? When you say it escalated quickly - what did you experience? THANKS for posting - it helps all of us. I am so sorry you are experiencing this - it must be very hard to place your husband out of your home.....we are with you. Keep with us.

By Emma On 2009.10.03 05:15
Lynn, for what it's worth I think you are doing the right thing. If the facility is designed for people with dementia and they have other people with Parkinson's they will be prepared to care for your husband. As annwood said, he will probably beg you to take him home at some point, but having made your decision stick with it. My uncle put my aunt who has alzheimers in an assisted living facility and she gave him so much grief that he finally took her back home. Now things are worse than ever (for both of them) and they are barely struggling through each day. I know this is tough for you both. Hang in there.

For Donna - My husband has had dementia for 10 or 11 years now and it (along with the obsessions), not the physical symptoms of PD, is the hardest thing for me to deal with. For him it's been a very gradual decline in cognitive functioning. It started as memory lapses and the inability to learn new things like using a computer or figuring out the remote for the new TV. This is a man who has an MBA but he couldn't learn/remember how to write and send an email. Over time his executive function, the ability to problem solve and reason, has gone out the window. His visual/spatial skills are gone and his thinking is incredibly slow. He has a real problem with remembering the day and time too. He loses everything and I find stuff in odd places. Last night we were watching a game show and the word "wouldn't" was in a question. He went off on some convoluted thing about "wood" that I couldn't quite follow and I couldn't even begin to try to explain to you, but it was very frustrating. It is impossible to reason with him because his thinking is so strange at times and his judgement is like that of a 5 year old. The other day I found him standing in our front yard with his shirt unbuttoned and pants unbuttoned and unzipped. I'm sure that he just forgot to fasten things, but when I pointed it out he laughed. He really didn't see that it was an issue and that a neighbor or passerby might not find it so amusing. Yet, like you said, sometimes he's rational and "normal". His dementia was diagnosed when he had his first neuropsych exam, about 8 years ago, but I knew it before then. He has taken a dive in the past three months or so, both physically and cognitively so we'll see what's next.

By lynn On 2009.10.03 20:34
Dklienert- The doctor just gave me the diagnosis last week. My husband is in his 16 year of PD. He has had memory loss for a couple of years but I started to notice other things at the start of 2009. He had a couple of bathroom accidents when he was out. What I found strange is that it didn't seem to embarrass him. He started to get his days confused. We had previously used a driver who I let go months ago. He would continue to ask if the driver was going to take him. The biggest changes however have been his obsessions on items he can't find and his loss of impulse control. We would decide to take a nap and 15 minutes later he was up and dressed like he was late for something. I tell him almost nothing because if we have plans in the afternoon, he's asking me 10 times in the morning when are we going. He has no concept of time. Also, word finding is very common now.

By Cindy Bystricky On 2009.10.04 00:52
Lynn, if I may ask, How old is your husband? Do you think his dementia is ALL PD or can it be some of his age? I am asking this because my husband has also had PD for 16 years, he is 70 years old and experiencing some dementia. I think he is too young for his age to be effecting this dementia. I believe the PD is the cause of it in my husband's case. He has also had problems like those you mentioned, confusion, bathroom accidents, etc. Thank you for your info.......

By lynn On 2009.10.09 20:07
Cindy-My husband is 66. sorry, I know you didn't want to know he was this young.

By Reflection On 2009.10.12 18:26
Forgive me for weighing in. I've been lurking for a while but have not posted.
My husband was diagnosed with Parkinson's in 2000.

I believe the incidence of dementia is far higher than generally discussed.
I've clipped the results of two studies below:

In one longitudinal study:
"83% of subjects with PD developed dementia"

The results of a 12 year study in Norway:
"A total of 233 PD patients were included, and 140 patients - 60%....had developed dementia by the end of the study period. The cumulative incidence of dementia steadily increases with age and duration of PD and, conditional on survival, increases to 80% to 90% by age 90 years. Women live with PD longer than men and spend more years with dementia. At age 70 years, a man with PD but no dementia has a life expectancy of 8 years, of which 5 years would be expected to be dementia free and 3 years would be expected to be with dementia.
Conclusion: Dementia is a key part of survival in Parkinson disease and must be planned for in services for this condition."

By annwood On 2009.10.12 19:00
Thank you, thank you for posting this! My husband was a physician and I am a RN but we were told by his neurologist that the incidence of dementia of PD was only 20 %. I believe that is the stock answer. When I did the research for a talk last year it was evident that the incidence is at the very least 60%. I gave that statistic at a large PD meeting where my husband's physicians were present. They were upset and afterwards told me that people don't need to be frightened with that information. I was absolutely livid! How dare they withold that information. Needless to say I was not asked to speak at this year's meeting.

People need to know this. They need to make arrangements as if the dementia will happen and if it doesn't they can get on their knees and thank God. If you don't have a POA and Living Will in place you certainly can't do it after the dementia is evident. Any Will made at that point can, and will, be challenged. Fortunately we had all of our ducks in a row before the diagnosis of PD and I needed every bit of it after my husband dedeveloped PD (14 yrs post diagnosis and 3 yrs before he died - he was 78).

Please! If you are a PD patient or a caregiver make certain that all of this is done. I saw no problem in discussing it because I knew that I could have been the first to die and that is how we approached it. My poor husband was like many physicians - he felt that he would never die and he could beat PD.

Glad that you have joined in after a period of lurking. I hope that you wil continue contributing to our forum

By lurkingforacure On 2009.10.12 19:58
I have to add that there are some articles out there linking anticholinergics with dementia, whether one has PD or not. A ton of PDers take these meds and I don't know what the answer is, but this is something we should all know about. Here is one link, there are quite a few others:

My husband has often commented to me how "clear" his head is when he doesnt' take his meds, and I too wonder if the meds he takes are making things worse in some they say, sometimes the side effects are worse than the benefits. Sure would be interesting to see if someone taking mirapex who didn't have PD developed dementia, or what those stats were.

By karolinakitty On 2009.10.14 08:37
I wonder, i couldn't find any results yet,(am still searching), if there is any link to dementia with PDer's who have also had PTSD or Brain Injuries.

Jim will be 53 on Halloween and already has mild Dementia according to the test he took in the doctors office. I still have not got the results of the big cognitive test he took several weeks ago, but can't wait to see what it says. Jim has only been on PD meds for almost 10 months, i don't see the meds pushing on the dementia. However, he claims that when it's near the time to take the meds his mind gets more muttled. He feels that the med helps clear the mind.
Again i think we see the difference in patients with the progression of symptoms. His tremors are few but his mind is awful.

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