My 89 year old mother has vascular dementia. Her new doctor affiliated with the dementia unit where she resides, has suggested that we give the exelon patch a try. My mother's cognition has really declined over the last two months and I am feeling a bit remiss in not allowing a try on it, but I have reservations. She did very poorly the two times that she was on Aricept, (bizarre behaviors) so we have been allowing nature to take its course. I have agreed to give it a try, but now I am second guessing this decision.
I was just wondering what experiences people have had in using this medication for dementia.
It is common for the patient to take both aricept/namenda and exelon. It is said that a pair of them brings more benefit for the drugs. You seem to worry that these drugs do some damage. Don't be. Surely you need to make sure there are no side effects. If there is side effect such as loss of appetite, stop it right away and tell the doc. Otherwise, these drugs themselves have no damage.
What you saw may be due to the decline of the dementia. My FIL had taken namenda and exelon for 1 year and half. he could not take aricept which caused loss of appetite. My FIL stopped those drugs due to too much confusion in the morning.
The drugs are supposed to help caregiving and make her more perceptive. Frankly this does not really help caregiving that much. My FIL continues to be confused and need special attention and now he no longer takes dementia drugs. He now takes antidepressant and antypsychotic drugs. He is in stage 7 of Alzheimers now. He is 90. He took namenda/exelon in the years of late 2006-2008.
The drugs for dementia (aricept or exelon or namenda) don't cause damage and they don't make the person decline. They may keep the patient at bay and they may live maybe 6 months longer at best.
If you see something is wrong due to aricept, it probably is the decline of dementia itself. It has nothing to do with the drugs unless they gave her bad side effects. The drugs don't stop the decline.
If you really think there are bad side effects, stop the drugs.
If you don't see any changes and she 89, you probably can ask the doctor to stop the med. if she also takes other drugs. Too many drugs are not good for her frail body.
Susan, Exelon is for Alzheimer's and not Vascular Dementia! Actually there are NO drugs approved by the FDA for treatment of Vascular Dementia. Yes, the doctor's throw the same drugs at Vascular Dementia that they do Alzheimer's but the two diseases are not the same. It is all they have to offer... so that is what you get. It's not a cure and it is not even going to stop the decline. Vascular Dementia's basis is oxygenation of the brain. Alzheimer's basis is amiloyds, plaques, and tangles. Logic would tell you that a baby aspirin for circulation would work better than a pill for an unrelated disease ... not proven but just my thoughts!
Then you have to ask yourself if you truly want to slow down her decline. Is she in a place in her life that she has quality of life and awareness of self? Is it improving her life or just extending the inevitable. Doctor's recommend these medications that have little or no chance of working and then make YOU feel guilty if you don't follow their instructions. .... while the Doctors are probably getting a nice kick back from the drug company for prescribing that medication. So in my view the doctor's are getting paid, your emotions are controlled by a medication that is not effective, and your Mom ends up with side effects. ... and if you don't go along then you are the one that feels guilty?
You have a right to refusal any treatment your Mom is offered. Doctor's don't tell you this but it is there regardless. Doctor's orders are really Doctor's recommendations! Our medical system does a pretty good job helping us live but they do a horrible job when it comes to dying! They are healers and this is a fatal disease with no cure and no effective treatment. The drug companies show minimal statistical evidence in specific situations and it gets broadened to .... this is going to give Mom back no matter what dementia she has. In fact it is not going to make Mom any better but has a long list of side effects to deal with.
We as caregivers and advocates we are programed to want to "fix" what is wrong. When we hear our loved one has this disease we want hope. We want something that is going to "fix" the disease. We have faith in the medical community to help us. So when they throw a "solution" in our direction we want it to work. We see the slick ads on TV and want to believe. Then when we get the facts, take a hard logical look at reality, and process the information we see that these medications may not be the best course of action for our loved ones. Then we feel guilt when we stop or refuse the medication because we have not done "All that we can"!!! Guilt because we can not "fix" it! Guilt because we can not "fix" it with a medication that is not going to fix it anyway? These are normal human reactions to this type of situation that we all wrestle with. But we have to go back to the fact that this is a fatal disease with no cure and no effective treatment. So how can we feel guilty? We are doing the best we can to give Mom the best treatment possible... and sometimes that best treatment is to refuse treatments that are ineffective
In my world, my responsibility is not to "fix" this unfixable disease that my Mom has but to help her live the best life possible and then help her die with dignity. I firmly believe in the quality of life vs the quantity of life. So I am not going to advocate for a medication that may extend the quantity of life with side effects the deteriorate the quality of life.
My Dad had Vascular Dementia and my Mom has Alzheimer's. Where Alzheimer's take a steady fairly predictable path downward, Vascular Dementia is at the mercy of any other vascular event. Dad's declines directly related to heart blockages, A-fib, and possible TIAs. There were periods of relative stability and then periods of very rapid decline. Each vascular event brought with it a rapid decline in his cognitive ability. The declines are a direct result of the circulation to the brain. He was on Aricept and Namenda for a while and it caused major digestive problems. They wanted to do a endoscopy!! NO... stop the memory meds!!
My Mom is not on any dementia medication because of the bizarre behavior and digestion problems. I have said no to these medications more than once. She is on anti psychotic medications that control her angst and anxiety despite the fact that there is a very small percentage increase of cardiovascular events with this medication in the elderly. I am in no way extending her journey through this disease but trying to make her as content as possible during the journey.
We are going to have these twinges of second guessing ourselves, especially when the doctor is pushing in another direction. We expect them to know best. But it is you that knows your Mom. If it has been tried before with bad results then why try it again? If you had made your decision to "let nature take it's course", there was probably a good reason. What has changed? Has anything changed other than the recommendation of a doctor who is probably getting a kick back and doesn't understand your situation with your Mom? Please don't feel guilty or second guess your desire for Mom to follow a natural path. Remember that you are your Mom's advocate. It is not your job to "fix" it but to make sure she gets what is best for her
Hope this helped in some way. Welcome to our little corner. We are all on the same journey as you and your Mom with our loved ones. We do understand. It is a great place to vent, ask for experiences and advice, through out those questions we don't dare ask anywhere else, and discover that we are not alone in this journey. So hang around a while
Exelon is for Alzheimers as Deb put it. So why did the doctor do that? You sure he understands that she has no Alzheimer's? Sometimes they may be confused by the record in a new home.
In any case, I really think you don't have to give her exelon. If you see there is any behavior problems as you mentioned, she may need antidepressant or antipsychotic drugs (low dose) to ease her behavior problems and her anxiety.
Given the old age of 89, she should try to take only necessary drugs. I don't think exelon is useful at this point and it wastes money too.
It is up to you to tell the doc. that you don't want exelon (I think you need to have health POA to do that.)
You probably need to observe how the decline due to the dementia is showing. So the drugs for the blood may help more than exelon.
Usually the decline (for Alzheimer's) is like a line that drops every once in a while: it goes down a little bit and stays stable for a while (months) and then it goes down a little bit again and continues. (Like you step downstairs on a long flat stair each time it declines.)
Vascular dementia has more to do with how the doctor can control the blood flow situation.
Also, alot of times the doctors know that the families want them to do anything or something to make their loved ones better. So it is easier to just prescribe something, rather than look like they are doing nothing. Also, they can keep the patient coming.
It dumbfounds me that my MIL with AZ has doctor appointments almost every week and there's nothing more wrong with her than AZ. I feel that unless she's got something bad going on or that she is non symptomatic of anything then she has no business going and the dr's have no business charging her. There are a ton of people with real ailments that want to see the dr, but these people are easy pickings.
For my MIL with AZ the aricept and namenda aren't able to do anything. The family gives it to her anyways so that they feel that they won't be blamed for not caring. Of course they ignore the horrible side effects that these medicines have and the cost.
Hopefully by reading the board postings, that you can make sense of what information is out there that can help you in your decision.
I agree 100% Mitsy!!! This is one of my pet peeves. These are not miracle drugs that will "give grandpa back"... and the flashy ads on TV suggest. "Modest impact"... or slight slowing of progression.... is the best they actually offer. This is only in SOME that take the medication. It does not work at all for many. And then you do have all the side effects. Now you have contraindication for other medications which can be rendered less effective.
Yep, the medical profession doesn't have anything else to offer so they give you these meds so they can "do something". Also the families want something so they give them hope in the form of a little pill... that is not what they claim it to be. They tell you to come back in 3 months, write the same prescription again, and make another appointment. Even the research group that Mom was with only tested every 9 months Yet her Geriatric doctor wanted to see her every 90 days.
Thanks everyone for your feedback. Since I posted here, my mother was hospitalized with a UTI and is now in rehab, so I have been running and not back here. The dementia has progressed since the hospital stay and she is now having trouble following direction, so I am really doubting the efficacy of Exelon at this point. I really feel like this UTI has exacerbated things for her.
Thanks again to everyone for their kind support...hope to be back here soon!
Susan, the UTI could very well be the reason for her recent difficulties. Any time Mom or Dad had a UTI there was bizarre behavior, loss of cognition, and general confusion. Most times they did come back a bit after the antibiotic had time to work but not always back to their previous level. As for the hospital stay... yes that will cause additional confusion and anxiety as well. There is no quiet, there is no routine, and there are all those strange people doing strange things that she doesn't understand. That all combines to heighten her anxiety, fear, and paranoia. Not to mention it is a new and different place that she has no idea how she got there. So that more than explains her recent decline.
Why did they put her in Rehab for a UTI?... just curious
I am just getting back to the board, as my mother returned to her AL last weekend. There's been no more talk about Exelon. Now we are trying to understand the extreme agitation that began about midway during her stay at the Rehab. The doc and psychiatric nurse believe it may be a side effect of the Risperdal that she's been on since July (2mg). They have re-tested for a UTI, but that has been negative. Or it may just be a protracted transition back to her AL. Whatever it is, she just won't stop walking and has this generalized anxiety. I have another meeting tomorrow. She is now requiring an increase in the level of care. While at the Hospital and rehab, she lost her ability to ask to use the bathroom.
Deb, to be honest, I'm not real sure why she went to the rehab. Initially I was told that it was to keep her on the IV antibiotics and provide physical therapy. The evening she was transferred, as soon as I helped her into street clothes, she walked out of the room and up and down the halls. Her white blood count was still high, so the MD wanted her to remain there. All in all, a very stressful and exhausting experience, as my sister, husband and me took shifts to walk with her and to help her eat. Dementia caretaking is not for the faint of heart!
Thanks for your input.
Demetia care giving is NOT for the faint of heart. It takes commitment, passion, dedication, and stamina. If you let it, it becomes all consuming.
Rehab is for those that can remember, cooperate, and have a level of cognition to follow the regime. Most rehab facilities don't have a clue what to do with a dementia patient. They expect them to self care, which they can't. They expect them to follow instructions, which they can't. Then when they don't they are labeled as stubborn, uncooperative, and in come cases combative or aggressive. The individual with dementia has no idea what the medical personel want or what they are doing and have absolutely no idea where they are or what they are doing there! All that want is to find a way out of that chaos. It's probably not the resperdal. It is more than likely nothing more than a dementia reaction to where she was and what was being done to her. As long as she was in rehab she might have even forgotten her AL routine so expect time for her to readjust. We can expect nothing but demented behavior from those with dementia. Yet many expect them to be "normal" and follow the rules of the general population. This only leads to agitation and acting out on the part of the individual with dementia.
Hopefully, now that she is back in AL she will settle down and get back into her routine. Routine Routine Routine.... Those are the three most important words in dementia care. You break the routine and you will pay for it! This is good thoughts that she will find her new routine