Are dementia meds really helping?

Posted by pattyinal @pattyinal, Jan 26 10:00pm

My husband has been using Exelon patches and taking Namenda for several years with an MCI diagnosis . When he asks , “What’s that for?” and I tell him it’s for his memory, he says, “Well it’s not working!” He seems to be right. His memory continues to decline. But, maybe it could be worse, so I’m afraid to stop it. Is there a point at which you can know the meds are no longer slowing the process? Is there a point when you can know MCI has progressed to Alzheimer’s?

Wow, you have asked two really important and difficult questions. I am not a doctor, but I have the benefit of hindsight. Looking back, I would have taken my dear mom off of those drugs after three years or so. If doctors were really honest, they would tell you that those drugs do not prevent, slow or fix the problems associated with dementia. Here is a quote from the Mayo Clinic: "In Alzheimer's disease, many chemical changes take place in the brain. One of the earliest and biggest changes is that there is a decrease in a chemical called acetylcholine (ACh). ACh helps the brain to work properly. Rivastigmine is an acetylcholinesterase inhibitor. It slows the breakdown of ACh, so it can build up and have a greater effect. However, as Alzheimer's disease gets worse, there will be less and less ACh, so rivastigmine may not work as well". The decision is up to you and your doctor, but as my mom got more and more prescriptions for various ailments, Aracept and Namenda just added more to her daily pills. I honestly saw little benefit.

The change from MCI (mild cognitive impairment) is gradual and different from person to person, but I knew that my mom was well in to her Alzheimer's disease before her doctor changed the diagnosis from MCI to Alzheimer's. That still remains a mystery to me. I am hoping that most doctors are more educated now on the subject and will change the diagnosis earlier. Mom's diagnosis of MCI lasted at least 5 years, and she was well into the middle stages. In any case, you are asking very good questions. Virginia Naeve (www.anewpathformom.com)

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@pattyinal
Such a great question! Have you discussed this with your husbands doctor? Besides the continued decline in memory, does your husband have any other side effects? Skin irritations seem to be the main cause of discontinuing Exelon. Has this been a problem? Maybe it would help to make a list of any and all changes you’ve seen in your husband and discuss these changes with the doctor. One important note: don’t stop or lower the dose of the meds without talking to his doctor! It can be too abrupt for his system. Do you have an upcoming appointment?

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He seems to have no side effects to any of his meds. We have discussed whether or not to continue meds with his doctor who says, it’s hard to tell. It could be worse, so let’s continue with present plan. I guess, if it ain’t broke, don’t fix it.

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@pattyinal

He seems to have no side effects to any of his meds. We have discussed whether or not to continue meds with his doctor who says, it’s hard to tell. It could be worse, so let’s continue with present plan. I guess, if it ain’t broke, don’t fix it.

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@pattyinal Sounds like you have a good plan. I hope all goes well for you. Are you also taking care of yourself? Seeing friends? Getting out of the house? Be good to yourself!

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My wife has early onset Alzheimers and her neurologist put her on Donezapil. He keeps reiterating that my wife needs to be on this med because if she stops taking it, she will quickly regress to where she would have been without the drug. That scares me so I make sure she doesn't miss a dose. However, I have also read and have been told by the same neurologist that it does not slow the progression down but rather helps with symptoms. I have heard that curcumin helps with slowing the disease and according to one doctor reverses the disease. In discussing this with my wife's neurologist, he said if that were true, he would refer everyone of his patients that direction. So, I don't know if meds do anything or not. I am just going to go with what the professional says. He seems to know his stuff. Yet, having said that, there is a ton of potential side effects to the med.

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@greff

My wife has early onset Alzheimers and her neurologist put her on Donezapil. He keeps reiterating that my wife needs to be on this med because if she stops taking it, she will quickly regress to where she would have been without the drug. That scares me so I make sure she doesn't miss a dose. However, I have also read and have been told by the same neurologist that it does not slow the progression down but rather helps with symptoms. I have heard that curcumin helps with slowing the disease and according to one doctor reverses the disease. In discussing this with my wife's neurologist, he said if that were true, he would refer everyone of his patients that direction. So, I don't know if meds do anything or not. I am just going to go with what the professional says. He seems to know his stuff. Yet, having said that, there is a ton of potential side effects to the med.

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Good morning @greff . Here is a link to an article about the use of curcumin: https://alzheimersnewstoday.com/curcumin-plant-extract-possible-alzheimers-treatment/
You will notice that it is only in early research stages.
As for donazapil, it will help with managing some symptoms, but cannot alter or reverse the disease. AD is a terrible disease but researchers are working hard to find an answer. Your doctor is right, donazapil had side effects which is why they start on a low dose and slowly work up. This can help minimize side effects. I wish you the best in caring for your wife.

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@becsbuddy

Good morning @greff . Here is a link to an article about the use of curcumin: https://alzheimersnewstoday.com/curcumin-plant-extract-possible-alzheimers-treatment/
You will notice that it is only in early research stages.
As for donazapil, it will help with managing some symptoms, but cannot alter or reverse the disease. AD is a terrible disease but researchers are working hard to find an answer. Your doctor is right, donazapil had side effects which is why they start on a low dose and slowly work up. This can help minimize side effects. I wish you the best in caring for your wife.

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Thank you for your reply. I am a research nerd. I think it goes along with my profession. I hope someday, they will find a cure. I just pray that God will comfort my wife and also give me strength to love her through every challenging stage and symptom.

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That is the mantra of all caregivers.

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@greff

Thank you for your reply. I am a research nerd. I think it goes along with my profession. I hope someday, they will find a cure. I just pray that God will comfort my wife and also give me strength to love her through every challenging stage and symptom.

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He will give you the strength to care for your wife as He would have given her strength to care for you.

Our local nurses association provides care and respite for relatives who care for Alzheimer’s patients at home.

They provided around the clock care for a friend who had end stage cancer. I hope you have a similar group to offer respite care at home… or a place that you approve.

I do not know if Medicare or other insurance is required.

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I can see you forming a men’s or spouses group who are taking care of a loved one.

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I plan on attending a support group soon. I have a co-worker who travels about 90 minutes to take in a meeting for caregivers. We plan on going together one of these weeks. My wife's medicare doesn't kick in until December. I plan to check out home health services, along with any other help we can get when the time comes. I plan on being proactive and remodeling my bathroom, making it handicap accessable. I can do the work myself, which will save money. I also plan on moving laundry on the main floor, eliminating going in the basement, where the electrical panels/breaker boxes are. Besides, she is going to have balance issues down the road (she doesn't.nwed to take a header down the steps). Alot to do. This website is awesome as it makes me more aware of what nneds to be done, what to expect, and just knowing that we're not alone in our struggles. 😀

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Yes, it is wise to plan ahead. You have enough to do when the time comes that she needs more care. My husband and I remodeled our home between 2005 & 2007 with just the plans that you mention. We completed remodeled the bathroom so we could install a stacked washer and dryer when the time came that we could to manage the basement steps. The kitchen was completely remodeled and other thing were done. Then the flood of June, 2008, destroyed our home and we had to move. We looked for home with no steps or stairs, and were fortunate enough to find one in our price range. I refused to purchase a home where we would have a mortgage at our age. My husband was 79 and I was 74. When he became so disabled that he needed a walker and then a wheel chair, we could come in through the attached garage into the laundry room without even a bump of an inch. Made all the difference

Best wishes to you and your wife, I know you will be fine with God's help.

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@rmftucker

Yes, it is wise to plan ahead. You have enough to do when the time comes that she needs more care. My husband and I remodeled our home between 2005 & 2007 with just the plans that you mention. We completed remodeled the bathroom so we could install a stacked washer and dryer when the time came that we could to manage the basement steps. The kitchen was completely remodeled and other thing were done. Then the flood of June, 2008, destroyed our home and we had to move. We looked for home with no steps or stairs, and were fortunate enough to find one in our price range. I refused to purchase a home where we would have a mortgage at our age. My husband was 79 and I was 74. When he became so disabled that he needed a walker and then a wheel chair, we could come in through the attached garage into the laundry room without even a bump of an inch. Made all the difference

Best wishes to you and your wife, I know you will be fine with God's help.

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Thank you. God is awesome. He always makes a way.

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