When is it no longer beneficial to be taking medication for Dementia?

My mom is almost to the severe stage. She is still happy and she knows who I am, enjoys food, laughs at television, can sing patriotic songs, but she is otherwise out of it. She doesn't complete many sentences, but instead says a few words and then starts to sing. I stopped the Namenda and Aricept a year and a half ago, because it would no loner be beneficial as her cognitive decline was pretty far along. Also, those drugs can interfere with sleep and reduce the appetite. My mom now takes a seroquel 25 mg at around 8 pm to help her sleep through the night, and she also takes depakote 125 mg and l-tryptophan 400 mg one in the morning & one in the evening to moderate her mood. She doesn't like to take pills because she thinks she doesn't need them, so we use a pill crusher, and we open the capsules and dump them with her crushed pill into apple sauce or yogurt or ice cream. That might not be the ideal delivery method, as some medications are supposed to dissolve in the small intestine, some in the stomach, etc, but it works for us and her doctor has no objections. I am of the mind, in general, the less medicine the better. We also give my mom gummies for probiotics, fiber and multi vitamins, and she thinks they are gummy bears, so she takes them gladly. So she gets 6 "pieces of candy" daily!

CCRhea: Vonette suggested that your LO has lost the gag reflex. True?

A complement to all who have responded. Yes, this is a terrible and tragic disease with no medicine or help in sight. Doctors do not start morphine early on wandering and anxiety patients. Namenda and Aricept have been a misconception making pharma companies and medical profession rich. A calming medicine should be recommended and I for one am promoting that the GP enter the picture to address vitals and prescribe accordingly. The problem with hospice is the Medicare timetable.

YvetteN, agreed with your statements. However, some dementia patients get so agitated, paranoid, and anxious that not only are they in turmoil that is hard on them, it is also hard on their caregivers. So in those cases I have seen from experience that anti-anxiety meds are a huge help to mitigate those unfortunate symptoms of dementia.

My mother's doctor prescribed Aracept when she was first diagnosed with dementia/Alzheimers. As a result, she became paranoid and very difficult to control. My family and I decided that we would take her off any medications related to the disease. I told her doctor, "If you don't tell me it cures her, then no medication." Fortunately, he respected our wishes. Our goal was to focus on other areas of her health like nutrition and keep her as physically healthy as possible. She had no other health issues until she passed away two weeks ago from a stroke. Daily aspirin didn't even prevent that. It was our personal belief that all medications have side effects, so if it doesn't relieve pain or save your life, don't take any. Your family must make the decision of what you think is best for your loved one.

If your mom is in Stage 7 of dementia. Meaning unable to talk, ambulate, hold her head up, smile etc. She is probably headed to not being able to swallow medications too. Are you giving the medications for her or you? Does it matter if she has high cholesterol? Does she need vitamins? Thyroid? Anemia medications? People with dementia don't die of dementia they die of something like pneumonia, heart, respiratory, not eating or drinking. If you stop all medications I do recommend that she be on a hospice so comfort medications can be given if she gets infection, is uncomfortable and for your support.

GrammyM: " Confused" OR "Diverse?"

GrammyM....the reason the doctor gave..that the anti-anxiety medications could cause cancer seems to me to be not a good response.
Your husband has dementia...what will effect him more or cause his death first...dementia or a cancer that he may or may not have already. (cancer cells can be undetectable when very small making accurate diagnosis impossible)
I think his safety and for his peace of mind and yours an anti-anxiety medication would possibly help.
As to the wandering there are many way to track someone. There are chips that can be placed in the clothing or even a cell phone can be used to track someone. My husband had a wristband tracker system called CareTrack through our local County Mental Health Department.
Please let the police know that your husband has dementia and that he wanders. This way they will be quick to respond if you report him missing.
You can provide a current photo, detailed description this way they have the info if needed. Also let the fire department know so they can possibly tailor a response knowing that your husband might not respond if they call out in an emergency

GrammyM, we went through the motions of my dad wandering and climbing over the high wall to get out. He even took a train, bus or taxi into the city. We too were at our wits end, but we insisted he try out a nursing home. In hindsight we were not happy with the N/H, but had little choice. We felt he was safer and the doctor put him on strong 'calming' meds, for more control. It worked in one way, but physically messed him up completely. Perhaps you need to chat to a different doctor.

After reading all the responses about what meds should continue to be taken, what meds should not...no wonder the medical field is confused and diverse. As mentioned before, my husband's doctor indicated Namenda and Aricept are worthless meds. Honestly, folks I realize everyone is different, but these meds did absolutely nothing to slow or help my husband's Alzheimer's. Not the dosage which was increased, decreased, stopped, started, combined, isolated, etc. Also, my husband has a tendency to wander. However, the doctor refuses to put him on an anti-anxiety med. He has been found outside walking the streets, in the woods, even attempted to enter a stranger's home wherever he feels his day should take him. Mentioned this to his doctor as I am concerned my husband could be hit by a car, fall in the woods or arrested, but nothing has been prescribed. The reason---anti-anxiety meds could cause cancer. They also lead to confusion that may contribute to falls. So, the confusion continues...does anyone have a balance on meds for Alzheimer's patients. I explained to my husband's doctor it is impossible to watch him every minute. I try and do the laundry...he wanders outside. I start to cook and find him in the back yard. As a result, the house is a disaster and being a 24/7 caregiver I am stressed off the charts. He refuses to go to an adult day activity center, swore at a VA caregiver that came to the house to watch him causing the caregiver to leave within 15 minutes---I'm at my wits end. No one seems to be able to help---meds are given, but frequently changed. Husband refuses to shower and stinks like a skunk. No one wants to be near him! He has the furniture smelling, the carpets stink and I am ready to leave him. If there are any meds out there that really help Alzheimer's patients, no one seems to know what they are. I hate winter, but look forward to it. It's the only season of the year my husband does not venture outside because of the cold.

My dad was on Respiradal/Zoxadon the generic AND Alzam. In less than 10 months he went from fully functional with early dementia to being in a wheel chair and no-conversation. The side-effects of this med is so bad, I cannot understand why it is on the market, starting with the stiffening of muscles to brain damage. I kept saying it to his doctor, but the Home wanted it. He sang a lot beautifully, whilst in pain, and remembered every word of every song and I have loads of regrets about not stopping the meds, after I had researched its side-effects. He passed away 3 weeks ago, and if I could have changed anything, I would have never let him take those tablets. Once advanced, it serves no purpose, in my view.

My father has been on galantamine for 4 years and namenda for 1 year..His psychiatrist's opinion is that taking off the meds would create a worse decline (even though we don't see any benefit). His geriatrician agreed with this. Also we have not had negative side effects; that would have to be evaluated by his physician...

Gravi: You have to be very cautious with sleep medications. And why? Because they can hook you!

CCRhea: You should ask her doctor first and foremost. Do not self medicate.

llpetsitter
Namenda and Aricept our a take as a combination. Neither will reverse AD but from a frame of mind point of view try aricept alone. No guarantee of hope but the patient if cognizant might feel that he is getting some help i Physiological approach.

I think that the medication should absolutely be stopped in the latest stages when the person is unresponsive and subject to infections and bed sores. That is the part of my life I would be glad to do without.

But as many have said, there is little evidence that these drugs help and no evidence that they help a lot. Stop them one at a time, to see if she is a lucky one who benefits. Do not feel guilty if you decide to stop a medication which does her NO GOOD AT ALL.

The medication is not a cure, it is only intended to slow it down. With dementia alot of things are associated with that and one of those things is the immune system. The more the disease progresses, the weaker the immune system becomes. So it is really never a good thing to take her off the medication. My father is going the same thing right now. Make sure she always gets her medication.

I feel for you. I agree with the person who suggested taking her off one at a time. Namenda made my mom worse, she's currently on Arricept, and I am wondering if it's helping her.

My husband took Namenda for 3.5 years. The doctor took him off of it August 2015 because he had side effects of being overly sleepy and urine retention. He did quit talking a few days later and was less responsive to his surroundings. We tried smaller doses, but the side effects outweighed the benefits in his case.

Thank you CCRhea for the question as I feel many of us wonder this. I stopped my Mom's Exelon patch 2, maybe 3 times and vowed to never do that again. I felt she couldn't possibly be more confused but it still benefits her and those with her. I wrote the response from ferris1 on a sticky note to engrave on my heart. The collective wisdom here is such a gift.

Stopping depends on the patients status. In the first place, namenda and aricept working together were slightly effective in the early stages as a hope to all but actually in the long run were ineffective. If she can swallow I would continue aricept alone until they suggest morphine. This illness is a curse with no hope in sight for remission.

Touching heartfelt response from Grandma1954. I will carry your words in my heart. Thanks to you and everyone on this forum.

I struggle greatly with these questions. My brother lives in a nursing home, on the "independent" end - and once he entered there, they added two meds to the one I had gotten him down to, for his seizures. His seizures were very rare, and always at times where I could figure out the stress he was facing, and reassure him, so he got calm again.

I have both fear and anger against the current practices of medicating people, especially elders, for as soon as medicine sees frailty, they prescribe a pill for it. I tend to think our bodies are more like vision - some say that glasses ultimately make vision worse, for they make our eyes get used to functioning without the needed struggle which maintains strength and adds versatility. We can solve more if we are careful to use bright light when reading.

I do have a glasses prescription, and had a cataract operation on one eye, which improved a lot, to remove the cloudiness. But I lost my glasses a few months ago, and I do feel that I can manage, though I will find it easier to have the other eye done. And I got a pair of self adjusting glasses lens for each eye separately and those help for fine tuning tasks. So maybe the artificial assistance is good for short stress or needs, but ongoing is overdoing.

Yet in the complex, medicine-run residences, I feel like medications become the go-to solution, which patients don't need anywhere near the amount they receive, and the meds have the unappreciated side effect of remove the need for others to problem solve around how to work together to handle people better - learn to have short times of involvement, trade off staff if a crisis starts, train staff to notice how each individual thinks and to work to be alert to how they move best, and then, set them up to do so on their own, not do everything for them.

I know seizure meds differ some from Alzheimer meds, but all mood calming ones seem way over-used to me: since being there he has gained 40 lbs, and so he has a new diagnosis added: obesity. This one makes his life and ongoing movement, more difficult.

I was not able to continue to help him across the miles, so I agreed that he needed round the clock care and oversight, but I believe I could have done it better - if I was willing to make my life revolve around his care, which I was always advised not to do, and I would never want to be the Only person helping him. It is just a challenge that takes years, to see how to work positively with others in giving care!

I just visited him on the holiday, and we did two activities - brought another resident out with my brother, and the 3 of us sat out on a deck at a restaurant overlooking the river, for over 2 hours. Quiet, simple. Enough excitement for both of them. Helped them feel more able. My brother struggles to walk on his own, despite bal

Psychotropic meds are dangerous because of the falling issue.

My mom is 87 years old with advanced Alzheimer's -- I do not use any medications, and she is very well controlled because I walk her everyday in the park (seven days a week, and if it's too rainy I'll take her to the mall and walk)-- it took a year but I built her endurance she can walk a half mile a day with her walker. That helps prevent falls a GREAT deal, and helps her behavior. I also found giving her green tea daily mixed with strong cocoa drink--about a tablespoon of it a day (I make the tea very concentrated using a little water, and mix the cocoa in there, then dilute with soy milk)--I know it sounds funny but that made a big difference with her behavior. I have to help her with activities of daily living, but she's not bad behavior wise.

I would talk to her doctor.

The drug that worries me is Seroquel. It is a powerful anti-psychotic, psychotropic med, & it is used widely with dementia patients to manage their symptoms of agitation and anxiety. My mom, 86, has had dementia for 5 years & is in a residential care facility with 4 other residents. Recently, with her neurologist's support, we tried to slowly reduce & wean her off Seroquel. But it did not work, as her agitation increased. This was hard both on her & on her caregivers. So she is back up to her previous dose of 112.5 MG daily, spread out over the day. I am told this is a fairly low dosage, compared to others. There is no med approved by the FDA to manage the symptoms of elderly Alzheimer's patients. None. And there are no meds to cure this terrible disease or prolong life. Namenda & others may stimulate brain cells for awhile, but the disease wins anyway.

I discontinued the Aricept my husband was on when he entered Hospice. He had been on Namenda as well previously but I did not see any benefit to that given some of the side effects he had.
To tell the truth I doubt the Aricept had done much for him when we discontinued it. I did not see a noticeable decline after he discontinued it.
I also elected to discontinue a Statin he was on to reduce cholesterol.

At some point the medications to "slow the cognitive decline" will no longer work. It is a guessing game as to when the person has reached the point when the medication is no longer doing any good. And do you want to add another or not?.
Nothing will repair the brain and function will not return.
So the BIG question is...Do you slow the decline or allow the decline to continue at possibly a more rapid pace and allow the person to pass more quickly.
And who is to say how fast the decline would have been with or without the medication? Does it really do that much good?
Tough decisions to make and if you are like me your crystal ball is out for repair so you can not see what the future holds.
The only thing that you can go by is ..
What would my loved one want? Would they really want this to be prolonged?
At some point we begin to act selfish in not wanting to let go.
This is a once vibrant, loving person that is now unable to walk, talk, watch their beloved Cubs possibly win the Wo..not gonna say it and jinx it.....
I love this man with all my heart but I know he would not want to live like this.
Ok back on subject.
Follow your heart. Talk to the Doctor or to Hospice and ask them one simple question...."If this were your Mother, Father, Spouse what would you do, if this were you what would YOU want someone to do for you"?

Have you actually had the person checked for an actual deficiency? Deficiencies cause a wide range of problems, including memory issues. Coconut oil has been discovered to help with these issues and you might find it helpful to try coconut oil

My 97-year old mother who is in the advanced stage of Alzheimer's has been taking Aricept and original Namenda for nearly eight years. The medications helped to stabilize her symptoms during the early years. But I doubt that they are doing anything for her at this point. I am however reluctant to discontinue these drugs because I fear that she could progress more rapidly without them. There's no way to know. That said, you should not feel guilty about discontinuing these drugs. There's no road map for caring for someone afflicted with Alzheimer's Disease. Trust your instincts and feelings and have no regrets.