Anyone see any benefit from the dementia drugs?

My husband died 10 years after his Alzheimers diagnosis He used some of the usual RX drugs, but I could not see any effect. I also gave him coconut oil, and Baccopa. He remained cheerful and grateful and appreciative till the end.

The only benefit that I could see with my Mom's regimen of taking these drugs was the hope that it gave both she and I in taking them. And they are expensive. The drugs are not supposed to improve the memory, just slow down the loss of it. Having seen my Dad with Alzheimer's and now my Mom with Senile Dementia, I can't say that there was much difference in the progression of the disease. Hope this helps you make your decision. I know it is a difficult one.

I gave my husband coconut oil (1-2T a day in coffee and cooking), niacinimide (B-3) daily, bacopa (daily- an herb from India), and lots of turmeric in cooking. He lived for 1 years after his alzheimer's diagnosis, remained in good mood, very expressive of appreciation of me and his home. I continue to take these supplements as I have the disease in my family.

Exelon is for Alzheimers and
Parkinsons. My father in law suffered from Alzheimers for about 10 years before he died at age 85. The rapid progression of his dementia did seem to slow once he started on Aricept and Namenda, but eventually he even forgot his son and had just started to forget his wife when he passed away. I never saw a reversal of his symptoms on the Aricept and Namenda the way I saw a reversal of my Mom's dementia on Exelon.

The Exelon is for Parkinson's patients, right?

This is something that I have difficulty understanding. It's been stated on this thread and is what the official comments state and what the doctors say, but, I just don't get it. Supposedly, the dementia meds Aricept and Namenda can keep the person at the level they are functioning at longer, but, they cannot slow down the disease. I just don't see how that makes sense. Can someone explain it? I'm really serious. It sounds like a contradiction to me.  Or they promise you that it can keep the symptoms at bay, but, they can't slow down the disease.  I have trouble with those professions. 

Two years ago my mother at 88 began to think I was her sister rather than her daughter. She also was having so much difficulty talking that she had stopped her daily phone calls with her (actual) sister. We got her a prescription for Exelon patches. The effect was immediate and amazing. She still has memory issues, but for two years her memory for loved ones is still intact and still loves to talk! In her case this is a miracle drug.

Mother has been diagnosed with beginning stages of alzheimer's/ pleasant dementia. I am with her every day in a Personal Care Unit at a Senior Facility. She is afraid when she can't remember. Other than that, she knows what she wants, she is social, she asks what day it is, but can think through matter and come up with good judgment decisions and good conversation. She takes Aricept. Because of her age, 99, people think and assume that she is incompetent. I am blamed for her decisions regarding when she is full at meal times, when she wants to go out for lunch or go to pick up the cat at my house to bring back to her apartment for a (day) visit. Finding her exciting things to do perks her up. Her memory is better when she is stimulated by a challenge/ activities.

This next opinion is taken from Web MD; "Donepezil (Aricept) may improve memory, awareness and ability to function." Isn't this contradictory to the previous post from Drugs. com?


Now let's see what the leader in Alzheimer's disease, (Alz.org) has to say about Aricept; "(it is used) to treat the cognitive symptoms (memory loss, confusion and problems with thinking and reasoning from Alzheimer's disease." Also, "(it can) delay worsening of symptoms for 6-12 months in about half the people who take it." What kind of odds are those?
As you can see, there are mixed opinions all over the board with this drug. My mother went from stage 3 to stage 6 in 3 years while taking it. I saw no "leveling off" in one stage, just a moderate decline in mental process. It's a flip of a coin as to whether it will work or not for your loved one, in my humble opinion (given the research).

Taken from Drugs website;
"Aricept can cause side effects that may impair your thinking or reactions." Isn't that why they are taking it?....to IMPROVE (not impair) their thinking and reactions???? What the heck! I think I'll have another talk with the gerontologist about this.

Sounds interesting. As a diabetic, I'm interested in the Nattokinase. I'll has ask my endocrinologist about it. Thanks.

6 years ago, my dad tried Aricept for a month and it made him very over stimulated and anxious. He has taken mirtazapine (an antidepressant) at night to help him sleep for 6 years. He also has taken curcumin and fish oil for these years. He has slowly progressed to the deep middle stages of alzheimer's over these years. I gave his serrapeptase and nattokinase recently for one week and began to freak out because he was becoming more lucid with each day. I stopped because with this lucidity came old behaviors of frustration and being more demanding. Was he going to go through some of the older stages as inflammation (including amyloid plaque) was clearing out of his body? I stopped and decided to present the possibility with my mother when/if the right time presented itself. She had been at a rehabilitation facility after surgery and I was caring for him during this time. It seemed both good and bad at the same time. He was questioning things more and less of the well behaved young toddler he had become. Then again, perhaps he was simply more lucid because of the one on one time (basically, occupational therapy) he was receiving from me. My mom had grown weak, tired and ill and was not able to give him much attention. She was emotionally spent as I was after three weeks of caring for him. I will be shocked if anyone knows anything/advise about serrapeptase and nattokinase for memory loss. Look it up and your may be tempted too.

Shipjean,
I suppose that he had MRI's. Is that right? I notice you said brain scans. And they are pretty confident of the Vascular Dementia diagnosis? I'm just curious as to how his progression has been so gradual. When did he go on the dementia meds?

It's not that I doubt it, I just am a little surprised. I suppose that each person is different and it can take longer for some to progress. It's just that the people that I know with Vascular had very rapid progression. The Alzheimers patients seem to progress over quite a few years, from the people that I have seen.

My cousin went from running her own household, paying bills, driving, etc. to being unable to do anything for herself within a few months.
Then within a year, she was double incontinent, wheelchair bound with no short term memory and very little long term memory. She saw a Neurologist, had MRI and they diagnosed Vascular, possibly mixed with Alzheimers. So, she has some rapid step down, but also steady decline.

I can see your dilemma.

Sunnygirl1,
His dementia has developed slowly. His first noticeable symptoms were in 2006 when he was having TIA's; he had 95% blockage in his carotid arteries. His cardiologist first uttered the "words" vascular dementia in about 2010. However, he had testing in 2008 and was diagnosed with mild cognitive impairment. At that time, he was having difficulty with short term memory and spatial problems.
After his stroke in 2014 he was diagnosed with moderate vascular dementia and continues to have that diagnosis today. Since the stroke, his short term memory is much worse and he is now unable to be left alone. He also developed emotional problems with outbursts, crying, uncontrollable crying, etc. which are controlled with medication.

He's now blind in his right visual field (both eyes) from the stroke. His emotional problems had already started before the stroke, they just got much worse afterwards. The neurologist said the dementia was evident in the brain scans and the build up of plaque was probably the cause for the stroke.

So, you can see that his diagnosis was a gradual process.

Shipjean,
I've always read that Aricept and Namenda are not for patients with Vascular Dementia, but I suppose they think it could help. I suppose it's a personal decision.

How long ago since your husband was diagnosed?

My husband has vascular dementia and has had a hemorrhagic stroke. Before the stroke he was exhibiting symptoms of PBA, having short term memory loss, and irritability. Everything got worse after the stroke and has had many medications added including anti-psychotics and changes to anti-depressants. The neurologist also added Aricept and Namenda. When I questioned the psychological advisor about the Namenda (it is expensive), I was told that it is thought to add neurological support; some professionals think it helps, some don't see any advantage in managing vascular dementia. I was told that the key to managing vascular dementia is control of the cholesterol and blood pressure.
My husband can still do his personal care, but he needs someone to help him remember, prepare meals, and someone to supervise him as he makes unwise decisions and can't remember how to use the channel selector, how long someone has been gone, sometimes forgets how to use the phone.
I resent paying so much for the Namenda , but the neurologist said if I take him off he may suddenly decline; he is considered to be stable for now.
It's just one more problem...leave him on or take him off.

Aricept (active ingredient Domezapil) was never intended as a cure, but if prescribed early enough (and I do mean, early), then it slows down the inevitable progression of the disease by inhibiting the harmful processes that are going on in the brain. What our doctor said was essential was the addition of an anti-depressant which would calm the inevitable panic as the patient cannot remember where they are or what they have just said or are supposed to be doing; at a later stage, they just don't care. My friend was singing and waving her hands one year while the previous year she would have been shouting with frustration. Alzheimer's /dementia are slow killers. And, like snowflakes or fingerprints, every single case is unique - there is no pattern.

My wife has been on Aricept, Exelon patch and tablets, and Namenda, successively, and if any of them caused any slowing of the progression of the disease, it was imperceptible to me.

Windyridge, yes, it is extremely hard to watch a loved one decline with dementia. Having gone through it with both my mother and my husband I can say that there is a special kind of pain when it is your life partner, the person you expected to grow old with, who is slipping away little by little. Give Mom all the support you can!

Even if you don't want to consider dementia drugs at this time (which I understand), keep in mind that there are other drugs that can help if behavioral issues become a problem. If Dad becomes anxious, depressed, belligerent, paranoid, there may be a medication that can help. It may also happen that at some point Mom could benefit from counseling and/or medication.

This is a long and tough journey. Those embarked on it should have all the help they can get!

Lots of good info, thanks again to all.

We will probably leave well enough alone for now. Dad has always refused any testing but all behaviors indicate ALZ. Many of you know how hard it is to watch your beloved spouse decline. My Dads decline is soooooo slow........I'm surprised that mom is holding up as well as she does.

Don't count on any of the dementia drugs to slow the progress of the disease. That is television commercial territory, not proven fact.

But each of the drugs has some benefit for some people. Not a large percentage of people, alas, but for some. It may be worth trying one or more for that reason.

As science has learned much more about the causes and progression of dementia the new drugs being tested now (in in a couple of cases just released) may be more effective and for a more targeted population (specific type of dementia). Seeing a doctor who keeps up-to-date on dementia treatments is important.

(Note that there are only a handful of "dementia" drugs on the market. Anti-anxiety and antidepression drugs are often prescribed but are not specifically dementia drugs.)

My husband Coy was on Aricept for almost 10 years. His neurologist was not sure it was continuing to work but since Coy was doing so very well he didn't want to change things. When we discontinued Aricept on hospice we discovered it was still working! and we added it back.

Aricept is approved for Alzheimer's, but it seems to work better for LBD, where there is less death of brain cells and more for the drug to work on.

Mw wife has been on Aricept, Exelon patch, Exelon tablets, and Namenda, one at a time in that order, and if there was any slowing of her progression, I could not detect it.

Oops! It's

Aricept is one of a few drugs for Alzheimer's.

Here's a bit of info. from there;
Aricept (donepezil) improves the function of nerve cells in the brain. It works by preventing the breakdown of a chemical called acetylcholine. People with dementia usually have lower levels of this chemical, which is important for the processes of memory, thinking, and reasoning.
Aricept is used to treat mild to moderate dementia caused by Alzheimer's disease.
Make sure Aricept is safe for you, tell your doctor if you have: a heart rhythm disorder; a history of stomach ulcers, an enlarged prostate or urination problems, liver or kidney disease, epilepsy or other seizure disorder, trouble swallowing, asthma, chronic obstructive pulmonary disease (COPD), or other breathing disorders.

Aricept side effects;
Get emergency medical help if you have signs of an allergic reaction to Aricept: hives; difficult breathing; swelling of your face, lips, tongue, or throat.
Stop using Aricept and call your doctor at once if you have:
severe or ongoing vomiting, a light-headed feeling, like you might pass out;
slow heartbeats, seizure (convulsions); painful or difficult urination; new or worsening breathing problems; or signs of stomach bleeding--severe heartburn or stomach pain, bloody or tarry stools, coughing up blood or vomit that looks like coffee grounds.

Common Aricept side effects may include:
nausea, vomiting, diarrhea, loss of appetite, muscle pain, sleep problems (insomnia, feeling tired, muscle cramps, weight loss.

You need to weigh the benefit of the medication against the risks (potential side effects). None of these has happened to my mother.

Windy,
My 93 yr. old mom has been taking Aricept since 2013. She started taking it when she was in Stage 3-4 (I'm assuming). She relocated closer to me in 2014 because the dementia progressed (while taking Aricept) to the point of needing observance and assistance.

Within a year and a half (October 2015), she needed to be placed in a memory care facility due to delusions, combativeness, confusion, aggression, hallucinations, etc.. I believe she is in Stage 5-6 now (Sept. 2016). Her aggression has calmed down, replaced with depression. She recently was evaluated by the gerontologist connected to her facility and he prescribed an antidepressant.

So, has the Aricept worked in slowing the progression of Alzheimer's dementia from stage 3-4 to stage 5-6 in 3 years? Would it have progressed even quicker if she didn't take it? It doesn't seem to me to have made much difference. The gerontologist suggests to continue it but I don't think it's doing any good. Fortunately, her copayment is only $15., so she's not paying a large amount for a mediation that seems useless.
As a nurse, I haven't had enough patients that I've been able to monitor, for significant positive results.

Really, how will we ever know IF these meds have slowed the progression of Alzheimer's, since we have no way to do a double-blind study? Every person is different and, with comorbidities (other health problems), the results can change from person to person. Also, different types of dementia (Lewy body, vascular, Parkinson's, etc.) may not respond to these medicines.
Do what you think is best after informing yourself of all the side effects (Meds.com is good). You could try it to see if your Dad improves or stabilizes.

The Exelon patch really helped my Mom. She started with the 4.6 mg patch for many months. As my concerns about her cognitive decline increased she was switched to the 9.5 mg daily patch. I cried a lot accepting that she needed something described "For Alzheimer's disease and personality changes with Parkinsons". Just the directions being geared toward the caregiver rather than the patient was hard to swallow 3 yrs ago. It has allowed her to focus on the things she enjoys doing (endless filing, clipping articles, etc) and no side effects. A few times I have withheld the patch for several days to see if it's even worth it anymore. YES it is. Prayers and a hug for you, your Mom, and your Dad.

This is a decision that is difficult to make.
My husband was on Aricept for many years and Namenda for a short time.
I did not see much of a difference with the Namenda and there were problems so he was taken off the Namenda.
Who is to say how the decline would have been without the drugs compared to with. As I have said before my Crystal Ball is out for repair, hope to get it back soon, so who knows what would have been nor what might be.
As to the cost...if you have a Sam's Club near you they do offer free Aricept to members that have the upgraded card (Sam's Plus) not much more a year and it may offset the cost of Aricept. (I upgraded as Vitamin D is a free Rx)
Now back to the drugs.
They SLOW (or are reported to slow) the decline.
They will not reverse nor cure any decline that has occurred already.
The question is at the stage he is in now would you want that progression slowed? Is he still functioning well?, fairly independent? If so then maybe slowing the decline would be good. If he is not functioning well and dependent upon someone for most of his needs (or ADL's) do you want to slow the progression at this point or allow it to happen more rapidly?
No matter what you decide the prognosis is the same.
Would your Dad want to be dependent upon someone? is you Mom able to care for him at home or will he have to be placed in Memory Care or a Nursing Home?

A side note here..
If your Dad is a Veteran there are services that he may qualify for that will make caring for him easier. Adult Day Care will give Mom a break. And there are programs that will assess his needs and provide a budget that will help pay for some services. Check into the VIP program (Veterans Independence Program) it allows veterans to remain in their homes rather than being placed either in a Nursing Home or other facility. And with this program family members can be paid to care for someone. (Not the spouse though)

My wife's memory loss first became noticeable thirteen months ago. Six months later, she was diagnosed and had all the classic symptoms of mid-stage dementia, i.e. depression, sleeping late, crying, hallucinations, sundowners, shadowing, withdrawing socially, and weakness. Imaginary people were in the attic, and she often thought that I was my exact double. (She was already taking Melatonin and Aricept.) Then, I took her to a neurologist, who added the anti-depressant, citalopram , and said that with time it might reverse some of the symptoms. I thought he was nuts, but in a few weeks the crying stopped. Now, just three months later, the memory loss is still there, but the above classic symptoms are 85% gone. She is stronger, laughing again, and re-engaging socially. Note: the doctor said, that the citalopram may improve her quality of life by treating the symptoms, but the memory loss will continue. It is like treating someone with pneumonia, who has a cough. Treating the cough does nothing for the pneumonia.

I think it's a good idea to consult with a doctor who is very familiar with dementia, these types of meds and who is current on the data. I know from personal experience, that discussing my Type I Diabetes care with my Endocrinologist, who works at a teaching hospital, is very different from discussions with a primary MD.

Thank you all for your comments. I saw the other thread about stopping these meds and some good comments there as well. As some may remember, I'm long distance caring for my folks. I call each day and yesterday mom sounded fine but then she called back that evening, crying about how Dad couldn't follow the baseball game on tv. This is nothing new it just got to her yesterday.

I think she would like to know that we have done all that is possible for Dad. I understand that and I'm sympathic but at this point I'm not sure it's worth subjecting Dad to a bunch of chemicals and side effects to make Mom feel better.

Windy,
In general, it is not allowed for me to speak about what I have seen, so I will speak in vague generalities, hoping a different perspective may help others.

It is my understanding that "there is as yet, no cure".
With that in mind, how many illnesses have no cure, but the treatments keep the patient functional longer, a semblance of a better quality of life before the final decline, able to recognize a loved one longer, or even, waiting for a cure.

You are not going to read about what you need to know from the FDA or the drug companies, but you sound like you have done your research.

If you do decide to make a trial of the medications, (this is just my opinion)
See a different doctor who believes in the difference the meds can make, and who has done research in this area of medicine.

Windy, that's a good question, I would be wondering, too, as my Dad is heading down the same road.

Sometimes I think that our elders are taking too much medicine. And each one has a side effect to which more meds are prescribed, then more side effects and more meds for those side effects :P I remember my Mom's Dad, a shot of whiskey cured just about everything :)