Mom and Dad mid 80s, Dad with mild moving to moderate dementia. It's breaking my Moms heart to be losing her hubby. She sees all the commercials for the drugs on tv with the happy dementia people and keeps asking me if I think we should try one or the other.
His doc thinks they are worthless and I've read nothing that justifies the cost and the side effects for the minimal benefits. Are we right or should I ask the doc to prescribe the stuff?
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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.
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.
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).
"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.
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.
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.
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 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.
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!
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.
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.
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.
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.
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)
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.
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.
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 :)