Anyone see any benefit from the dementia drugs?

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.

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 hope you get some responses to your question. I have never heard many positive things about these type of medications, though, there must be cases that they do make a difference. I just never hear of them. I have read quite a few things about the side effects, but that is to be expected with any medication.

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.

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.

I think it is hard trying to prove a negative, the drugs are meant to stabilize and slow progression not reverse or cure, so how can you ever really know if they are helping?
Drug companies invest in studies that compare groups that get drugs against those that do not, and compare the groups as a whole, not as individuals, to come up with their claims of benefit.

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.

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 :)

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)

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.