In reading several posts I found that a good number of Alzheimer's or other dementia are not on any dementia meds.


I really would like to learn if there are a lot not on m dis and if so, how do they compare with those taking m dis for dementia.

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Helper, stop feeling guilty. Many spend time in denial, then rush to find meds to help. The research is overwhelming that the is not a drug to slow the progression of dementia. All that can be done is treat the symptoms. That treatment does not bring back math skills, socialization skills or anything else. All we can do is watch closely and wait for new symptoms then ask doc how to treat them.

I do not think docs are ignoring their patients. They practice medicine and they too are just as frustrated as we are that there isn't something available to control this disease! And how many time do the docs see it each day? That is why we are needed to be advocates for our loved ones. And the best advocates are part of the medical team and pursue treatments that may help with symptoms.

Dementia seems to be treated one symptom at a time. Early on, mom needed anxiety medications. Later on an antidepressant was added. There is no one size fits all medication.

For me the answer is fairly simple. Statistics supporting the effectiveness of the medications currently in use are not encouraging for Alzheimer's. There are several types of dementia that are lumped together as Alzheimer's. Perhaps the three commonly prescribed medications will help some of the population, so people can try them if they choose. Aricept is known to be helpful for Lewy body dementia. It is less clear how effective it is in the earlier stages of Alz, and not indicated for later stages. Namenda is not effective for early stages, but may help some people in the moderate to later stages of Alz. The effectiveness is generally small. A better question would be who has been helped by these medications and what differences were noticed. They don't slow the disease process, but may help some in cognitive symptoms. There are side effects and costs, though, so each person has to consider if they are willing to add another medication of questionable effectiveness. Of course, there is always hope that something will help. That hope is a good thing. It would be sad not to try something that might help just because it doesn't help a lot of people.

I have great hope for the trials being conducted in the UK.

I agree that denial is a problem and that doctors can be very unhelpful with this in early stages. One of my very big regrets is that I let preserving my dad's pride stop me from having him seen when he first started having thinking issues. And his doctor is one of those who have the attitude that memory loss is some kind of inevitability, which doesn't need to be addressed with any kind of urgency.

What threw me, in retrospect, was that the first thing to go wasn't his memory per se, but his ability to make good decisions, then about six months later, the ability to manage his finances. And then he began to have trouble telling reality from dreams, and feeling suicidal, and that quickly became unmanageable, so I had him seen by the neuropsych for diagnosis. Meanwhile, he could have been on Aricept and maybe slowed the progress of this monstrous disease.

The financial cost alone of 3+ years of his not making good decisions, and not letting anyone help, was staggering. Hindsight is 20/20 -- but unfortunately, it's not helpful now. I'm just putting this out there for anyone who is on the fence about getting your loved one diagnosed to "protect their pride" and not getting support from your loved one's doctor. Pride will eventually go anyway, so you might as well get an early diagnosis, and maybe slow it down long enough to get a DPOA and all the other paperwork done, and make care arrangements, while your loved one can at least understand what's happening to them and have some say about their care options.

I have noticed that very often everyone is in denial about the possibility of dementia in the early stages when these drugs are probably most helpful, yes even in the medical community. It is amazing how many here wail about their inability to get doctors to listen to their concerns about their parents/spouses, one has to assume with that attitude those people have not been offered any medication or counselling on ways to cope.

The current batch of dementia medications are not overwhelmingly effective. The generation of drugs now in research promise to be better.

So, if they are not very effective, why does anyone take dementia drugs now? Because they are each effective for a percentage of people with dementia. And wouldn't it be wonderful if your loved one was among those lucky people who does benefit from them?

So, many of us caregivers think it is worth giving them a try if the doctor thinks there is a chance they'll help.

Unfortunately I think many people stay on the drugs even when they don't help.

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