Why are memory drugs given?

[Anonymous]

Do memory-related drugs really help? By the time, Alz or dement are discovered, it's pretty late stage, it seems.

I've not seen any scientific studies that absolutely say these memory drugs help. If I missed anything, please let me know.

Do you think memory drugs are worth it?

[Anonymous]

I am not an expert but here’s my armchair analysis based on the limited reading I have done. Pharmaceutical companies know this is a huge area where they can make a ton of money so they have invested a lot of dollars in treatments. None have been stand out and many have been questioned. Because there are no treatments the FDA and because the drug companies need these drugs to go on the market to recoup their investment, FDA has been pressed and lobbied to approve things even with limited indications of efficacy. My understanding is the drugs available now may slow the progression but they will not improve your loved ones condition. Personally I am skeptical of these drugs. I think doctors believe they are unlikely to cause harm so why not try them.

[Anonymous]

My FIL takes one. I do notice a difference.

[Anonymous]

Anonymous wrote:I am not an expert but here’s my armchair analysis based on the limited reading I have done. Pharmaceutical companies know this is a huge area where they can make a ton of money so they have invested a lot of dollars in treatments. None have been stand out and many have been questioned. Because there are no treatments the FDA and because the drug companies need these drugs to go on the market to recoup their investment, FDA has been pressed and lobbied to approve things even with limited indications of efficacy. My understanding is the drugs available now may slow the progression but they will not improve your loved ones condition. Personally I am skeptical of these drugs. I think doctors believe they are unlikely to cause harm so why not try them.

I think it depends on your definition of unlikely to cause harm. One study "Combine use of Donepezil and Memantine increases the probability of five-year survival of Alzheimer's disease patients"

Who would want their life extended if they have Alzheimer’s? It’s cruel to caregivers and patients.

[Anonymous]

Anonymous wrote:I am not an expert but here’s my armchair analysis based on the limited reading I have done. Pharmaceutical companies know this is a huge area where they can make a ton of money so they have invested a lot of dollars in treatments. None have been stand out and many have been questioned. Because there are no treatments the FDA and because the drug companies need these drugs to go on the market to recoup their investment, FDA has been pressed and lobbied to approve things even with limited indications of efficacy. My understanding is the drugs available now may slow the progression but they will not improve your loved ones condition. Personally I am skeptical of these drugs. I think doctors believe they are unlikely to cause harm so why not try them.

Pharmaceutical companies are also run by humans, many of whom have lost loved ones to Alzheimer's or dementia. It's so horrible to watch. Every new drug candidate is hope of a major advance. It's devastating for researchers to spend decades of their life on a pathway or candidate only to have it be marginally effective. So much work. So much hope.

For many drugs, there are some people who respond really well to the drug and see a benefit. (Just like for allergy meds, cancer meds, migraine meds, and ADHD meds--not everyone has the same response.). So if there's benefit for a portion of patients, given the lack of better options, the meds are made available. You have to hope that your loved one responds well to the med and sees a benefit and isn't a non-responder. It's not a giant scam--everyone would love to know why certain drugs work for some and not others, but that science is still not there yet.

[Anonymous]

And sadly, those drug research days are coming to an end. Truly tragic.

[Anonymous]

My guiding principle for dementia care is that you want the person to feel safe and like themselves as much of the time as possible.

That’s a broad standard and feeling like yourself can change over time. For some people at some times it might mean that being able to stay in the family home longer is important and for another person at another time it might mean holding a baby doll.

It seems to me like memory medication can fit into that standard along the way depending on the person and where they are at, and that wouldn’t be about extending life. It would be about quality of life.

Plus as a person with genetic warning signs, I’m very interested in those early stages and the potential for therapies to help me hold on to the first phase, if I can do it peacefully, a little longer.

[Anonymous]

I always assumed it was for the worried very early stage person who themselves noticed changes and wanted to have as many decent days at home as they could.

[Anonymous]

My mom took them. I didn’t notice any difference, even when they were increased. However, they may have kept things more stable and slowed more decline, so she kept taking

[Anonymous]

I think a lot of people want to feel like they are doing something whether or not it actually helps.

[Anonymous]

It helped when my mom was mid stages. Now I think there’s no point.

More research needs to be done on prevention because seems like once you have damage to the brain there’s little that can really help much less reverse.

[Anonymous]

My MIL developed some hallmark symptoms of dementia over two years ago; notably,
got terribly lost while driving to a close by,
familiar location.

FIL was concerned to alarmed but recalled MIL saying (of her own mother who had a long slide in Alzheimer’s) that she’d rather “k herself” than to get an Alzheimer’s diagnosis. FIL ignored all increasingly concerning behavioral changes. Apparently there’s a brief window of time when these meds are effective and FIL recently told that to start now is futile.

Her diagnosis is now no longer discussed. Maybe together they made a decision to not treat? Everything’s a secret with them.

[Anonymous]

There was a NY Times article about a huge scandal in Alzheimer’s drug research.

Basically, years of data was falsified by leading researchers, so drugs released do little to nothing or never were even released.

Apparently, other promising initiatives were shut down because the falsified data was so compelling that those other things didn’t make any sense to research.

These people started out with good intentions but realized that all their funding would disappear if they had come clean.

[Anonymous]

Anonymous wrote:I think a lot of people want to feel like they are doing something whether or not it actually helps.

This is my thought.

I don’t think my mom will agree to them or be compliant even if she initially agrees.

[Anonymous]

Anonymous wrote:My MIL developed some hallmark symptoms of dementia over two years ago; notably,
got terribly lost while driving to a close by,
familiar location.

FIL was concerned to alarmed but recalled MIL saying (of her own mother who had a long slide in Alzheimer’s) that she’d rather “k herself” than to get an Alzheimer’s diagnosis. FIL ignored all increasingly concerning behavioral changes. Apparently there’s a brief window of time when these meds are effective and FIL recently told that to start now is futile.

Her diagnosis is now no longer discussed. Maybe together they made a decision to not treat? Everything’s a secret with them.

My dad somehow missed a major intersection twenty times and drove around in a wider circle until he needed gas and then I just walked over to the gas station. It was scary for me.