Wednesday, December 9, 2015

Far from reality

This has been weighing on me the more I am bombarded by a particular dementia related drug commercial.  Mainly what bothers me is how far from reality it is.

See, the drug makers want to sell you the picture of your loved one with dementia (usually a parent) that still looks at you longingly, that lives with you and helps around the house or bonds with their grandkid and is aware of what is happening to them.  Then they show scenes of them baking cookies or rocking on the porch swing or whatever while they list the 20 side effects hoping you won't hear them as you think "hey, this stuff might be able to make my loved one feel that good again."  It doesn't matter that they say this won't stop the progression of the disease because that information going in doesn't match what is on the screen.

Maybe the reason Alzheimer's and dementia research is so underfunded and one of the fastest growing killers of our elderly is because of the picture that people with something to sell paint of it.  Twenty to thirty years ago, you'd joke about your grandparents being senile or blame a brain fart on Alzheimer's in jest.  I remember when my great grandma was toward the end, I don't think that she had full on dementia but she would tell the Mr and I that we were "such a great looking couple."  I mean she'd say it like 5-10 times during a visit.  Then she'd tell my cousin who is Paul Bunyan-esque in stature just how tall he'd gotten about the same amount of times.  We'd all smile, nod and look at each other like "ahhh, she's saying it again."  But we'd never joke about it in front of her, we'd laugh once they left.  It was "cute" because at that time (about 15 years ago) that was all we knew of dementia in the early stages.  We didn't recognize the signs of constantly repeating herself were a pre-cursor to something more sinister and I should consider myself lucky that she knew me at all in her 90's.

Perhaps we would all be better served and more educated about the realities of dementia if the drug companies show what families really go through.  Instead of showing the grandma with a smile on her face sitting happily in the kitchen with her daughter, obviously still fully aware of who she is, show the reality.  Show the grandmother who doesn't know she has three children and many grandchildren and looks at them with confusion and fear.  Show the grandpa that has to be taken to the bathroom to have his adult underwear changed because he doesn't know how to function in that capacity any more.  Show the favorite great aunt who makes babbling noises as she's being fed or has outbursts and scares children.

The problem is, if they showed that and you heard it "will not stop the progression of the disease" then you'd know the side effects likely outweigh the benefit.  I'm not saying these medicines can't help some patients especially if found early.  Unfortunately a lot of these are meds that "in addition to" other meds that they try first and aren't working as intended.  I made the mistake of putting my hopes in those drugs when my grandma was diagnosed and doctors were astounded at her decline.

I firmly believe if other instructions were followed like good diet, exercise and mental stimulation, we would've mentally had her around for much longer.  PLEASE make sure the caregiver knows how important those everyday things are and if the caregiver isn't able to fulfill them, then its time to have a talk as a family.  I feel they are crucial steps in her care that were overlooked, not given much weight and too much hope was pinned on drugs that, on their own, did nothing.  The drugs she's on now are more to stifle irritation and outbursts but zombie her up.  We're one step below the ones they give you for wanderers, which thank God, we haven't dealt with yet.

I also want to offer up a link to anyone who may know caregivers that need some financial assistance. Hilarity for Charity® and the Home Instead Senior Care® network are working together to award home care grants to those providing care to their loved ones living with Alzheimer’s disease or other dementias. The home care grants will be awarded across the United States and Canada. While there is currently no cure for Alzheimer’s, there is care. The goal of the home care grant is to provide exceptional home care to families affected by this disease, and to give these families support and rest.

As with any medications, please do your research and be your own advocate.  Find others who have stories to share with their experiences on the medicine.  Never underestimate how important things like diet and exercise are as a part of any treatment from Alzheimers to chemo.  Those things in conjunction with medications can have a much more positive outcome than drugs alone.

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  1. I know the exact commercial you are referring to and it makes me mad. I know they have to sell a product but the rose-colored glasses they are selling along with that are a disservice to anyone watching. The thing is, they could have easily portrayed things more realistically without getting too depressing but they chose instead to blow fairy dust up everyone's arses.

  2. I know they're trying to show the hoped for outcome of using their medicine, but it sure does show a very unreal picture. Pharmaceutical companies show the same unrealistic type of picture for many other diseases too - but I guess they couldn't sell anything if they showed the reality.

  3. Sage advice on this and so many other matters in our world today. We are told what moneymakers think will cause us to fork over dollars, whether it's truth or not. We recently watched my sister in law, 69, nosedive in under a year of dementia to the point that it took my mother in law seven years to achieve. She died November 22nd. Her neurologist is a good doctor and was honest with my brother and their grown children throughout her illness. For that we are so grateful. Truth is so vital. Anything less is pure cruelty, particularly in a situation that is already tragic beyond words.

  4. My friend's husband has the beginning stages of Alzheimer's (although technically they can't "officially" diagnose Alzheimer's until the person is gone and they do a biopsy of the brain because there is one specific thing they are looking for, although it's standard practice since the medical community lumps dementia, Lewy Body Dementia and Alzheimer's together -- learned that from a medical director I worked with) and he is on a popular drug that is supposed to basically keep him at his same functioning level and slow down the progression. The way the drug is touted is that it's this "wonder drug" and unfortunately it gets marketed that it will semi reverse the symptoms which is not at all true. And they don't talk about the side effects, which can be quite rough. One thing he is going through is everything "tastes strange" to him and she's having a really hard time finding foods he will eat now. I see him and hear about him on a regular basis and it's heartbreaking to see the decline. I told my friend it's like she's going through the grief process of losing her husband while he's sitting right next to her. It's one of the most brutal diseases out there. I know what I did for my mom as her caregiver for the six weeks I was with her and I know it was mortifying for her to have me have to change her and do things like that because she was so fiercely independent. Those commercials always show the 'gentle' moments instead of the harsh reality of temper tantrums, tears, and blank stares of no recognition whatsoever. While pills can help, they certainly don't cure.

  5. I think one of the most important things we can do it talk about the reality of it. The utter honesty of your blog posts on the subject are a really important part of the conversation that not nearly enough of us are having. Unfortunately dementia is one of those topics that we just don't know how to talk about. My mother helps her friends take care of their mother who has dementia, and honestly , I'm sure NONE of them had any idea what they were getting into when they took on the monstrous task of taking care of this sweet old lady. I'm sure that having a more realistic idea of what to expect would not have changed any of their choices with this lady's care, but I am sure it would have saved many hours of struggle and heartbreak. I am sorry you have to live with this terrible disease but thank you for talking about it.


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