My name is Charlene Wagner.
My husband is Allen Wagner.
Charlene: Hey Allen?
Allen: What?
Charlene: How are you feeling today?
Allen: Fair.
He has been diagnosed with Lewy body dementia.
And before that, used to be very happy, jokester, kind of loving caring man.
Why are you so sleepy today?
Hey, give me a kiss.
Allen's been taking anti-psychotic drugs since 2009.
In one nursing home, he was totally drugged until you couldn't even talk to him.
Charlene: Yeah, I can tell you're tired.
In an average week, in nursing homes across the United States, over 179,000 older people,
most with dementia, are given antipsychotic drugs often inappropriately
and without their informed consent.
Anti-psychotic drugs are FDA approved for the treatment of psychosis.
And they are used in nursing homes not to treat psychosis but to keep people with dementia
quiet and manageable.
In Human Rights Watch's research, we focused on facilities that had at least 20%
of their residents as high as 80% of their residents taking these drugs inappropriately.
Until the 1990s, it was very common for a nursing homes to use physical restraints,
to tie somebody to a chair or a bed with straps.
Physical restraints are banned but now many nursing facilities are using chemical restraints instead.
I would talk to the doctor but the doctor told me that
even though I said, I read about the state of Kansas
not wanting them on so many psych meds,
she said " This is what they do at this nursing home."
Antipsychotics have an FDA black box warning label that says if you're elderly with dementia
and you take this drug you have almost double the risk of death.
So not only do they not do what we want them to do but they cause harm
which is really antithetical to everything that we should all be about in health care.
He's at the point now, he sits in a chair all day long from the time they have breakfast
until they get them ready for bed.
It's actually been holy hell the last few years.
Living apart and not having him be the man he used to be.
Antipsychotic drugs are often given in nursing homes to people
who have not given informed consent.
And in some cases, the family members of those nursing home residents have no knowledge either.
If the family brings up the issue of not using antipsychotic drugs,
usually what we hear is that the facility says to them,
"Well, it's either the antipsychotic drugs
or you're going to have to find someplace else for this person to be
because we can't provide the care they need without the drugs."
If he was taken completely off of it, I'd be afraid they'd kick him out
of the nursing home and there's no place to go but home.
And I need 24-hour care at home and can't afford it.
Nursing home staff use these drugs to make their lives easier.
It is a convenience thing.
Because at the root of the problem is the resident's expression of unmet need
or distress or discomfort.
And the professional caregiver's duty is to identify the source of that problem
and address it.
One of the few things that a person has left when they are in a nursing home is the ability
to relate to people and communicate and interact
with their family and other people living there and staff.
And that is what these drugs for no good reason deprive people of.
Karla Benkula: How ya doing?
Lois Benkula: I'm doing fine.
Karla Benkula: Are you?
Karla Benkula: Hair looks pretty.
Lois Benkula: Thank you.
My mother's name is Lois Benkula.
She's 75 years old.
And when she was younger, she was just a free spirit.
She was the life of the party.
She went into a nursing home when she was 72 and she had dementia.
The first place instead of hiring staff, they just put them on medication to control them.
When we went to see her, she wouldn't talk.
She wouldn't laugh. She wouldn't cry. She wouldn't do anything.
She would just sit and stare, like she wasn't even there.
We have good federal regulations and a lot of states have good state laws
preventing bad usage of psychotropic drugs in nursing homes,
what we need is enforcement.
We need for those laws and regulations to mean something
and right now they mean very little.
The drugs should never be used inappropriately.
And in every case that they are, there should be accountability.
Lois was able to stop taking antipsychotic drugs because she'd moved facilities.
She's back.
She's healthy.
I used to stand on your feet when I was growing up. All over the kitchen...
She laughs, she smiles.
Boy, boy, I've got all these things going on.
She talks to me, she remembers things.
I got my mom back as much as I can have her back.
I'll see you later I'm stupid.
No, you're not stupid.
Silly.
Silly?
Yeah, I'm silly.
Wouldn't have you any other way.
No.
I've still got time to live.
Of course.
Yes you do.
Nobody who has dementia in a nursing home is safe
from the inappropriate use of antipsychotic drugs.
If you have dementia and somebody in a nursing facility doesn't understand
what your needs are, you could be given an antipsychotic drug.
And you would end your life not being yourself, not being understood.
And there is no reason that this should happen.
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