15 experts tell the truth about antipsychotic use in nursing homes

A 165-page Human Rights Watch report published on February 5, 2018, confirms what many dementia care advocates and activists, and even the US government itself has known for years: there’s a drug abuse problem in the country’s long-term care industry, and elderly people who live with dementia are bearing the brunt of it.

According to the report itself, it is:

“…based on visits by Human Rights Watch researchers to 109 nursing facilities, mostly with above-average rates of antipsychotic medication use, between October 2016 and March 2017 in California, Florida, Illinois, Kansas, New York, and Texas; 323 interviews with people living in nursing facilities, their families, nursing facility staff, long-term care and disability experts, officials, advocacy organizations, long-term care ombudsmen, and others; analysis of publicly available data; and a review of regulatory standards, government reports, and academic studies.”

I wish I had been surprised by what I read in the report, which may be downloaded here, but I wasn’t. I saw it all in the Canadian ElderJail in which my mom spent the last four years of her life. Like the 179,000 people across the United States who are given inappropriately prescribed antipsychotics every week, Mom suffered the consequences of being sedated for no good reason, as do thousands of others like her in Canada.

Below are 15 truth-telling quotes I pulled from the HRW report and the video that goes with it. The quotes are from experts on the front lines of this issue:

1 ) “Too many times I’m given too many pills…. [Until they wear off], I can’t even talk. I have a thick tongue when they do that. I ask them not to [give me the antipsychotic drugs]. When I say that, they threaten to remove me from the [nursing] home. They get me so I can’t think. I don’t want anything to make me change the person I am.”
Walter L., an 81-year-old man given antipsychotic drugs in a Texas nursing facility

2 ) “If a 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.'”
Advocate for better care

3 ) “It used to be like a death prison here. We cut our antipsychotics in half in six months. Half our residents were on antipsychotics. Only 10 percent of our residents have a mental illness.”
Director of nursing

4 ) “They just wanted you to do things just the way they wanted.”
An 87-year-old woman who was given antipsychotic drugs against her will

5 )”My husband has been in antipsychotics since 2009. In one nursing home, he was totally drugged until you couldn’t even talk to him.”
Wife of man with Lewy body dementia

6 ) “[The underlying issue is] the nursing homes don’t want behaviors. They want docile.”
Social worker who worked at a nursing facility

7 ) “I see way too many people overmedicated…. [Facilities] see it as a cost-effective way to control behaviors.”
State surveyor

8) ) “[It] knocks you out. It’s a powerful, powerful drug. I sleep all the time. I have to ask people what the day is.”
A 62-year-old woman in a Texas nursing facility who was given Seroquel without her knowledge or consent

9 ) “Not only do [antipsychotic drugs] not do what we want them to do, but they cause harm, which is really antithetical to what we should all be about in healthcare.”
Dr. Jonathan Evans, former direction of the American Medical Association

10 ) “[My mother] would just sit there like this. No personality. Just a zombie. The fight is gone.”
Daughter of a 75-year-old Kansas woman in Kansas regarding what happened when the nursing facility her mother was in started giving her mother an antipsychotic drug

11 ) [One of the most common] ‘behaviors’ that leads to people being given an antipsychotic is if they constantly cry out for help.”
Facility social worker

12 ) “At the root of the problem is the resident’s expression of unmet need or distress or discomfort. And a professional caregiver’s duty is to indentify the source of that problem and address it.”
Nursing home reform advocate

13 ) “You actually see them decline when they’re on an antipsychotic. I think it’s sadder than watching someone with dementia decline.”
Director of nursing

14 )”In 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 would just sit and stare like she wasn’t even there.”
Daughter of a woman with dementia living in a nursing home

15 ) “We are supposed to be doing informed consent. It’s on the agenda. But really, antipsychotics are a go-to thing. ‘Give ‘em some Risperdal and Seroquel.’ We tell the family as we’re processing the order. The family is notified.”
Director of nursing

Shocking? Yes. But even more so is the fact that it goes on every day. Makes me wonder: what’s wrong with this picture?

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Take my short survey on behaviour here.

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