I was on a zoom call with our state’s most passionate and educated dementia advocates. And I heard it.
Some nursing homes don’t let in people with dementia because they are behavioral problems.
I cringed, and I pointed out that we should change our language. And then the meeting continued. I wondered if my point had registered. Probably not, but I’ll keep making it. This is the hill I will die on. One of a few, actually.
As professionals in the field, we need to do better.
You see, I think that language matters. How we speak about something impacts how we think about it and act upon it. People with dementia are NOT behavioral issues. In fact, I won’t even say that they HAVE behavioral issues. Let’s strike the term entirely.
What they have are symptoms. Symptoms of a disease.
It would be cruel to get visibly annoyed with or to deny care to someone with lung disease because they coughed. What if we asked them to leave a healthcare facility because other individuals were frustrated with their cough? We would think someone was a jerk if they complained that an individual who had just had a leg amputated took longer to get from the parking lot to the building. We accept that it will take them longer and accommodate that.
Yet it is commonplace to see symptoms of dementia as behavioral issues, personality defects, or just people set out to make others’ lives difficult.
We say that people with dementia “act out.” I disagree. They aren’t acting at all. They are scared. And, if you consider their perspective, they have reason to be. Imagine if some people you’ve never met (even if they were in your room yesterday) showed up in your bedroom and asked you to take off your clothes. What if they wanted to watch you go to the restroom? Give you a shower? How would you react?
I sometimes hear people say that someone with dementia is giving them a hard time. When we say someone is giving us a hard time, we make it about us. It’s not about us. It’s about the person with dementia…and they may be having a hard time. They are not intentionally being difficult.
A couple of years ago I met the wife of a man living with Alzheimer’s at an educational event. She invited me to meet him after my presentation. His room was in an adjacent building. As we walked there on a beautiful day, she said she needed to ask me a question that she couldn’t ask anyone else.
She stopped walking and turned to me. With shame in her voice, she told me that her husband sometimes made sexually inappropriate remarks to the young women who cared for him. This was obviously something that had been weighing on her. She knew her husband would be horrified if he understood what was happening, and it was not something he would have done before he had dementia.
My heart sunk.
I was successful in explaining that this was a symptom. It wasn’t a character defect. I explained that changes her husband’s brain were responsible for this. We discussed how she could not take on responsibility for these comments. She couldn’t stop them. I used my go-to line….”You can’t fix dementia.”
She told me that, fortunately, her husband’s caregivers were typically able to ignore these comments and divert him. They frequently spoke about what a kind and gentle person he was and how much they enjoyed caring for him. (Please note—the facility that her husband resided in prioritizing education for employees.)
I know that nursing homes and other facilities may decline to admit some people with dementia because they are labelled as “being difficult” or having “behavioral problems.” Can nursing homes do this? Absolutely…they can and they do. Many people are ignorant of the fact that a nursing home can say “thanks but no thanks” to your loved one. And then what?
If a nursing home makes a certain amount of money for each resident, it’s appealing if they can fill those beds with individuals who require less time and effort. It makes sense in terms of staffing and economics. It’s a flaw of our system.
Not surprisingly, it is creating a challenge. There are people with dementia with nowhere to go. I wish this were something that happened occasionally, but it’s not.
As people live longer and more individuals are likely to have dementia, we have to find a way to do better. We have to find a way to serve individuals who are experiencing symptoms of dementia, even when these symptoms aren’t pleasant. We cannot turn our backs and (literally) put vulnerable people out on the street.
It’s a human rights issue.