The Nursing Home Behaviour Problem Scale (NHBPS) was designed by researchers in the early 1990s to measure the frequency of “bad” behaviours exhibited by people living with dementia in nursing homes; it lists twenty-nine problematic behaviours supposedly caused by dementia.
This scale and others like it are used to rate the frequency of such behaviour, and often to justify using antipsychotic drugs to sedate people living with dementia. I was shocked the first time I read the NHBPS. Why? Because most of the items on the list describe ways any normal person would act if she or he found her or himself in similar circumstances. We blame behaviours on the disease when instead we should be asking different questions.
I have created a series of vignettes around the behaviours on the NHBPS to demonstrate what I mean. The stories in the vignettes are told in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type. Like Judy Berry’s mother Evelyn Holly (a real person), my fictional Annie has also been sedated with antipsychotics and kicked out of several nursing homes for her “problematic behaviour.”
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My eyes are closed. I must be asleep. What’s that noise? I open my eyes. It’s dark. But light is shining beside me. Is it night or day?
I’m lying down. My head is on a pillow. There’s a blanket on top of me. I must be in a bed. But where? And what’s that noise? It sounds like snoring. Listen. Listen. It IS snoring. Listen. Is it me? Am I snoring? Listen. Check. Listen some more. No. It’s someone else. Someone else is in this place wherever this place is, and that someone else is snoring.
I close my eyes. Try to sleep. What’s that noise? Someone is snoring. I pull the covers off. Sit up. Swing my legs around. Feet on the floor. Stand up. The snoring is coming from across the room. There’s a bed there. I think someone’s in it. Oh dear. Why am I in a bedroom at night with someone else? Why aren’t I at home? Mummy will be worried about me.
I start walking toward the bed. My legs feel a little shaky. Something pulls me back, but I keep walking. My nightgown stretches tight across my chest. Something is holding me back. What is it? I lean forward. Suddenly the soft flannelette floats loose at the front again. I lurch a little from the unexpected release, but I don’t fall.
Whatever was holding me back isn’t anymore. A bell starts to ring somewhere. Ding. Ding. Ding. The snoring sound deepens as I get closer to the bed. I reach the bedside. Someone’s in the bed. An old lady.
“Excuse me,” I say. She doesn’t budge. “Excuse me!” Louder this time. Ding. Ding. Ding. A bell rings in the background. The bell is annoying. The snoring is annoying. The old lady in the bed doesn’t seem to notice any of it. Reach down. Put my hand on her shoulder. Shake her gently.
“Excuse me. Excuse me.”
“Mmmmmmmm, mmmmmmmm,” she mumbles. Her eyes stay closed.
“You’re snoring. Stop snoring. Wake up. Wake up.” Shake her a bit harder. She rocks back and forth. Doesn’t wake up. She’s dead to the world. Ding. Ding. Ding. There’s a bell ringing. What is that bell? This place is too noisy. It’s making me nervous.
“Annie! Someone says behind me. “Annie! What are you doing?” Who’s that!? Pull my hand back quick. Straighten up. Turn around. Slow motion. A young girl walks toward me. Or at least I think it’s a young girl. Who is she? Who is she? Her face is black because of the bright light shining behind her. Her voice is sharp: “What are you doing?”
“This lady is snoring. I want her to stop,” I say.
“Edna is trying to sleep, Annie,” the girl says. “You mustn’t disturb her, dear. You have to go back to bed. I’ll help you.”
The young girl with the black face doesn’t listen. “Come this way, dear,” she says. “It’s the middle of the night. It’s time to sleep now…”
- “Awakens during the night” is #4 on the NHBPS
- “Disturbs others during the night” is #20 on the NHBPS
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