For those with dementia, personhood persists

The scene: a long-term care home that serves elderly residents with dementia. It’s lunchtime. A resident is wheeled to the table in a wheelchair. She can’t speak, feed, or dress herself. Her caregivers fasten a bib around her neck.

Conventional wisdom suggests that this woman has lost touch with her world. Her disease has robbed her of her personhood.

Pia Kontos, Research Scientist at Toronto Rehab and Assistant Professor in U of T’s Dalla Lana School of Public Health, sees things differently. She notices that the resident carefully pulls a string of pearls out from beneath the bib, and lays it on top.

Seemingly small gestures like this are evidence of what Kontos calls “embodied selfhood.” People who suffer from diseases like Alzheimer’s, she argues, haven’t lost their essential selves. “Irrespective of their degree of cognitive impairment,” she says, “people continue to express themselves through the body.” These expressions are often related to social etiquette, awareness of appearance, music, dance, or art.

Kontos is marshalling her findings not to treat people with dementia, but to train the people who take care of them — nurses, physiotherapists and other allied health care practitioners — to recognize expressions of embodied selfhood and to puzzle out their meanings.

“People with cognitive impairment are often restrained because their agitation poses a difficulty for care staff,” she says. “But we know that a lot of times agitation or resistance to care are not symptomatic of dementia. They’re meaningful self-expressions.”

She tells the story of a male resident who would hit other residents in the head in the dining room. His behaviour often prompted his caregivers to isolate him. They eventually figured out that he always removed his hat before entering the dining room, and he was offended by those who didn’t. Reseating him with a hatless group solved the problem.

“They initially thought his behaviour was symptomatic of his dementia, but it actually had meaning.”

Kontos’s goal was ambitious: to change the assumptions that underlie dementia care.
She faced the problem of how to communicate her ideas to caregivers immersed in a “culture of care” focused on the treatment — often with drugs — of ailments and symptoms.

“Embodied selfhood takes its theoretical bearings from philosophy and sociology,” she explains. “So I had to find a way to translate this idea into a framework that would be meaningful to caregivers in a focus group setting. I didn’t want to spend the whole session explaining what I meant.” So she turned to drama, collaborating with a playwright to dramatize examples of embodied selfhood. The resulting vignettes were performed live and served as a catalyst for discussion and change.

Her focus groups were so successful that she went on to develop an arts-informed educational program based on her findings. In evaluating the program, she found that “when practitioners recognize and respond positively to embodied self expression, not only is agitation reduced, but so is resistance to care. It’s a person-centred approach in that it encourages less reliance on tranquilizers to manage behavior.”

Kontos is driven by what she calls “a moral commitment” to improve the quality of life for residents of long term care facilities.

“It has been a privilege to do this research because I’m helping practitioners recognize the personhood of the people they’re caring for. And once they see it, they can’t not see it. It’s really about honouring personhood. People may have cognitive impairment, but their humanity needs to be nurtured and respected. Personhood persists.”