重口味SM

Professor Pia Kontos (Photo by John Hryniuk)

For those with dementia, personhood persists

Pia Kontos is changing the rules of care

The scene: a long-term care home that serves elderly residents with dementia. It鈥檚 lunchtime. A resident is wheeled to the table in a wheelchair. She can鈥檛 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鈥檚 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 鈥渆mbodied selfhood.鈥 People who suffer from diseases like Alzheimer鈥檚, she argues, haven鈥檛 lost their essential selves. 鈥淚rrespective of their degree of cognitive impairment,鈥 she says, 鈥減eople continue to express themselves through the body.鈥 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 鈥 nurses, physiotherapists and other allied health care practitioners 鈥 to recognize expressions of embodied selfhood and to puzzle out their meanings.

鈥淧eople with cognitive impairment are often restrained because their agitation poses a difficulty for care staff,鈥 she says. 鈥淏ut we know that a lot of times agitation or resistance to care are not symptomatic of dementia. They鈥檙e meaningful self-expressions.鈥

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鈥檛. Reseating him with a hatless group solved the problem.

鈥淭hey initially thought his behaviour was symptomatic of his dementia, but it actually had meaning.鈥

Kontos鈥檚 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 鈥渃ulture of care鈥 focused on the treatment 鈥 often with drugs 鈥 of ailments and symptoms.

鈥淓mbodied selfhood takes its theoretical bearings from philosophy and sociology,鈥 she explains. 鈥淪o 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鈥檛 want to spend the whole session explaining what I meant.鈥 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 鈥渨hen practitioners recognize and respond positively to embodied self expression, not only is agitation reduced, but so is resistance to care. It鈥檚 a person-centred approach in that it encourages less reliance on tranquilizers to manage behavior.鈥

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

鈥淚t has been a privilege to do this research because I鈥檓 helping practitioners recognize  the personhood of the people they鈥檙e caring for. And once they see it, they can鈥檛 not see it. It鈥檚 really about honouring personhood. People may have cognitive impairment, but their humanity needs to be nurtured and respected. Personhood persists.鈥

 

 


 

 

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