Research Profile - Recognizing the person beneath the dementia

What does it mean when a male resident with dementia in long-term care consistently hits people on the head in the dining room? It might mean he's aggressive and needs to be restrained. Or it could be that, despite his dementia, he remembers that hats shouldn't be worn at the table, and he's indicating his disapproval of people neglecting the etiquette of removing their hat before dining.

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Dr. Pia Kontos 
Dr. Pia Kontos

Dr. Pia Kontos, a Canadian Institutes of Health Research-supported researcher, thinks it's the latter. And she's working to help health-care professionals recognize the roots of these behaviours, so that caregivers can deal with them better.

These behaviours are part of what she calls embodied selfhood and, while the concept is rooted in existential philosophy, it has very concrete manifestations. Embodied selfhood refers to the use of non-verbal communication for self-expression. Dr. Kontos' observational research in a dementia unit as part of her doctoral research powerfully illustrates that regardless of a person's degree of cognitive impairment, the things they learned throughout their lives, the rituals they engaged in and the jobs they did stay with them and that they find ways to express these parts of themselves even after their ability to speak is lost.

She tells, for instance, of a female resident for whom appearance had always been important, who pulled her string of pearls from beneath her bib so they could be seen and admired; a male resident who could only speak in disjointed single words yet was able, in the context of a high holiday service in the facility's synagogue, to recite an entire prayer; and another male resident who had been a rice farmer who every morning at 3 a.m. was on his hands and knees in the hallway re-enacting his farming experiences.

Ordinarily, staff in dementia units might not see the pearls; might not appreciate the significance of ritual; or might attempt to keep the rice farmer in his bed with restraints. Dr. Kontos is trying to change traditional approach to dementia care.

"My whole program of research is premised on the belief that, if staff recognize and respond positively to residents' self-expression, it can reduce the need for chemical or physical restraints," she says. "There's a lot of dehumanizing care, and that can't be a function solely of the preoccupation with cost considerations. It's largely the function of a cultural assumption that personhood is extinguished with cognitive impairment. There is no affront to human dignity if you believe there is no personhood."

So her research focuses on finding ways to help staff in dementia units see the person behind the dementia. Her tool of choice? Drama.

"I wanted health practitioners to see the vivid expressions of selfhood I observed as part of my doctoral research" she says. "I wanted them to see the woman who pulled her pearls out. I wanted to dramatize for them these examples of embodied selfhood to facilitate understanding of this notion."

Dr. Kontos worked with a playwright to create vignettes that were incorporated into an educational program for dementia care practitioners. The vignettes served as a springboard for discussion with health-care professionals about the importance of non-verbal self-expression for person-centred dementia care.

"It was such a success," says Dr. Kontos. "The evaluation demonstrated that the drama made abstract principles accessible. It's addressing them emotionally as well as intellectually."

The results, Dr. Kontos says, have been impressive. She says that, once practitioners see the vignettes, they alter the way they practice, even the way they bathe their residents, because the vignettes change how they see these residents. Staff find there's less resistance to care, which saves them time and makes their jobs easier. They learn to see solutions where previously there were problems, as with a resident who resisted being fed. It wasn't that she didn't want to eat, says Dr. Kontos. She wanted to have the social experience of sharing a meal. So now, Dr. Kontos says, the staff members eat something with her.

"There's a lot of evidence out there that's not being taken up in practice. Drama is a very powerful medium to make that happen," she says.

"I love it. I see the results and, for me, there is no greater affirmation of what I'm doing."

The Study

Behavioural problems occur in up to 90% of people with dementia in long-term care, often resulting in the use of tranquilizers and physical restraints. Dr. Pia Kontos has developed a 12-week training program for health-care professionals working with people with dementia. The program uses drama to help these professionals improve person-centred care. Dr. Kontos collected input from residents, health practitioners and administrators to explore the impact of the program on staff and residents, and also to understand why the intervention strategies worked or failed. Findings of the evaluation study suggest that drama was effective as an educational tool, and helped implement the person-centred approach into practice. Significant practice outcomes included: new awareness that residents' body movements and dispositions convey meaning; seeking biographical information from families; increased time efficiency; and supporting residents' independence. Dr. Kontos is now working to refine and improve the program before testing it in a larger trial.

"When people lose the ability to express themselves verbally, their self-expression often becomes equated with erratic, demented behaviour."
- Dr. Pia Kontos, Toronto Rehabilitation Institute

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