Reading body language to enhance patient care

Alzheimer’s disease strips people of their memory and reasoning—but does it erase the whole person? Dr. Pia Kontos believes that even in cases of severe dementia, selfhood persists.

Dr. Kontos, a Toronto Rehab Scientist, argues that people with Alzheimer’s disease can express themselves in nonverbal ways through gestures and actions, even when language and other abilities are lost.

“People who are cognitively impaired are able to use their bodies for self-expression, providing clues as to who they are and what their needs are,” she explains.

Her claim challenges the assumption that memory impairment caused by cognitive deficiencies leads to a steady loss of selfhood, erasing the person we once knew.

Dr. Kontos developed her alternative vision as part of her doctoral work in Public Health Sciences. She observed countless examples of expressions of what she calls “embodied selfhood” in residents of an Alzheimer support unit.

She tells the story of a male resident with cognitive impairment who would hit other residents on the head upon entering the dining room.

"At first, staff were puzzled by his aggressive behaviour," says Dr. Kontos. "But then, a health aide noticed that he was hitting residents who neglected to remove their hats before eating. So his aggressive behaviour was, in fact, his recognition of a long-standing social convention."

Having figured out the meaning behind the resident’s actions, staff reassigned him to a table where no one wore hats—and the problem was immediately solved.

Helping health practitioners recognize and respond positively to such bodily self-expressions is a major thrust of Dr. Kontos’ research. The goal: to improve the quality of life and quality of care for long-term care residents with Alzheimer’s disease and to enhance the caregiving experience.

“Person-centred care needs to address the importance of the body as an essential means of self-expression and communication,” she explains.

Dr. Kontos and Dr. Gary Naglie, a Senior Scientist at Toronto Rehab, have explored the notion of embodied selfhood in focus groups with practitioners. They’ve found that some intuitively recognize and respond to expressions of embodied selfhood and that when they do, there’s less resistance by patients and improved interaction between patient and caregiver.

Encouraged by these findings, Dr. Kontos has collaborated with a group of researchers to develop a 12-week educational program that introduces dementia care practitioners to the notion of embodied selfhood. The program is being implemented and evaluated in two long-term care facilities to explore its effectiveness in enhancing quality of life and care for the residents, and reducing residents’ agitation, the need for medication and other forms of restraint, and staff stress/burnout.

Interestingly, the program uses the medium of drama to convey the concept of embodied selfhood to practitioners. Why? “Because it’s so vivid, so compelling,” says Dr. Kontos. With funding from the the Collaborative Research Program: Rehabilitation & Long-Term Care, Dr. Kontos collaborated with a professional playwright to translate key examples of embodied selfhood from her research into short vignettes. One such vignette features a female resident who always pulls a string of pearls from beneath her bib so that they can be seen by others—yet staff never respond to her proud display of pearls.

Because drama is a powerful tool for spreading new research findings, Dr. Kontos is also using this innovative method to enhance care for patients with traumatic brain injury. She collaborated with Toronto Rehab Senior Scientist Dr. Angela Colantonio and a professional playwright to develop a one-hour drama production called After the Crash. The play, based on research with brain injury survivors, health practitioners, and family care providers, follows a patient and his wife through the health care system as he struggles to recover from brain injury. It reinforces the need to provide survivors with compassion, respect, choice and control.

Performed for health professionals and survivors in several Canadian cities, the production has received an overwhelmingly positive response. With funding from the Canadian Institutes of Health Research, Dr. Kontos is leading a study to explore the impact of After the Crash on the knowledge and attitudes of health care practitioners regarding traumatic brain injury and client-centred care, and whether and how this impact leads to practice change.

“In communicating research findings more directly and effectively to health professionals, drama has enormous potential to change attitudes and practice as well,” she says.