‘People living with dementia can continue to engage in creative and meaningful ways’

By Pia Kontos

Pia Kontos

Consider the following scenario: A man with Alzheimer's living in a long-term care home hits his table mates at meal times. Is this a symptom of dementia requiring medication or some other form of restraint? I urge a closer look.

Suppose you observe that the man removes his hat before entering the dining room, and then proceeds to hit only those wearing hats. Also take into account that he has lost the ability to speak. His "aggressive behaviour" can then be seen for what it is: disapproval of people who don't remove their hat before dining.

It’s a meaningful expression of his respect for table etiquette, and clearly a custom he values. Rather than restraining him, it’s more humane to reassign seating so he’s not at a table with other diners who are wearing hats.

We assume that with Alzheimer’s there is a loss of self, but that’s not so. People living with this disease continue to engage in creative and meaningful ways through verbal and non-verbal expressions.

I’ve spent much of my career showing that we don't lose our self with a diagnosis of dementia - and developed the term "embodied selfhood" to stress the importance of movements and gestures of the body for self-expression. My research challenges Western culture's assumption that cognition alone defines us as human.

Years ago, after spending eight months paying close attention to residents of a Toronto-area long-term care home, I was struck by the vibrant social relationships between the residents and the breadth of ways in which they expressed themselves. The social life I discovered there shows that even in later stages, people are able to relate to each other in meaningful ways.

The residents showed that they were "still there" in various and creative ways. Many were sticklers for social norms and customs - greeting fellow residents, saying please and thank you, and wiping spilled food from placemats.

Even after they lost the ability to speak coherently, they continued to have conversations that followed recognizable rhythms of speech – question-answer formats, taking turns, sometimes even teasing by mimicking each others' sounds.

Residents also paid very close attention to their appearance. I watched one woman reach under her bib at every meal to pull out her string of pearls and place them on top of her bib where they could be admired.

If that's not self-expression, I don't know what is.

It triggered for me a deep commitment to shift the focus in care from managing "challenging behaviour" to creating opportunities for people with dementia to express who they are. The arts - such as music, dance, and painting - offer creative ways for people with dementia to enjoy, experience and express themselves, enhance relationships and enrich their lives. We rely a great deal on our bodies, even when our cognitive abilities are intact, to interact with the world. Embodied selfhood takes on even greater significance when these abilities are impaired, since it becomes the primary way that people with dementia relate to the world. My research shows that there is life with dementia, and we must nurture and support opportunities for people with dementia to participate in life to the fullest extent possible.

Life doesn't end when Alzheimer's begins. Learn how to be there for those who are #StillHere ►