“This time next year she won’t remember me,” I thought in the autumn of 2011 when I abandoned my life as an expatriate businesswoman in Dubai to come back to rural Canada to care for my Mom who lived with dementia of the Alzheimer’s type.
After a year she would be placed in a facility where they would take better of her than I could (at least that’s what I imagined), and I’d leave to restart my life somewhere else. That plan was based on what I knew about dementia and dementia care at the time, which was next to nil.
Like most people, I saw Alzheimer disease and other dementias as a terrible tragedy in which those who live with dementia are on a journey that is nothing more than a long slow, tortuous train through hell – a journey in which they are robbed of their very selves as they disappear into a black hole of oblivion. I was mistaken in those beliefs. Today, based on my experience with people who live with dementia, I see the disease and those who have it in a completely different light.
But I was right about one thing. On November 16, 2012, a little over a year after I came back to Canada from Dubai, Mom was placed in a long-term care facility. Once I saw the reality of institutional care, I again abandoned my own life plan to stay close by her side and be her advocate.
To say that my advocacy was not well received would be an understatement of gargantuan proportions. It took another year before I understood some of the fundamental reasons why the powers that be and I were at such serious odds. The roots of the conflict around my mother’s care lay in perspective, power and control. On the issue of perspective, this chart, from Dr. G. Allen Power’s book “Dementia Beyond Drugs: Changing the Culture of Care,” captures the essence of where experience took me:
When I first read down the right-hand column I found myself nodding in agreement on every point.
My dementia glass is half full. I am 100% sure, based on my own experience, that people with dementia still have great potential for life and growth, they can still learn, and their responsive behaviours are attempts to cope, problem solve and communicate their needs. This is no theory. I know it to be true because I’ve experienced it first hand.
As a result, I am completely convinced that individualized, person-centered living that engages people who live with dementia is critical to their well being. Positive approach to dementia care advocates worldwide share my view; research supports our position.
On the other hand, I suspect that many institutions and people in the medical profession still subscribe to biomedical model that leads to the high use of medications (particularly antipsychotics such Risperdal and Seroquel), and produces needless suffering and decreased well being.
The biomedical model is outdated and out of step with the reality and the needs of people living with dementia as well as their care partners.
It’s time for a change. People living with dementia deserve better. So do the people who walk with them.