The Change, It Is A-Comin'

How to start an essay about my experience at the 24th annual Alzheimer Society of Nova Scotia provincial conference? With one word, perhaps: Amazing. There is so much to say, foremost that I am kicking myself for not going to a conference like this before. But likely until the last few years, conferences were geared towards health professionals, not towards unpaid/family caregivers.


I attended as a presenter offering a family caregiver perspective; most of the other participants were health care professionals, many working directly with people who have dementia. And yet on Monday morning alone, through three presentations, I learned so much about the brain and about the normal aging process of eyes and ears and muscles (that was then linked to designing spaces for people with dementia) that I was wound up with passion and hope by the time my turn rolled around at 3 pm.

Speaking with ASNS's Donna McLean before my presentation.

My point: Attend a conference. If you are a caregiver now, it will help. You will make valuable contacts. Since you don't know if you are going to end up taking care of someone with dementia, it will help. I am aghast at how little my mother and I knew, how few resources we were given. We were never even handed a "hotline" phone number to call if we had questions or needed to vent. All that exists now and people need to get their hands on them.
My overall sense of the conference, including the "Friends and Family Night" held Monday evening, at which I participated on the panel, is that people are hungry for information, desperate to do better. Wow -- let's pay attention to that. 
I realized that through my speech, I am not really targeting those who are caregivers now but rather the next generation of caregivers. The first thing I tweeted during the keynote address by Dr. Sultan Darvesh was, "Knowledge takes away the fear, gives control." This was my instinctive response to what I was learning. People need to be armed with information and hope long before a diagnosis is ever given.
Dr. Darvesh, a professor of Medicine (Neurology and Geriatric Medicine) at Dalhousie University in Halifax, NS, spoke about the brain and made it easy to understand how the brain works and how the symptoms of dementia emerge. His speech was captivating, not overwhelming.
He also dropped a bombshell during the Q&A: Dementia is not listed as the cause of death unless there is the neuropathology to back it up -- and the only way for that is with an autopsy. But we don't do autopsies automatically anymore, we aren't asked if we want part of the brain donated to research. We have to know about this beforehand, we have to indicate we want the autopsy done and why, and to check off the box for donation.
"Forget about what you see on television," Dr. Darvesh admonished. "Autopsies are done with dignity and professionally."

If you want to find a cure for dementia, you must have an autopsy, you must donate the brain.
Which is why the title of this conference was "Let's Talk About Dementia." The more you know, the less scary all of it is.

Reverend Faye Forbes spoke as someone living with dementia and caused a seismic shift in my thinking: She proves it IS possible to live well with dementia. And she provided me with insight into how my father was feeling before his diagnosis. 
I learned so much just Monday morning alone....and then Cathy Conway of the Alzheimer Society of Ontario gave her presentation on Tuesday morning. She speaks on person-centred care and listening to her, I felt that she was the perfect complement to what I say.
My two-fold message is this: "The person with dementia still exists" and "It's not about you, it's about the person with dementia. Cathy provides tools and ideas for engaging that person no matter what stage that person is in or state that person is in on any given day.
I made a lot of notes during her presentation and I don't think she'd mind if I shared some:

• Take responsibility for your interaction with a person with dementia. If it's only five minutes, make it count. 
• All behaviour has meaning. (Why is this behaviour happening? This requires detective work but also empathy. What could be causing this behaviour?)
• You need to BE the person with dementia, to imagine what it is like to be in their shoes, to be living with dementia. 
• LISTEN. 
• Slow down. It's about the person, not the task. (Love this. It's so true: Older people process everything less quickly and it's much worse in people with dementia. We need to slow down, take our time, speak and move gently. It's about the person, not the task.)
• Dementia requires extra skills and extra patience (compared to "regular" caregiving).
• Find small joys in your day.

The delightful Cathy Conway from the Alzheimer Society of Ontario.

I know Cathy is not the first to talk about this but her presentation was my first introduction to these ideas in dementia care. Sad, isn't it, that until this conference, the phrase and the concept of "person-centred care" was new to me? Dementia will never be easy but we can make it easier.
The resources are out there; they just aren't reaching people. 

So this is where I am at three days after the conference closed: Fired up, determined, whirling with ideas and energy. I feel as if I've embarked on a new journey with dementia, a different kind of dementia, one that will allow me to take my father's suffering and our unfortunately negative experience with dementia care and transform it into solutions and hope and change.
BIG CHANGE. As I said to one participant to stopped to thank me for my presentation, "My bazooka is loaded and I'm aiming straight at the stigma."
For that's where we are at with the future of dementia: It's time to get rid of the stigma. It's not facetious to say we can make dementia care "easier". We can. It doesn't have to be as hard as it is. There is so much great information out there, so many sensible, inexpensive, easy solutions AND many, many caring, compassionate individuals who are willing to help.
I spent two days with two hundred people with varying motivations for being there but with one in common: To become better caregivers. There is deep distress at how some people with dementia are treated in long-term care. The person still exists...
That's my motivation for starting my journey not on a moped but on a big, loud Harley!

Singer/songwriter Christina Martin graciously allowed me to share her song, "There Is A Light".

My thanks to the wonderful staff at the Alzheimer Society of Nova Scotia, particularly Linda, Michelle, Wenda, and Donna who made my first time such an inspiring occasion. 
And my thanks to my mother for allowing me to share our story.