Stigma: A Poem About Living with Dementia

An advocate living with dementia, Rose Ong looks to shatter dementia stigma.

This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to the author.

We had carried on a bright and cordial conversation
The kind of informal banter between new friends
Just learning about those little details of our lives that
Make us each quirky and interesting at the same time.

As we rose to return to our own sanctuary of solitude
I happen to mention that I had ‘dementia’ in order to explain
Why I no longer could drive and why I had used a walker
To get to her house, just two blocks from mine, here in Newmarket.

The shock that registered on her face was remarkably as if
I had slapped her; her jaw dropped, her eyes filled with extreme pity,
As she stammered, “…but you can talk so well,
I never would have known… I always thought that dementia…”

Photo courtesy of Getty Images.

I stood there and smiled as she stumbled over words of caution
And surprise, mixed together in the dreaded cocktail I call STIGMA.
Having learned to accept graciously, with patience and humility
I prepared what I would say in response to HER ‘overwhelming’ confusion.

STIGMA — I faced it often when I first became unconcerned about
The world’s perception of my condition — and began to speak openly
And honestly about how it affected my memory and anxiety levels;
The simplest tasks; counting money; following a recipe; meeting new people.

Why did I bring it up? Wouldn’t it be easier to not say anything at all?
Yes, but imagine, for a moment, having a dog who DAILY bit you in the leg and
Deeply wounded you physically and emotionally, but you merely covered
It up, never spoke of it, and denied its existence to anyone noticing your limp.

Why would a sane person do that day after day?  

Instead, I chose to uncover the depths of this crippling disease and all its
Emotional handicaps and physical disruptions and discuss it openly
With anyone who would listen. Surprised? You shouldn’t be, you should
Listen, really listen, from your heart because I’m going to change the world.

Photo courtesy of Getty Images.

Just imagine, if every person with any type of dementia began speaking up
About their limitations without fear, from the earliest onset of the disease,
Doctors would have to take notice; governments would have to find solutions,
And we could eradicate STIGMA in one generation.

Are YOU ready to change the world?


Join an online support group and discover other helpful dementia resources by the Dementia Alliance International (DAI), a peer-to-peer support and advocacy organization created by people living with dementia.


Rose Ong is a Canadian living with vascular dementia. As a dementia advocate, Ong founded the weekly Dementia Alliance International (DAI) Canadian Peer to Peer Social Support Group.  Email Rose for more information about the group