whatsyourstoryWe don’t talk enough about Alzheimer’s disease and other forms of dementia. Yes, the topic got some airplay this month in Canada, what with it being Alzheimer’s Awareness Month and all. But let’s put it into perspective. About 750,000 Canadians have dementia. Five million in the US and 46.8 million worldwide.

Yawn. Right? I wonder what the Kardashians are up to today.

What if a meteorite were hurtling towards Earth, one that threatened the lives of 5 million Americans? We’d be talking about THAT for sure, wouldn’t we? And how! And what if that meteorite were to bypass Earth, but on its way released an indestructible orb that rendered 46.8 million people ill with a fatal disease that causes decreasing cognitive functioning. Would we be talking about that? More than likely.

Well, guess what? 46.8 million people WILL be wiped out because Alzheimer’s disease and most other forms of dementia are fatal–and we’re whispering.

What will it take? We speak of a “tsunami of dementia.” What if an actual tsunami were to strike the West Coast, putting millions of people in danger? We’d be talking, doing, panicking. And after it was all over and the Internet was working again, we’d all be sharing our stories and photos and videos.

With the “tsunami of dementia?” Not so much.

I know about this not talking thing. My mother had vascular dementia. It was eight years from the time we noticed her cognitive struggles until she died. In that entire eight years, my family spoke about it in total perhaps an hour, and I think I’m being generous. The amount of time I spent talking to my mother about dementia? Zero. Zero minutes in eight years. My mother and her husband talked about it a bit, but knowing how he had to lie to get her to go to the doctor, probably not much. And the amount of time my mother spent talking to the rest of the family? Also zero.

I’ve talked to other families and I know our experience is not unique.

And I know that not talking about dementia is what caused the majority of my family’s struggles: incorrect diagnosis, no outside support, no plan for care, scrambling for long-term care, no supplemental activities for my mom, and unbelievable stress for her husband, who at one point became ill as well.

At some point before my mother died, I realized that the stigma of dementia was the cause of our silence, and thus was at the root of all our action or inaction around my mother’s dementia.

Stigma is also at the root of the world’s misguided action or inaction around dementia. Because of the stigma, we get broken systems that don’t know how to care for people with dementia, that don’t think living with dementia is possible or important, and that aren’t willing to invest the money necessary to implement a seamless care system that supports people with dementia and their families from diagnosis to death.

So let’s get talking.

Tweet: Let’s get talking about dementia #MyDementiaStory http://ctt.ec/z3917+

It starts with people with dementia telling their stories to show that behind every dementia diagnosis there is a human being who may be dying but who–instead of waiting for a cure–would rather do the only thing within his or her control, which is to get on with the business of living.

Welcome to the My Dementia Story Facebook page at https://www.facebook.com/mydementiastory/

Modeled after the popular Facebook page Humans of New York, My Dementia Story puts a name, a face, and a story to the 46.8 million hit by the dementia meteorite.

On My Dementia Story, people with dementia can share their stories — stories that show the person behind the diagnosis of dementia — through photos, text and videos. To learn how you can add your story to My Dementia Story, or how you can support someone with dementia to share a story, click here.

Tweet: On #MyDementiaStory, people with dementia reveal the person behind the diagnosis through stories http://ctt.ec/I84ej+

I know that many positive stories will be shared, stories that remind you that people with dementia are members of our community–our neighbours–who experience moments of joy (and sorrow) just like you. But I think you’ll also hear stories that will highlight people with dementia adapting to their disabilities, families doing the best they can with little to no guidance, communities struggling to support their citizens with dementia, health care systems in crisis mode, and governments that will go broke dealing with our healthcare crisis. I think you’ll also hear stories of what works–little pockets of success stories due to advocates with dementia working hard to shed light on the plight of millions, and enlightened organizations that are innovating for no other reason than to improve the quality of life of their fellow citizens.

Tweet: Stories remind you that people with dementia are our friends, family, community–our neighbours.

It’s important that the stories of the people with dementia themselves are heard first, so that they are not overwhelmed by the stories of caregivers and service providers as can so often happen. But my long-term plan is to add those stories so that we can fully appreciate the complexity and the broad impact of our broken systems. People with dementia, caregivers, service providers, medical professionals, volunteers, academics — we are all part of the dementia story as truly there is no one who is not impacted.

To learn how you can add your story to My Dementia Story, or how you can support someone with dementia to share a story, click here.

***Special thanks to Bernadette Butler, Jessica Hickman, Sean Braacx and the team at Leftstuff.com for their belief in this project and for providing the website for people with dementia to record their stories on video. Leftstuff.com is a unique way of sending a message to someone you care about, or of recording your memories and family history for future generations. Check them out at http://leftstuff.com/