kTUmbYfF_400x400Gosh, where do I start?

I can think of several positive things to say about the Canada Dementia Friends initiative. First, they did it. Simply introducing the words “dementia friend” into our Canadian lexicon is a good thing for raising awareness. And there’s a nice, albeit brief, website. I like that to become a dementia friend you must sign up for an action. I love that there is a separate page for the Workplace, where organizations and companies can obtain posters and educational/promotional materials to educate employees on providing a more supportive workplace for people in the early stages of dementia (as an alternative to losing their jobs) and family care partners. And I love that our new prime minister, Justin Trudeau, is a Dementia Friend.

I just wish they’d made it a more meaningful and even difficult exercise to become one, and that they’d spent more time building a foundation, a real training program, a movement.

And I really, really, wish they didn’t diminish the meaning of becoming a Dementia Friend by giving away a trip for two to warmer climes (a sure incentive for us ice-bound Canadians!) for people who sign up to be a Dementia Friend before December 31. Sorry Mr. Prime Minister; if you’d just waited a few more weeks to sign up, you and Sophie could be on your way to Punta Cana!

The ALS folks got people to willingly have buckets of ice dumped over them, and this campaign for Dementia Friends makes me think we have to bribe people with sandy beaches and blue skies to sign up. What is that saying? “We know you don’t REALLY want to have to, you know, learn more about dementia or actually talk to someone with dementia, but just sign up so it looks like you do and we’ll throw in a free trip?”

I do not know what drove the Dementia Friends people to decide to take this action. Are they saying that their campaign as it stands isn’t working? That’s my best guess, but with over 14,000 “friends” signed up, that’s pretty good for Canada. Cultural shifts don’t happen over night. And in my opinion, that’s what Dementia Friends Canada failed to recognize when they started this campaign. Dementia Friends is a profound cultural shift, not a marketing exercise.

Perhaps our ex-Minister of Health was under pressure to do something — ANYTHING — as Canada is still the only G7 country not to have a national dementia strategy, and we know we’re falling well behind countries such as the UK and Australia in providing support to people with dementia and families. Even the USA has a plan to have a plan. So I’m imagining that Ms. Ambrose figured a Dementia Friends initiative, just like in England and Japan, was a quick sell, cost little, and could be implemented quickly so that Canada gave the appearance of doing SOMETHING.

So implement it they did, and quickly, without doing the major legwork needed to change anything in Canada around the stigma and our (multi) culture’s mindset around dementia. (I’d like to think that perhaps they thought they’d sign up a ton of people and then send out the training materials to them.)

You see, England’s Dementia Friends initiative, announced in November 2012 and launched in February 2013, was grounded in a national dementia strategy first published in 2009, with updates in the years after, particularly after David Cameron became prime minister in 2010, all of which entailed extensive countrywide consultations. The 2009 dementia strategy “…set out a vision for transforming dementia services with the aim of achieving better awareness of dementia, early diagnosis and high quality treatment at whatever stage of the illness and in whatever setting.” (see more at https://engage.dh.gov.uk/dementiachallenge/). I should note that Scotland and Wales have their own national strategies.

Dementia Friends, just one of many initiatives in the UK for dementia, is also grounded in something that I think created a huge cultural shift around their society’s attitude towards dementia, and that is the Dementia Action Alliance. This alliance is comprised of thousands of organizations that signed up to the National Dementia Declaration, which was created by people with dementia and their family care partners. More than a tokenistic gesture, signing the Declaration means that an organization has “published their own Action Plans setting out what they each will do to secure these outcomes and improve the quality of life of people with dementia.” These are serious action plans, with promised outcomes and the requirement to report on outcomes regularly.  On the Dementia Action Alliance website, they even explain that organizations can join Local Action Alliances, who are then responsible for implementing Dementia Friends in their communities and for creating dementia-friendly communities. I learned about the DAA early on in my research about dementia, and I think it may have been around since the 2009 Dementia Strategy, although it’s morphed a bit. For more information on this impressive national service project, see http://www.dementiaaction.org.uk/. I encourage you to take a look; the projects taken on voluntarily by their 3,576 members are truly impressive.

I won’t go on, but by now you are beginning to appreciate the groundwork that has been laid in the UK in preparation for Dementia Friends, and the cultural shift that has taken place as a result. My whole family is British; trust me, it’s a cultural shift. And you can appreciate how Dementia Friends met and exceeded its goal of 1,000,000, even though people must attend a training session and commit to an action (I see that you can now watch a video instead, but at least it includes an actual person with dementia and not an actor, like Canada’s advertisement about why you should fear Alzheimer’s even more than you thought you should.) In the UK, they are now aiming for 4 million, and they are world leaders in dementia-friendly communities.

Back in Canada, when you go to the Dementia Friends website at http://www.dementiafriends.ca, you will first be greeted by a pop-up with the free trip giveaway. To become a Dementia Friend, you must watch the aforementioned video, register, and commit to an action. I registered sometime ago (and also signed up to be an Ambassador, thinking I’d get to perhaps lead one of those nifty information sessions I thought for sure they’d have, just like in the UK), and other than thanking me for signing up and an email alerting me to this contest, I’ve yet to receive an email telling me what to do next. And no one tweeted my photo with a post-it note….

My best guess is that in Canada, we opted to “tick a box” in the “we don’t have a strategy but we’re doing something” column, to give the illusion that progress is being made on the dementia front. What they failed to realize is that by oversimplifying the process, by not asking more of people, by making it so obviously tokenistic–by having an actor in the video as if to admit that even Dementia Friends doesn’t know how to involve people with dementia in the darned initiative that is supposed to make the world more friendly towards them–they would fail to sign up as many people as they had hoped. The whole program needs a major overhaul, starting perhaps WITH a dementia strategy and some plans to mobilize the country on this effort, or at the very least, meaningful engagement of people with dementia in designing the program that should support them. An announcement by our dementia-friendly prime minister that HE is taking this seriously by holding an information session at parliament would go along way to showing leadership (I wonder if his new buddy David Cameron might give him a few tips?).

Instead, we opted to send someone to a beach for free. Let’s hope they take along someone with dementia.

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