Awareness at any cost?

backwardsIn no way do I actually wish to promote this video released recently by the Alzheimer’s Society in Canada as part of their Dementia Friends Canada program, but, I do have to say something about it.

Firstly, it is thrilling they or anyone wishes to work with the Dementia Friends campaign, started in the UK, and made available to all countries by the Alzheimer’s Society UK CEO Jeremy Hughes at the ADI215 conference in Perth.

But really, whoever made and approved that video needs to think about the possible damage they are doing to the rights and advocacy of people with dementia vs the possible value of awareness at any cost.

The video, in my humble opinion, takes us back in our advocacy work 30+ years.

It increases the stigma, exacerbates the myths, and completely stereotypes us by ONLY highlighting our deficits, and not even suggesting we still have many abilities, at least until the very later stages of dementia.

In no way, shape, or form does it suggest that ADI’s Global Charter, I can live well with dementia, is possible.

 

30 thoughts on “Awareness at any cost?

  1. My dear Kate
    Just to say I too felt as you did when I saw this video
    I was surprised to say the least
    canada have a great CHANGING MELODIES group who produce great booklets on how to live well with Dementia with Warerloo university not sure of names oh MARLEPis another collaborator in this

    How should DAI respond
    A letter outlining why it’s message is a poor one and ways to correct this

    Maybe offering assistance re advisory in future ventures

    Hugs and rainbows AGNES

    >

    • Thanks for watching and commenting Agnes.
      I am in the process of drafting a DAI response, to send to the CEO and others of Canada Alzheimer’s Society, but in the mean time, since my email chats with Mary Beth Wight, who contacted them after I emailed her, they are also going to phone me sometime soon.
      We will still send a formal letter, as it is VERY important we address it.

  2. Gob smacked! Shocked that this was made for an organisation that is supposed to represent people living with dementia. Potentially could frighten a lot of people which I am sure is not the aim! As Wendy says “disappointing”

  3. I read the charter you mentioned today and for Australians we already enjoy the benefits outlined.That document is all about the desires that the person with dementia wants and that’s okay. This ad is to me is about starting with what people know about dementia and yes it maybe stereotyping however you start the process of engagement and then move their belief systems to the outcome you desire. The ad is about changing the engagement process with people you interact with for the better.

  4. It was moving, informative, and sad … BUT as you said, it is one sided and as with Dementia/Alzheimer’s it doesn’t describe the entire story. Do you think a “commercial” ever could? It is an oversimplification that probably will do more good than harm in raising money but more harm than good in really representing people who have Dementia/Alzheimer’s!

    • The problem is it was not made for raising money specifically, but rather for their Dementia Friends campaign – if the message it all about our deficits, then it scares people away rater than helps them see we just need BETTER SUPPORT to exist and function, especially when still living in the community…

      • Right. It does stereotype (some truth but not fully and not enough.) I think I want to try to create a video that takes your approach as a counter to theirs. Maybe I’ll write the script and then play the role of the person with Dementia. (Notice I have begun capitalizing the word DEMENTIA and refer to Gregory’s diagnosis as Dementia/Alzheimer’s.

      • I’m trying to write a comedy about dementia Michael… perhaps we should collaborate!? Also, I noticed you are also a published poet – should we swap books? Kx

      • Yes. I would love to swap books. How do we exchange addresses privately? Any ideas? I love your idea of a comedy. Often Gregory and I would laugh more than cry so should a theater audience not do so as well.

      • As you saw, we are now connected! Looking forward to reading your poetry, and also to sharing about the progress of writing my comedy! hugs to you both x

  5. Kate, exactly what I felt whilst watching it. In this day and age they should be more informed and not use fear tacticts… “It’s almost like look out for these people and report it”… horrible! xx

    • I didn’t think it was just me, and having published this there is lots of negative feedback on twitter as well… we are people, not deficits and symptoms, and no matter how much research funding is needed, or a campaign needs to happen, this type of shock tactic is offensive and no longer appropriate. xx

  6. How humiliating….To see dementia only as symptoms and labels, not as people with possibilities dealing with issues. Why not do a video that shines upon the person and all they have to offer rather than their problems? Very disrespectful if you ask me. I wouldn’t let this video slide by without backlash to show them where they went wrong. Seems to me the creators of that video need to be re-educated!! Hang in there Kate and keep pushing back! Blessings…VK

    • I am 51 years old, post graduate and diagnosed with vascular dementia two and a half years ago. I can identify with the presentation in the video and find the call for friends moving and comforting. Maybe we are not all living so well with dementia and don’t have to be ‘advocated’ for but choose to live every day in the moment

      • I’m glad you can identify with it, and alerting in the moment, which I am as well. My point is that it is not and should not only about our deficits, which is all the video has highlighted, but of course, some will like it as well. That’s ok too 🙂

  7. Wow! A bit of a shock. Im sure it has been done with the best of intentions – but way, way off the mark. Did they consult with any one from the Dementia Friends? If so, they have missed the message. If not… why not! Either way, it’s emotional, theatrical – and disappointing.

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