Dementia Awareness Month 2017

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Most years, I am more than frenetic throughout September, ensuring Dementia Alliance International (DAI) has blog content to post for every day of World Alzheimer’s Month also know as Dementia Awareness Month, and blog content to post here every day. For all sorts of reasons, including health, that has not been possible.

I have certainly been wondering, what’s all the fuss, effort and money put into WAM about anyway?

This year, a new approach seemed more appropriate anyway; less blogs, and much deeper thinking. But also, I have published less as there is almost no ‘air time’ during September each year, mostly due to every other very well-funded organisation having the ability and teams to ensure they fill the space. DAI and I do not have funds to put a social media campaign together, nor provide content and activities with a team of staff to support that. DAI has not staff, and my 300+ emails received every day, more often than not get forgotten until someone send a reminder!

Furthermore, I continue to question what all this attention via the online space does anyway? It may help raise awareness for organisations, and definitely raises funds, and sometimes even raises awareness of dementia. More often, it highlights the tragedy of dementia, rather than the very real fact most of us live a life with dementia, with often as many ups and downs as we had before dementia. It is little different to life before dementia, apart from the stigma and discrimination, the many misperceptions , and the reality that many people move out of our life, as if it is contagious.

Oh, and the lack of services. Let’s not forget that.

If all the money spent on conferences, events, video productions, awareness raising campaigns, DFC initiatives, WAM activities and even things like publications was spent on services, I suspect it might make a real difference to the people with the  lived experience of dementia and our families. Instead, the activities keep a lot of people employed, and organisations and companies afloat, and meanwhile, we generally still struggling to get more than a few hours of less than optimal support.

Food for thought.

16 thoughts on “Dementia Awareness Month 2017

  1. As you pointed out Kate, awareness is a wonderful thing….. but does mean much if you don’t have a continuum of services available to support those most affected. It really is about being able to strike a balance but unfortunately other agenda’s can get in the way. It is a good lesson in reminding us that whilst causes are valuable, people are real and they are the ones who experience the day to day challenges and frustrations. Again thankyou for your time and commitment.

    • Most of us livng with dementia continue to say… ‘what services?”. That is what is so disheartening when we see all the money being spent on marketing campaigns and too often, very high salaries.

  2. “More often, it highlights the tragedy of dementia, rather than the very real fact most of us live a life with dementia, with often as many ups and downs as we had before dementia. It is little different to life before dementia, apart from the stigma and discrimination, the many misperceptions , and the reality that many people move out of our life, as if it is contagious.” This says it all!!! So concise and true. Thank you once again for repeatedly pointing out that life continues with dementia!

  3. Succinct and too the point.
    Let’s measure outcomes that actually deliver a difference at grass roots
    Only those get ongoing funding. If we can’t make the pie bigger let’s wasteful ‘feel good’ ‘icing and cake’ fluff get a ‘bredsen’ trim and make it all efficient heathy and epidemic stopping. Couldn’t believe how much DAI budget was – miniscule – I wax treasurer of bigger budgets that were small community events.
    If funds available nationally surely commonsense would have it channeled into DAI – the cutting edge frugal making a significant difference for people WITH DEMENTIA – not about us without us. We know what works as we live best lives beyond dementia and cover each other’s back with understanding and kindness knowing from the inside out how bloody tough every day is without being patronised by well meaning well paid ego being massaged dementia beaucrat who Does Not Get It and never will unless get the disease themselves.

    • Thanks Val… it’s why I’ve slowing pulled back from so much advocating for any organisation other than DAI, as new consumers are saying the same things I was saying almost 10 years ago. Disappointing and disheartening to say the least.

  4. To all those people who have spent the entire year doing nothing, it’s time to get off your butts, and add some support to an area of great need. Its actually getting pathetic to watch, and I too am sick of bashing my head against a brick wall, when most people just whinge, & whine, but do NOTHING to create change or make a difference. Just as Kate Swaffer so eloquently put down in this article. There are many of us fighting and speaking up and creating awareness. It’s time for unity and global strength to take the front foot as ignoring the facts is not helping anyone.
    I have reposted Kate!!!

  5. Great to hear from you Kate – I hope the bruising is fading. That fall has not blunted your incisive thinking. Somebody has to say it and always you have the courage to raise the real issues. Hope we can meet soon!

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