Michael Jordan and Dementia

A couple of weeks ago, I spent two days supporting the Canadian government by attending and speaking at their first National Dementia Conference, to help inform the development of their National Dementia Strategy. It was a personally very expensive exercise as reimbursement for costs to attend still pending, but in so many other ways, it was really wonderful to catch up with old friends, and meet for the first time, many old and new ‘online’ friends.

There was a lot of laughter, and also some tears.

The tears were a combination of sharing the reality of our ups and downs on the ‘roller coaster of dementia’, but also of joy in finally meeting people who have known each other online, some for many years, and never met in person. Lots of long hugs and tears at final goodbyes.

There are a great number of very passionate and active dementia advocates (people with, and without dementia) in Canada, and I applaud and salute them all. There was excitement, determination, passion and a lot of honest, open and frank discussions, and it felt like and sounded like all stakeholders are committed to ensuring human rights are appropriately embedded into their national plan and policies. I have no doubt people like Mary Beth Wighton and Phyllis Fehr and others will keep them honest!

One dear friend Ron, who I have met in person before this event, and also had the pleasure of also enjoying a guided walk with to visit the tulips (they really are very spectacular and worth a visit), as well as a history lesson about why they are there, asked a young and very fit looking chap to take a photo of us with the tulips as a backdrop.

It turned out this guy was an Olympian for Canada, and we chatted for a while about his athletic career and the motivational speaking he now does (the three of us are featured in this photo, provided to me by Ron).

He then asked what did we did, and Ron quickly introduced me as ‘The Michael Jordan of Dementia.’ It was a lovely compliment, although a tad embarrassing, and on top of that I’m rather short in height, and white!

Ron himself is quite the guru of IT in dementia, which is how I introduced him. The olympian whose name I’ve forgotten asked for my card, and said we’d keep in touch. Only time will tell on that one!

But back to the conference, which has been a little like the World Health Assembly in Geneva this week. There was a lot of very positive rhetoric, and the overwhelming theme or mantra to come out of it was #HumanRight4All. One of the things that worried me at the conference though, was a Workshop session I attended on creating Dementia Friendly Communities.

This is because none of the feedback from the table I sat at was included in the feedback to the whole group of delegates. To me, this implies they, like many other countries, they have already decided that DFC’s are the way forward, and will solve all of our problems. This is money being spent on projects that have made little difference to the  lives of most people facing dementia (diagnosed or caring for), instead of investments in health care and education of those who provide it.

If we don’t have accessible and affordable health care and services and support to live positively with dementia, no amount of Dementia Friends or Dementia Friendly Communities are going to make much of a difference, or at least that’s my fairly basic logic on this articular topic.

17 thoughts on “Michael Jordan and Dementia

  1. Yes Kate, I would agree with you and I use your terminology here to say that…”accessible and affordable health care”.. should be the foundation upon which any Dementia Friendly Communities are constructed.Too often philosophies and grand visions are adopted with foundations built on “feet of clay”. The case in point is the parlous state of our mental health care system particularly in various locations in Australia when the move to community based health care has meant that many people with acute mental illness issues go untreated and jails often become de facto psychiatric centres. Any move toward dementia friendly communities has to be done so on a decent health care foundation and also with a solid and meaningful and workable guarantee that the rights of residents are met to a very high standard.What I have said is probably a restatement of your views but if you wish to find a precedent of a botched health care system you only need to look at the troubles experienced by mental health systems when hospitals were shut down and penny “pinching bean counters” began to mismanage our acute mental health care services and believe me, I have been restrained thus far in my comments.

    Like

    • Thank you Colin,

      And I must quote you:

      “Any move toward dementia friendly communities has to be done so on a decent health care foundation and also with a solid and meaningful and workable guarantee that the rights of residents are met to a very high standard.”

      No amount of labeling by disease, or being ‘friendly’ makes one scrap of difference if we cannot get that!

      Thanks as always for joining the discussion. Kx

      Like

      • Thank you for your kind words Kate and yes have my permission to run with that quote and use it when ever you need. If it is good enough for you to use than by all means please do. The object of this exercise is to “beat the odds” for as long as we have it in our earthly power

        Like

  2. I have been reading much these past days at the evidenced frustration of our brood about forces having meetings that go nowhere as the end is already cast in stone. Caregiving is an established mode with much literature and we must devote all our energies to the logical, kick the can to the world’s governments to let the horse out of the stable and setup a working conference of all research experts put them on Government payroll and lets get some responses to help people rather than just lip service. ACTION

    Like

  3. What a wonderful experience, Kate-and wonderful that you met some awesome people-and good on all of these people for campaining about dementia-go folks!👍

    Like

  4. Good point! They can build all the DFCs they want, but if people can’t afford to live there or don’t have anyone to advocate for them, they’re still isolated and neglected as a result. I’m not aware of any DFCs in my geographical area, although I’ve heard of one small residence (10 beds) in Montreal that is supposed to be the first dementia-centred residence of its kind. We need more financial assistance and awareness around home care, which most experts agree is best for PLWD. Thank you for keeping us on our toes, Kate.

    Like

  5. Let’s hope these conferences help create positive change, and I have no doubt your expenses will be reimbursed…eventually. Governments are the same everywhere. Slow to move.

    Like

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.