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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings

Trying to Understand and Being Somewhat Afraid that I Already Do

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For days now I’ve been sitting thinking about and trying to understand why it seems so difficult to get organizations to work together particularly dementia Organizations. there are organizations that do some things very well, while others do other pieces well, but instead of working collaboratively, there are very few and very seldom where they work for the betterment of those living with Dementia.

The point, in fact, last year before the pandemic I was at our local Alzheimers meeting for people living with Dementia. As a person living with dementia, I can tell you that although they try, there is nothing about those meetings that make me want to attend, other than the fact that I like the people, but those meetings are dismal at best. On several occasions, I brought forward the idea to introduce or zoom meetings so people would have an alternative to the only once a month meetings and it would enhance the local meetings because people could meet others in various areas, and would have much to bring back to the local group. It would also fill the need for those who needed more than just a monthly meeting. This was not at all well received and there were no further discussions, I have since then brought it to various levels of which there was no interest.

So then I would wonder why? What would stop them from actively looking at how they could collaborate and together bring more to the quality of life for people with Dementia.

So then a couple days ago I am sitting at home, and they call to tell me that because the groups have been cancelled for almost a year, that they were going to try to put together zoom meetings if they could. I just about fell off my chair, here we are already having something in place, and it won’t be considered, so again I am asking myself why? So all those people had no supports all this time during the pandemic, when had they looked at what we did, they could have partnered with us and those people could have had support until in person would happen again. It breaks my heart, that people’s and Organizations’ egos get in the way, of truly helping support people living with dementia.

We don’t need to nor should we be reinventing wheels that are already in place no matter which organization, instead we should be working together to optimize and help each other. When this finally happens we will see true change for people living with dementia.

They could make it out to be too complicated, but it’s not, we find often things are over complicated unnecessarily. I go through many different scenarios and pictures in my mind, many different conversations with myself about all the why’s and why not’, I cannot come up with a could reason.

And then the light bulb moment, this has nothing to do with what would work and enhance the quality of life for people living with dementia, this is about money. It is about the fear that they may lose funds, by all those who donate to them, if they are engaging with other organizations. If we look at how much of the funds raised actually trickle down to help those actually living with Dementia, then it becomes clear.

There are some organizations that are trying to work and collaborate with each other with great success. But breaking through the old school way of doing things is a huge challenge and unfortunately, it is why we see so little change after years and years of advocating because sticking to the old school thought process and ways, is what brings in money.

It is why the stereotype and stigma still remains, it is why we have yet to change how the education facilities deliver their programs around dementia. It is why we still see human rights violations around dementia.

What we really need is a conference with people from all the various Organizations sitting at the table to look at how and what we can each contribute, and get to the business of actually bringing some tangible results for people living with Dementia.

They say money is the root of all evil, but truthfully it has the ability to do a lot of good if it is used as and for what it is meant to. One thing that Covid has shown us is that a lot of those fancy office buildings that eat up such a huge chunk of money that so generously gets donated, is really not needed, so maybe its time to rethink, how these Organizations are operating, and reallocating funds so they actually have to ability to do they good they were given to do.

We cannot nor should we sit back quietly accepting that it’s the way it is, it’s time to open up the box, colour outside the lines and find new ways so that we finally see the change that is years past due.

By Chrissy's Journey

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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