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The Lived Experience Cafe chat

Discussing the Findings

 

It is human nature when we begin a new venture to hesitate, to wonder - will this be successful? What makes my effort any different from everything else so many others are doing?

This year, I had the privilege of taking part in 200 conversations with people affected by dementia (family, friends, relatives) and people in the early stages of dementia through face to face, phone and online conversations. My goal was to compile all that input, suggestions for change and lived experience and begin sharing it back with people who plan, design and implement services for seniors and begin to create change. 

In these conversations, I discovered six main priorities that really stand out to people affected by dementia.(This can be found in the presentation on this website on our new page entitled: Findings.)

Feedback from this presentation has begun to come in. It has helped me to be grateful that I did not hesitate. It has reminded me of the value and need of this Lived Experience Network.

One of our members gave me permission to share their comments about how the network impacted them:

 

"Although I was not able to activity participate in very many of the discussions, it was nice to have a place to voice concerns and share experiences, or even just read about others who had similar challenges.  The diagnosis of dementia seems to put up a barrier around you  - people are uncomfortable and often stay away.  It can be a lonely time.  It was nice to connect with others.

 The experience has been a relief, like opening the wound to let out the infection (that I really wasn't so aware was in there), so that it may finally heal.  

 I did attend a few face to face meetings, but somehow I found this Lived Experience Network to be better suited for those not feeling comfortable with breaking down in a group of strangers while talking about my experiences. Being able to talk to you, someone who knows personally in the same camp, was very helpful."

It is my hope that you will find this network helpful too. Be sure to visit our Findings page and give me your feedback. But also, check out the discussion boards - there are some new discussion threads - I'd love to hear and share your thoughts.

 

With thanks,

Sharon, Lived Experience Network Coordinator

 



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