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Agnes Houston on Emotional Aspects of Dementia Advocacy
The_Sun_Still_Rises
Posted: Saturday, January 28, 2017 9:53 AM
Joined: 7/24/2015
Posts: 3020


This is a video of a wonderful lady with dementia in Scotland, which is highly regarded as one of the countries in the world that is handling dementia the best, largely thanks the Dementia Working Group in Scotland, that Agnes a part of. 

https://www.youtube.com/watch?v=rS4B8o2fxro


julielarson
Posted: Saturday, January 28, 2017 10:22 AM
Joined: 9/30/2015
Posts: 1155


Good fopr them.. They are also dementia pioneers.. I am glad they are looking at the middle and someone is writing about it.. Yay!
The_Sun_Still_Rises
Posted: Saturday, January 28, 2017 10:45 AM
Joined: 7/24/2015
Posts: 3020


Agnes very wonderful, you'd love her and I hope you get a chance meet her....she and her team actually made a small page sized poster of the sensory issues we experience with dementia. 

It just crazy in my view that it have be PWD doing this for ourselves and others...and that more who do no have dementia do not get on board and step in and help us....but such is life, right?!  I am not sure it will ever make sense me...and I am no sure I want it make sense. 

I have been trying find my link her PDF...I posted it here a LONG time ago. 

You might be very interested the history dementia rights movement...it actually extremely inspiring.  Part it in Dancing With Dementia by Christine Bryden...she and a small group people with dementia were the first people dementia start speaking out.  But all the Alz Orgs were no listening them...after all, they just PWD...and no longer people.  So they formed an organization called DASNI and wrote these Alz Orgs....and....in 2006 (yes, just 10 years ago), won us our RIGHT be allowed "attend" the dementia conferences held by the Alz Orgs. 

As this group started dwindling (after all, we have dementia and progress)...Dementia Alliance International rose up....including in its founding members, Richard Taylor who continually advocated for our need for support groups.  Although we still do NOT have much...what we have is thanks him.  There is still work do.  DAI is only 3 years old. 

There are 1000s us active online....100s in these orgs.  This is also, exactly WHY I have advocated for those MCI be included DAI...because many MCI will progress...but, also, because they "get" on a more fundamental level what we going through....and because they will stay functional for longer...they could be a STRONG force carry the group forward...since our BIGGEST handicap is that we progress and are no longer able do all we had been doing. 

In any event...I think it good know what our colleges with dementia are doing so that we can see no only what the faces of dementia look like...but that there is most definitely LIFE after dx. 

<3


julielarson
Posted: Saturday, January 28, 2017 10:53 AM
Joined: 9/30/2015
Posts: 1155


Yes exactly, I am hoping that DIA does include us with MCI in their groups.
The_Sun_Still_Rises
Posted: Saturday, January 28, 2017 11:44 AM
Joined: 7/24/2015
Posts: 3020


I was never able convince them do.  But yes, that would be nice. 

<3