Caregiving resources for every stage of the disease.
RSS Feed Print
Alz Foundation of America
llee08032
Posted: Friday, February 17, 2017 5:55 AM
Joined: 5/20/2014
Posts: 3763


Alzheimer's Foundation of America - Alzheimer's Disease and ...

https://www.alzfdn.org/
Apr 10, 2016 - The Alzheimer's Foundation of America (AFA) provides care and support to individuals with Alzheimer's disease and related dementias, and ...



I've never heard of the Alz Foundation before seeing a commercial about Glen Campbell in moderate stage this morning? Or did I? Have you? They surely aren't "out there" in the public eye like they should be. 

Michael Ellenbogen
Posted: Friday, February 17, 2017 6:28 AM
Joined: 11/30/2011
Posts: 1782


They are okay and have some monthly educational meetings. They get involved in many of the policies being created. They also are more about the caregiver then those living with dementia. They may be the second largest in the US that actually has a support desk to call into. 


The_Sun_Still_Rises
Posted: Friday, February 17, 2017 7:48 AM
Joined: 7/24/2015
Posts: 3030


 

Thanks for the link, I had never heard of them....will check them out. 

Foundations...tend mean a org formed for purpose of raise money...FYI.

In my experience, those Orgs with "Alzheimer's" in their name are primarily for caregivers...and have missed the mark on the Nothing About Us Without Us...I tend filter them all through whether they have PWD in decision making capacity their org (in determining how much respect they have for us). 

 

There a growing need being expressed these days in many areas the dementia community the need for an org that there for US...help us in getting dxd, in supporting us while waiting for dx, supporting us post dx...that help us learn how live with it.  In short, servicing the needs the people LIVING with dementia in all its various forms.  The HOPE is that one the existing orgs like DAI will pick up on that and provide it (rather than have reinvent the wheel)...as I and others are growing concerned of the 100s of orgs sprouting up that all seem entirely miss the mark.

All one can do is hope.  Again, thanks for the link.

<3


The_Sun_Still_Rises
Posted: Friday, February 17, 2017 7:57 AM
Joined: 7/24/2015
Posts: 3030


I have looked at site....it much more easy navigate than the Alz Asso....and they have a nice teen program.  I like them for caregivers and raise money that seems be going educate and for research.  Which is admittedly, refreshing see.  A very positive site over all.  Other than the store (which also easy navigate) no thing really for us. 

Again, thanks for the link and widening the view. 

<3


jfkoc
Posted: Friday, February 17, 2017 9:15 AM
Joined: 12/4/2011
Posts: 13018


Michael...what do you know about 

http://www.leadcoalition.org/


Michael Ellenbogen
Posted: Friday, February 17, 2017 10:47 AM
Joined: 11/30/2011
Posts: 1782


I also serve on LEAD. Lead is a great private organization bringing all the companies and organizations together to have common voice. They are doing some great things and it helps to get people all on the same page. AA is one of the few folks who does not belong to it which is a bit frustrating. In order to belong to them you must be a organization and not just a person. They also charge a fee for being part if the team. I believe there are about 90 companies now part of the group. Many of the AA’s that had separated are part of them. They were actually started by Usagainstalzheimers, AA and AFA. AA has pulled out which I really don’t like.  I get a lot of my information from them which is some of the best out there. 


jfkoc
Posted: Friday, February 17, 2017 12:47 PM
Joined: 12/4/2011
Posts: 13018


llee...I ran into LEAD when looking up the Foundation. I have known about the Foundation for a long time but thought a refresher check was in order. 

There is another org which looks like it might be very PWD oriented. Maybe it could be a  model for programs here.

www.alzscot.org/

Iris L.
Posted: Friday, February 17, 2017 8:24 PM
Joined: 12/15/2011
Posts: 14485


The Alzheimer Foundation provides this "stages of Alzheimer's Disease":


https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/


Iris L.

  


 
× Close Menu