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JOAN’S BLOG – MON/TUE, MAY 11/12, 2009 – RAISING AD AWARENESS – WHO CARES?

This blog was prompted by two events -  the HBO documentary that began airing on Sunday, May 10th, and the Message Board topic started by one of our members – AD Intellectual Virgins, that discussed how uninformed people are as to the nature of Alzheimer’s Disease.

Many of us are trying in whatever way we can to educate the general public about Alzheimer’s Disease. We have members who do public speaking (Tony, Marilyn, Trish, Marsh – to name just a few); we have members who advocate for special programs (Ruth – Project Lifesaver); I write, attend conferences, and speak. Many of you talk to neighbors and friends. Many of you I either do not know about, or I have failed to mention (my apologies), reach out to your communities to try to raise awareness.

I have been doing a lot of thinking about this – with the exception of Marsh, whose speeches educate doctors about Alzheimer’s Disease and caregiver duties, and Ruth, who brings a needed service to the community with Project Lifesaver, does the general public really have any interest in what we have to say? Why should they? If it does not directly affect them, why would they be interested? I am not condemning anyone, just stating a fact. Would you watch a documentary or be interested in listening to someone speak on, for example, Lupus or Scleroderma? I would not. Would anyone who was not directly involved with those diseases? I think not.

Should we move our “awareness raising” toward “education” for the newly diagnosed?  All of us have repeatedly said that we were in states of shock at the full extent of Alzheimer’s Disease, the enormity of caregiving, and the devastating emotional toll it takes on us. We did not know where to turn, where to start, how to cope, what to expect. So maybe, those of us who want to raise awareness and educate the public should concentrate on doing so with those who need our experience and expertise. Maybe we should seek out other AD caregivers in support groups, day care centers, Alzheimer organizations and facilities, this website, and speak or write (on the message boards) to THEM. They need the information, support, and resources that we can provide, and they would welcome it. I do not think that those in the general public who have no connection with Alzheimer’s Disease are really interested in our information.

I come to this conclusion because although I am not unsympathetic to other’s difficulties, do I want to spend a luncheon date with someone whose main topic of conversation is the details of her husband’s medical issues? Honestly, no I do not. Would I go to a lecture or seek out a website on a disease with which no one in my family or circle of friends was affected?  Honestly, no I would not. So why would I think anyone not directly involved with Alzheimer’s Disease would come to a workshop or lecture that I or anyone else would be presenting?     

This website, all of my writing, and any talks I give to Alzheimer groups, is my way of providing awareness, education, information, and support about Alzheimer Disease to those who need it most – those who are in the trenches fighting this disease with their spouses.

My attitude could certainly be incorrect, and I expect those of you who disagree, to express your opinion on the message boards, but for now, I think I will not bore the pants off of anyone who is not interested in what I have to say about AD. I will stick to discussing it with those whom I can benefit.

MESSAGE BOARD TOPIC: Alzheimer's Awareness - Who Cares?

NOTE: I want to make it very clear, however, that I think that the situation with EOAD (Early Onset Alzheimer’s Disease) is in a different category. Doctors need to be educated and informed about this type of Alzheimer’s Disease, so they can diagnosis it, begin treatment, and provide support to the caregiver as early as possible. The general public must be informed about EOAD because NO ONE suspects Alzheimer’s Disease in someone in their 40’s or 50’s, which results in years of misdiagnosis, incorrect medications, confusion, and marital discord.

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  


The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

 

      

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