JOAN’S BLOG - MON/TUES., NOVEMBER 1-2, 2010 – OUR CAMPAIGN FOR NOVEMBER, ALZHEIMER’S AWARENESS MONTH

We started to discuss this issue of raising awareness of Alzheimer’s Disease last week on the Message Boards under “Making Purple the New Pink”. Some of the information in today’s blog has been written previously in other blogs (Click Here for last year’s comprehensive blog) and message board posts, but I think it is important to pull everything together in one place – why we need to raise awareness; what we want the public to know about AD; how to get the word out; who can do it; and how to use the media.

Why we need to raise awareness – Taken from the 09 AD Awareness Month Blog:

"To get the caregiver the support services we need and the proper treatment and services for the person with the disease. There are over 3,000 discussion topics on the Alzheimer Spouse Message Boards, and many of them deal with the lack of understanding of the disease from family, friends, and ALL healthcare professionals, including doctors, nurses, psychiatrists, psychologists, EMT’s, and nursing home aides.

When healthcare professionals, particularly primary care doctors, are basically ignorant about the early symptoms, and brush them off as “normal aging” or in a younger patient, everything from depression to menopause, precious time is lost in getting proper treatment. I have attended countless conferences in which the overriding theme is that it is CRUICIAL to educate primary care doctors and other health professionals about Alzheimer’s Disease. The earlier the disease is diagnosed, the better chance the patient will have increased “quality years” of life with medication, meaningful activities and travel, an ability to be included in “advance directive” planning, and socialization. In my husband’s case, 2 years were lost because of misdiagnosis and incorrect medication. It was 2 years of stress, anxiety, confusion, and worsening symptoms that would not have occurred had we received the proper diagnosis.

When family members and friends do not understand the seriousness and complexity of the disease, the caregiver is left bearing the burden alone. It is mental, emotional, and physical torture, which often leads to the caregiver’s own health problems. We who are living with this disease understand that it is not just a “memory problem”. We know that it is a fatal, brain destruction disease, and we need help not only caring for our spouse with AD; we need help caring for ourselves. We need respite. We need help with the arduous physical tasks of bathing and changing. And we need funding for this help"

What we want the public to know:

          DISPELLING THE MYTHS OF ALZHEIMER’S DISEASE

Being aware of 4 simple facts about Alzheimer’s Disease can extend the quality of life for patients and caregivers. The Alzheimer Spouse website, www.thealzheimerspouse.com wants to raise awareness of the disease by dispelling the myths of Alzheimer’s Disease.  Physicians and the public need to know:

• Alzheimer’s Disease is NOT normal aging. If the doctor dismisses concerns, a neurologist who specializes in Memory Disorders can be found in any area of the country by logging onto www.thealzheimerspouse.com and clicking the “Finding a Memory Disorders Clinic in Your Area”.  

• Alzheimer’s Disease is NOT simple memory loss. It is a BRAIN DISEASE that destroys every part of the brain – behavior, personality, cognition, comprehension, physical abilities AND memory. It is 100% FATAL. There is NO CURE. There are NO SURVIVORS.

• Alzheimer’s Disease is NOT EXCLUSIVE TO THE ELDERLY. Early Onset Alzheimer’s Disease affects men and women UNDER the age of 65, and many in their 40’s and 50’s. It is misdiagnosed as everything from depression, stress, early menopause in women to Attention Deficit Disorder.  If you think your loved one has possible dementia, regardless of age, contact a Memory Disorders Specialist for comprehensive testing.  

• Aricept and Namenda can help with the symptoms and stabilize the person with Alzheimer’s Disease, for up to 2 years, but they CANNOT CURE IT. THEY CANNOT STOP IT.

How to get the word out – using the media:
We currently have two message board topics discussing our public relations ideas – “Making Purple the New Pink” and “Letter to Ellen Degeneres re Alzheimer’s Awareness”. My suggestion would be to use either the above fact sheet – Dispelling the Myths of Alzheimer’s Disease” or Elaine and Marsh’s letters and bombard the media. Address your letters to someone SPECIFIC at each media outlet. For example, Brian Williams at NBC; Meredith Vierra at the Today Show, etc. When writing to a newspaper, address the letter or e-mail to a particular reporter, such as health or lifestyle:

Nightly News – ABC, NBC, CBS
Today Show
Good Morning America
New York Times
Washington Post
Boston Glob
Palm Beach Post
San Francisco Chronicle
Chicago Tribune
 AARP
All of your congressmen/women and senators on the local and federal level
CNN
MSNBC
FOX
More Magazine
Newsweek Magazine
Oprah
Dr. Oz
Dr. Phil

If I were to choose only ONE fact to emphasize, it would be that Alzheimer’s Disease is not just an elderly disease. Let’s be honest. Citing facts that 1 out of every 2 people who reach age 85, is going to get Alzheimer’s Disease, is not much of an attention grabber. The consensus of opinion, right or wrong, ethical or not, is – Who cares about an 85 year old who is getting a disease? They’re going to die soon anyway. But make people aware of the 40, 50, and 60 year olds who have the disease – that is something that shakes people up and makes them take notice.

We need research dollars and money for patient and caregiver services. So let’s get going. Write those letters. Hand out my “Dispelling the Myths of Alzheimer’s Disease” flyers and see if we can get some attention that will hopefully turn into better services and research dollars.

You have my permission to quote information from this website and my blogs, BUT all of my writing, and any references to the Message Boards and this website MUST be credited to www.thealzheimerspouse.com under copyright laws. I would like the name of this website out there as much as possible in order to bring awareness to the unique issues faced by spouses of Alzheimer patients. In the 3 ½ years since its launch, the website has spurred nationwide interest and understanding of the emotional plight of Alzheimer spouses. I think it is extremely important to continue to raise that awareness in order to help all spouses who think they are alone in their thoughts and emotions.

Post your ideas for letters under the message board topic:Letter to Ellen Degeneres.

Post other ideas for raising awareness under the message board topic: Making Purple the New Pink.

Check out awareness raising products at Zazzle.

Thanks to all of you terrific people for your ideas and support!

Feedback to joan@thealzheimerspouse.com
©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved
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