JOAN’S BLOG – WED/THUR., SEPTEMBER 12/13, 2012 – IT’S NATIONAL ALZHEIMER’S AWARENESS MONTH – WHO CARES?

“You don’t die from Alzheimer’s Disease.” This was stated to one of our recently widowed members. Okay, you may say. This proves the general public still needs to be informed about Alzheimer’s Disease. But this statement was made by a DOCTOR. Granted, he was an ophthalmologist, but he should have known better. Shouldn’t he?

I have been at this awareness raising gig for 5 years, and I was beginning to think we were making inroads, until I read the ophthalmologist’s statement. So here we are in 2012, asking the same two questions I have been asking since the beginning. WHAT do the public and health professionals need to know about Alzheimer’s Disease and WHY do they need to know it?

I would prefer to write that the nature of Alzheimer’s Disease is understood by all, and that everyone agrees we need to find prevention or treatment, or a cure, and HELP for caregivers. None of this is yet true, so here are my stands taken from previous blogs on the issue of awareness raising for Alzheimer’s Disease:

First is the “WHAT” of Alzheimer’s Disease – what it is and is not. Once I again, I ask that you print and distribute the following fact sheet about Alzheimer’s Disease. Pass it out to everyone everywhere.  An ideal spot to leave them is in a doctor’s office.

• Alzheimer’s Disease does NOT always start with memory loss. PERSONALITY CHANGE and IRRATIONAL BEHAVIOR may be the first indication that something is wrong. When someone suddenly changes from rational, caring, loving, and reasonable, to impulsive, self centered, and irrational, it may be Alzheimer’s Disease. Consult a neurologist.

• 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. Young 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. 

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.

Now the answer to the question – “WHY” bother to raise awareness of this disease? To get the caregiver the support services we need and the proper treatment and services for the person with the disease. There are over 6,000 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 CRUCIAL 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.

No effective new treatment for Alzheimer’s Disease has come on the market since Aricept in 1996 and Namenda in 2003. That is almost 10 years! Alzheimer’s research needs to be fully funded. For more information on the government’s plan for combating Alzheimer’s Disease, CLICK HERE.

And so it goes for another year. CLICK HERE to find out what you can do to raise awareness of Alzheimer’s Disease.

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