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Monday, July 21, 2014

Alzheimer's Challenges are Mounting but Together We Can Move Mountains

We are happy to announce the kickoff of a movement we are calling OHIO Grassroots Alzheimer's Project or OHIO GAP. The first meeting will be held on 8/28/14 at 6:30 at The Worthington at 1201 Riva Ridge Blvd in Gahanna, Ohio.  The meeting is open to the public.  We will begin strategizing, forming committees, and discussing our purpose, mission and vision. Please consider joining us.  

Alzheimer's kills and the prognosis is epidemic.  According to the Alzheimer's Association 2014 Alzheimer's Fact and Figures Reports Centers for Disease Control and Prevention, every 67 seconds someone develops Alzheimer's in the United States. To add insult to injury, studies indicate that Alzheimer's deaths are vastly under-reported which results in a false sense of security and under-funding. Research shows that Alzheimer's was the underlying cause in 500,000 deaths  in the United States in 2010, a figure close to six times the estimate from the Centers for Disease Control.  In other words, in just one year, Alzheimer's killed nearly as many as AIDS - responsible for 636,000 deaths in the United States - had taken in more than three decades.  (Alzheimer's, a Neglected Epidemic. May 2014)  

So where is the outrage?  

I read an article in The New York Times called Alzheimer's, a Neglected Epidemic back in May that literally kept me up at night. I would lie awake while the wheels in my head went round and round wondering if we should move on what the article was suggesting. In short, the article asserted that the fight against Alzheimer's lacked momentum due to 1) distorted views about aging and 2) a lack of in your face leadership or a "strong inside game."  The sentiments of the article resonated as truth, mirrored my own observations and stirred an awakening inside of me that left me weighing options as I stood on the threshold of what to do next. A few weeks later I read another piece called The Unfortunate State of the Alzheimer's Movement  released by Glenner Memory Care Centers which further cemented my desire to do something.  

From the article: 

"But while public health campaigns to fight issues such as HIV/AIDS and infant mortality gained considerable popularity during their respective eras, Alzheimer's has not gained a similar response...The fight against issues like AIDS, infant mortality, and childhood cancer harvest immense attention because these conditions are considered extraordinarily tragic.  They deny children and young adults the opportunity to live a long, fruitful life.  On the other hand, Alzheimer's affects older adults - mostly over the age of 65. Alzheimer's is indeed a heartbreaking and disastrous illness, no one would  argue that, but a lack of attention combined with society's 'distorted' views of aging fosters a sentiment of indifference that permeates throughout all facets of our community - from legislation to the media to our own personal values."


Lack of momentum is further complicated and confused by a host of other challenges! The fact that stigmas about mental health disorders and ageism collide in Alzheimer's in a youth-obsessed culture making the Alzheimer's patient even more invisible in the public eye works against us. Caregiver stress, frustration and fatigue make it difficult to mobilize families who would otherwise be leading the fight on the front lines. Misconceptions and a lack of understanding continue to rule pubic opinion and policy.  For example, the media has advanced the idea that healthy living can help prevent Alzheimer's,  but the scientific evidence is unclear.   This type of misinformation can and does give way to victim-blaming.  Fear is also a factor. Studies indicate that Americans fear Alzheimer's more than heart disease, diabetes or stroke.  Patients and caregivers often struggle with fear-related issues in Alzheimer's.  A cousin to fear in the Alzheimer's experience is denial.  Everyone seems to be in denial.   Patient's often hide symptoms during the early stages and family members and close friends do not want to acknowledge Alzheimer's at any stage.  


Senior Agenda will continue to work to raise awareness, demand notice from our politicians, fight for funding for a cure, and encourage treatment options through volunteerism and donation. We will also continue to back those senior advocates, physicians, scientists, families, caregivers, and businesses that participate in the fight against Alzheimer's and dementia.  We will continue to stand with the Alzheimer's Association as we believe they are currently standing alone on the front lines.  Above all that, we will continue to celebrate seniors and the elderly as worthy of the attention and dedication needed to beat this diseases.  I have blogged many times about ageism and we will stay the course!