'Dementia Friendly': Finding More Than the Right Words

There is plenty of noise on the dementia front today; some promising, more teasingly hopeful, but premature or inaccurate, and still not enough funding to aggressively research a cure. Even so, a landmark announcement last month at the White House Conference on Aging on a national effort to pilot "dementia friendly communities," in six states, ought to be applauded if implemented with appropriate street smarts.

"Alzheimer's is one of the greatest challenges to American families in this century. It's imperative that America's hometowns support those living with the disease, their caregivers and families," said Senator Bill Frist, national spokesperson for Dementia Friendly America. The six communities include: Tempe, AZ; Santa Clara County, CA; Denver, CO; Prince George's County, MD; Knoxville, TN and the State of West Virginia.

Modeled after similar efforts in Japan and the UK, these pilot sites offer the first real step out of the shadows of stigma and isolation. They are also meant to fill a void for the millions of victims too late into dementia/Alzheimer's to benefit from the first round of disease modifying therapies, still by even the most optimistic estimates some five years away.

George Vradenburg, founder of USAgainstAlzheimer's, who worked to help launch the Dementia Friendly America effort and was a major catalyst behind its inception said, "This hometown Dementia Friendly America initiative sends a message to American families experiencing dementia: 'you are not alone, we are your neighbors, we care about you, and we want to help'."

Inclusion is always a good thing, but the good is in the articulation and execution. For those of us who live with Alzheimer's disease, the most common form of dementia, there is no room for political correctness, synthetic compassion or a feel good in the bubble of dementia where demons prowl like Abaddon, raging against those afflicted, their caregivers and family. Its cruel progression can take from 3 to 20 years, and is far too often an unwelcomed co-morbidity with Parkinson's, stroke, depression, addiction and PTSD. Cancer patients too often experience "chemo brain" that mimics dementia. The numbers are numbing and expected to rise to more than seven million in ten years, with one-in-seven living alone, a majority of them in their own communities.

Promoting true tolerance requires education and sensitivity training of law enforcement, lawyers, financial specialists, clergy, educators, even doctors and the general public in behavioral symptoms of dementia that have an idiosyncratic language all their own. Debrief families who have been left mortified in their effort to take a loved one with dementia on vacation only to be mishandled by airport security personnel. Recognize that dementia patients, 50% of whom are never diagnosed, are the ultimate victim for scams, fraud, elder abuse and neglect. Understand that with better diagnostics and early diagnosis, early onset patients are marginalized professionally or typically fired for unresolved performance issues. The bottom line is that stigma around dementia is trending younger.

Make no mistake that even in a "dementia-friendly" environment, caregivers will still be tethered to their loved ones who define their safe zones and first responders on call in a crisis. Such traumatic events are inevitable. We will all be tested in this "new normal" as to our strength of character.

Try visualizing what life looks like to an early onset victim with little short-term memory -- a progression of blanks. How dispiriting to lose a thought in a second, 64,800 seconds a day in an 18-hour period of consciousness; to stand exposed, and yet stand one's ground, to begin to grasp in fundamental, naked terms, who one really is--the good, the bad, and the ugly. There's the rage on days when you hurl the phone across the room because in the moment you forget how to dial, or when your golf club or baseball bat becomes an unintended assault weapon, or simply when one cries privately, the tears of a little boy or girl, because you fear that you're alone, nobody cares, and the innings are starting to fade. Those tears are shared by caregivers, fighting against all odds as dementia destroys a loved ones mind, their dignity, and leaves a painful void in the narrative that binds generations in a family.

As communities begin to wrestle with the definition and designation of "dementia friendly," it is up to those of us in its early stages to speak with candor while we can, and for caregivers and families, secondary victims who are the keeper of the secrets and shame, to define what will help the most in the face of a nation in collective denial.

When it comes to dementia, no one is immune. Please don't think it won't become your story. Like those who fought long and hard for the Americans with Disability Act that we now take for granted, we all have a stake in getting "Dementia Friendly America" right.

Meryl Comer, is President of Geoffrey Beene Foundation Alzheimer's Initiative, co-founder of Women Against Alzheimer's, and author of Slow Dancing With a Stranger: Lost and Found in The Age of Alzheimer's. Greg O'Brien is an investigative reporter, an early onset Alzheimer victim and advocate, and author of On Pluto: Inside the Mind of Alzheimer's.