By Daniel C. Potts, MD
Ad-vo-ca-cy—"the act or process of pleading the cause of another"
The best man I have ever known, Lester Eugene Potts, Jr., died one year ago last September from complications of Alzheimer's disease. His wife was at his bedside, as she had been throughout. I was at his bedside, too. I am his son, a neurologist, and a newly inspired advocate.
As is often the case for health care providers, close encounters with illness in those we love deepen our understanding of the plight of patients and caregivers, and serve to make us better at our vocation. Such experiences may also inspire us to speak and act for those afflicted, give greater voice and attention to their suffering, and use our influence to make a difference for them and others like them. Though we consider ourselves advocates as part of our profession, I daresay many of us are unaware of the opportunities available to increase the effectiveness of our advocacy.
Watching as Alzheimer's ravaged the lives of my father, my mother, and our family, I often felt completely helpless and ineffective as a physician. After all, I was supposed to be an "expert" to whom patients and caregivers turned for guidance. Instead, I found myself a less-than-capable advisor as we walked this road of denial, guilt, hopelessness, and loss. It soon became apparent to me that I had, to a degree, overlooked the needs of caregivers. Consequently I felt compelled to fundamentally change my practice style to focus more time and attention on caregiver health, even if this just meant listening to their stories.
Soon enough, I was given my own story to share. When my father could no longer be managed at home, he became a client at Caring Days Adult Daycare Center, a faith-based dementia daycare in Tuscaloosa, Alabama. The longest-running facility of its kind in our state, the center has become a model, incorporating a rich assortment of cognitively stimulating activities in a safe and affirming environment.
The professionals at the center espouse a model of caregiving whereby the talents and capabilities of each client are sought out and developed—and, in some cases, new ones are identified. In this way, clients' dignity and self-worth are preserved.
Prior to his enrollment, Dad had largely stopped smiling. I believe he sensed his affliction, and felt himself no longer able to employ his many gifts. A child of the Great Depression and a utilitarian soul, Dad was proud of his work ethic and his accomplishments. For the first time in his life, failing cognition had cost him a job, and he could no longer perform such tasks as mending the garden gate or putting lights on the Christmas tree.
The staff and programs of the adult daycare center proceeded to mend this broken man, giving back his joy and pride. His cognition, behavior, and affect all improved markedly, and my mother was given a respite as a result. As if this weren't enough, the art began to come.
My father, a rural Alabama lumberman, had never painted a picture prior to his enrollment at the center. While there, he learned watercolors with a retired artist, as part of a community outreach program from a local junior college. Lester Potts became an artist of national acclaim after the diagnosis of Alzheimer's disease. Dad's gift so inspired me that I became a poet, and our works are featured in The Broken Jar, a book donated in gratitude by our family to the center, and sold to benefit the institution and support its programs.
Stories have the power to touch us in ways that move us to action, especially those which reveal a message of hope in affliction or adversity. Many who view Dad's art speak of its spiritual impact. Despite aphasia, apraxia, and other acquired disabilities, he found expression through the visual arts.
I was left with the art, the story, and a mission: to honor my father's memory and my mother's sacrifice by advocating for others in like circumstances, to plead the cause of another. Without the means or influence to effectively invoke beneficial change, I was delighted when I learned of my acceptance to the American Academy of Neurology's Donald M. Palatucci Advocacy Leadership Forum. Through the education and mentoring I received there, I was able to develop an action plan to improve the care of dementia patients still living in my community and provide support for their caregivers.
Specifically, my plan entailed further developing the mission of adult daycare centers and establishing dementia daycare centers in west Alabama, a primarily rural area in which no dementia respite care had previously been available. I was both encouraged and prepared for effective advocacy at the Forum, with the pledge of support from the AAN itself. And, most importantly for me, I found a platform from which to present Dad's story.
The last year has brought many successes: the adoption of my plan by the Caring Days Board; collaboration with the Area Agency on Aging to use money from a grant establishing dementia daycare centers in several west Alabama counties; working with Governor Bob Riley's Blackbelt Action Commission to improve health care in Alabama's poorest region; presentations across the Southeast to groups involved in respite and the care of the elderly; a poster presentation at the Alzheimer's Association's Dementia Care Conference; several art shows, a candle lighting, and a walk to benefit dementia care in our community; articles in nationally syndicated publications; and conversations with the AAN and Alzheimer's Foundation of America regarding the development of legislation supporting dementia daycare at the national level.
Even with the inevitable barriers that have come up, I am confident that the mission will continue for countless dementia patients and their caregivers, so that they may be given similar opportunities afforded to my father and mother.
November was National Alzheimer's Disease Month. November 1st was All Saints' Day. November 4th would have been Dad's 80th birthday. During this time, I reflect, give thanks, and continue pleading the cause.
"Alzheimer’s Care Visionary Named AAN Palatucci Advocacy Leadership Forum Advocate of the Year" (AANnews®, December 2008)
Within the past 24 months, Dr. Potts was personally compensated for serving as a speaker for Eisai and Pfizer Companies. In the same period, he gave depositions regarding some of his patients. Additionally, he served as a principal investigator for Schwartz Pharma in a Phase III pharmaceutical trial.