The Inevitability of Yellow Flowers Turning Purple: The Reality Surrounding Those Affected by Alzheimer’s

Photo: Alzheimer's Association of Central and Western Virginia, c-ville.com

NORA HENNESSEY, PUBLIC HEALTH PAC

Three thousand walkers, each holding a flower or two that spun in the fierce morning wind, came together recently on the National Mall to memorialize the widespread effects of Alzheimer’s disease. The flowers we held came in four colors: blue flowers were given to those who have Alzheimer’s themselves, yellow for those supporting or caring for someone affected by the disease, purple for those who lost a loved one to the disease, and orange for those who supported the cause and vision of the walk we were participating in—a world without Alzheimer’s.

Lydia and Mia, the two girls with whom I was walking, each held one of these yellow flowers. In this moment it occurred to me that their flowers would eventually match the purple flower I gripped tightly in my hand.

More than five million people are currently diagnosed with Alzheimer’s in the United States. This number is expected to increase greatly over the next ten years, with predictions putting Alzheimer’s patients in the U.S. at 13.8 million by 2050. Alzheimer’s is the sixth-leading cause of death in United States, currently costing the nation $230 billion. These expenses are expected to balloon to $1.1 trillion in 2050.  In the District of Columbia alone, around 9,000 patients were diagnosed with Alzheimer’s in 2014, costing caregivers a total of $26 million.

In December 2010, Congress unanimously passed the National Alzheimer's Project Act, which was officially made law a month later with President Obama’s signature . This legislation provided the United States with a much-needed framework for addressing Alzheimer’s and its effects on those with the disease and their caregivers.

The main goals of this legislation are to evaluate the effectiveness and outcomes of federal funding of Alzheimer’s research, care, and facilities, and to create yearly recommendations on how to better the lives of those affected by the disease—both physically and financially. A council created specifically to advise on the issues surrounding Alzheimer’s oversees the implementation of these recommendations, and while the framework has provided a large step forward for the Alzheimer’s community, there is still more to be done. To help bridge the gap between the national outlines and local implementations, many states—including the District of Columbia—have made their own plans using the federal recommendations.

Local policies need to be multifaceted and encourage increased research and medical treatments to address these issues. D.C.’s policy and plan for Alzheimer’s is, for the most part, well thought-out and comprehensive in this aspect.

While the policy tackles Alzheimer’s most pressing issues, the plan is reliant on an inefficient system that lacks incentives for those involved to begin this process. In order for this plan to be properly executed, each goal depends upon roughly ten identified “responsible parties”. These parties take the form of governmental institutions, non-profit organizations, and advisory councils, as well as caregivers and those affected by the disease themselves.  These constituents must therefore balance the responsibilities of each of these goals, fulfill their own duties, and hold the other parties responsible for their own roles in the achievement of these goals.

To encourage cooperation, D.C. residents will need to speak out and encourage these organizations to actively engage and work on the implementation of this plan. While we may hope that these stakeholders would do this without prompting, the combination of bureaucracy and the lack of consequences for non-participation makes unlikely that this plan will be fulfilled in its five-year time frame without active incentivization.

These incentives could include direct phone calls to the responsible organizations to encourage action, calls to the D.C. Office on Aging expressing the need for the consistent governmental oversight of the issue, volunteering in committees dedicated to addressing Alzheimer's, contacting local nursing homes and hospitals to convey the need for active research and investment in finding a cure, and encouraging local community and religious organizations to host coordinated group petitions for increased governmental action on the Alzheimer’s agenda.

Alzheimer’s does not yet have a cure. There are only five experimental drugs to fight the illness after it has been diagnosed, and only one experimental treatment has been created to slow or potentially avoid the disease before it takes hold. In Colombia, an extended family with hereditary early-onset Alzheimer’s – one of eleven of its kind in the world – has consented to try the latter drug, but as it is a relatively new undertaking, its effectiveness is still unclear. Across the board, organizations that work on Alzheimer’s express the need for more money and for more patients to become involved in experimental treatments.

Alzheimer’s policy that has been put in place is a step in the right direction if only we can agree to stick to it, to follow through on national recommendations and have our communities reach out to local states to initiate and pursue their own plans.

Amongst a sea of purple flowers, and more that will one day likely be replaced by purple flowers, the orange flower projected more than any other. The orange flower is the hope that one day a an Alzheimer’s diagnosis will not mean inevitable death by dementia. The orange flower is the hope that gives people the strength to fight against the fading of yellow flowers into purple.

We need more orange flowers.

In the words of fellow walker Lydia Igna, “This is when your faith in humanity is restored: when you are in this giant group of people who come out to walk together in this frigid weather to support one another against this disease that affects so many.”