For agencies such as the Alzheimer’s Association Nebraska Chapter, advocacy is especially important, as Alzheimer's is one of the most underfunded chronic health conditions, said Sharon Stephens, Executive Director for the Alzheimer’s Association Nebraska Chapter. “While there has been significant growth in funding for Alzheimer's disease research, we are still behind.”
According to the Alzheimer’s Association, Alzheimer’s is the most costly disease in the United States. Every hour, Alzheimer’s costs taxpayers $21 million, and the cost of Alzheimer’s is set to quadruple to more than $1 trillion by 2050. One in three seniors dies with Alzheimer’s or another dementia, impacting those in Nebraska and all over the world.
Advocating for those affected by Alzheimer’s has been a priority for the Alzheimer’s Association from the very beginning, but Stephens said it has become more and more important from 2014 until today. “With advocates’ help, we have seen research dollars allocated to Alzheimer's nearly quadruple in five years. We have also been able to pass legislation at the federal level, including Kevin Avonte's law, and the state level, such as the Nebraska State Plan for Alzheimer's and Related Dementias.”
Anyone is welcome to be an advocate, and Stephens said that advocates play a critical role in underscoring the significant needs of families impacted by Alzheimer's to state and federal elected officials. Several times during the year, volunteers attend events at the State Capitol, such as the Day at the Hill event and proclamations for Alzheimer's and Brain Awareness Month and National Family Caregiver Month. During this time, they visit one-on-one with state elected officials and tell the story of how Alzheimer’s has affected their lives.
Advocacy volunteers also help with writing letters to the editor about upcoming legislation, providing personal perspective on why it is valuable to pass critical legislation, Stephens said. Volunteers can also sign up for Action Alerts, which enable them to contact their local elected officials through email. “They sign letters of support and urge Congress to move forward in advancing policy that betters the quality of life of families impacted by a diagnosis.”
Kearney-based Susan Bigg volunteers as an advocate for the Association. “I advocate for Alzheimer’s so that people will be emotionally free to walk away from the stigma that still exists with Alzheimer’s and get support and educational information about the disease.”
Bigg’s husband has lived with Alzheimer’s for 22 years. He was diagnosed early because of his incredible memory pre-Alzheimer’s life. “It was very evident something was wrong. He went through a long series of denial, severe frustration and anger.”
But Bigg said connecting with the Alzheimer’s Association has been a real blessing, as it has helped her and her family by providing additional educational information. “I want people to know they are not alone in this journey. There is support, information and help available to them.”
Bigg will attend the Washington, D.C., Alzheimer’s Forum this June as she has done for the past two years. She is the ambassador for the Alzheimer’s Association Nebraska Chapter assigned to Rep. Adrian Smith’s office and will advocate for legislation and impact funding for research and education. “I advocate for a cure for my daughter and granddaughter who are at risk as well as individuals and families so that they will not suffer emotionally and financially through this disease.”