Seeking Help in Washington for Alzheimers &
Receiving Lifetime Achievement Award in MI

Dr. Bertha Bullen, retired Project Director for the POUCH Study, recently participated in the Alzheimer’s Association’s Advocacy Forum in Washington, D.C. There she joined 1,300 other volunteer advocates from across the U.S. who met with their Senators and Representatives to advocate for increases in NIH funding and improvements in palliative and hospice care.

Alzheimer’s disease is the only one of the top six fatal diseases for which there is no known prevention, treatment, or cure. Caring for Alzheimer’s patients will cost the U.S. $259 billion in 2017, and without a change in its trajectory, these costs will exceed $1.1 trillion by 2050. Unchecked, Alzheimer’s and other dementias threaten to bankrupt Medicare and place enormous strain on Medicaid programs. Finding a cure for Alzheimer’s is the ultimate goal, but even treatments that delay onset or slow the disease’s progress would improve this fiscal picture. At the Advocacy Forum, advocates urged Congress to support the NIH professional judgement budgets for FY17 and FY18, which would increase funding for Alzheimer’s research by $400 million and $414 million, respectively.

Aside from the financial crisis, caring for someone with Alzheimer’s disease places enormous physical and emotional burden on caregivers. In the U.S. today, there are approximately 18 million unpaid caregivers providing daily care for more than 5 million Alzheimer’s victims. The level of care required increases over the course of the disease, which can approach 20 years in some cases. Most victims of Alzheimer’s require 24/7 nursing care during the last few years of life, and many family caregivers sacrifice their health, often dying before the Alzheimer’s victim. Increasing awareness and availability of quality palliative and hospice care would ease help address caregivers’ needs for those facing Alzheimer’s as well as other chronic and fatal diseases. Toward this goal, Forum Advocates also asked Congress to pass the Palliative Care and Hospice Educations and Training Act (PCHETA: S. 693, H.R. 1676) to ensure an adequate, high-quality workforce through training, education, awareness, and enhanced research.

While fighting Alzheimer’s disease is not an area of professional interest for Dr. Bullen, it is a personal passion. Together, Dr. Bullen and her husband, Jim Kruse, have already lost eight close family members to Alzheimer’s disease, including both of their mothers. Naturally, this raises concerns for their own futures with respect to Alzheimer’s disease. But, their advocacy and other volunteer work with the Alzheimer’s Association is motivated by concern for those currently providing care for Alzheimer’s victims, and for future generations who will have to face this disease, its costs, and its heartbreak if Alzheimer’s remains untreatable.