On June 19, 2018, the Senate Aging Committee held a hearing to examine the progress of Alzheimer’s diagnosis, prevention, research, and data collection. The hearing, “Changing the Trajectory of Alzheimer’s: Reducing Risk, Detecting Early Symptoms, and Improving Data,” largely focused on the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act.
Chairman Susan Collins and Ranking Member Bob Casey both emphasized their bipartisan support of the BOLD Infrastructure for Alzheimer’s Act, which would focus on creating a public health infrastructure. The BOLD Act sets the tone for the public health crisis of Alzheimer’s and would address education, early diagnosis and detection for health and assistance for those with the disease.
Witness Testimony
Members of the committee heard from a variety of stakeholders, including family caregivers, federal officials, state officials, and academics.
Marcia Gay Harden, Actress and Family Caregiver, outlined the impact of Alzheimer’s disease on her family and offered input in funding a nationwide initiative for an Alzheimer’s public health infrastructure across the nation. She endorsed the BOLD Alzheimer’s Act, emphasizing that raising awareness about Alzheimer’s will likely promote brain health and reduce cognitive decline. Ms. Harden further expressed her support of investing public health through legislation, by increasing early detection and diagnosis, reducing risk, and preventing hospitalizations.
Lisa C. McGuire, Ph.D., leader of the Alzheimer’s Disease and Healthy Aging Program at the Centers for Disease Control and Prevention (CDC), shared the CDC’s approach to Alzheimer’s prevention. She outlined the Healthy Brain Initiative, a public roadmap for state and national partnerships. The CDC-led initiative works to improve quality of care, cognitive health, education, risk reduction research, and relieving the burden on caregivers. She argued that the BOLD Act must should help states continue the national awareness efforts to further improve education and diagnosis of Alzheimer’s. Dr. McGuire explained that the CDC, with the support of Congress and public health officials, should examine state-level data about Alzheimer’s research to further the roadmap of improving public health in communities and nationwide.
Secretary Teresa Osborne of the Pennsylvania Department of Aging offered testimony and promoted the need for education about Alzheimer’s, expansive research, and providing services to caregivers in the need for new public health approach in addressing Alzheimer’s. She elaborated on the work the State of Pennsylvania has taken to address the disease through the Older Americans Act Reauthorization Act of 2016 and emphasized the effect that the BOLD Act will have on Alzheimer’s.
Dr. Gareth Howell, PhD, Associate Professor at Jackson Laboratory, testified about the work of the Jackson Laboratory on identifying the earliest stages of Alzheimer’s disease and dementia. He outlined the effort of MODEL-AD, a research collaboration that uses mice as models to examine possible prevention techniques, methods, and therapies. Mice are given symptoms that mimic Alzheimer’s disease and observed on their reaction to treatments. Such reactions—those being ones of increased cognitive function and memory–provides information that the possible treatments used on the mice could address Alzheimer’s disease in humans. Dr. Howell stated that the data suggests that no matter the diet of the mice, mice that were more active have better cognitive function, suggesting that this could have a similar effect on humans. He stated that the research methods are working to determine genetic factors to determine amyloid-induced dementia; he anticipates finding new genes and pathways that could potentially target and treat Alzheimer’s disease.
Cheryll Woods-Flowers, a family caregiver, emphasized the importance of passing the BOLD Infrastructure for Alzheimer’s Act. Through her experience as a caregiver to her father, she stated the importance of a greater nationwide public health effort and infrastructure to provide education, increase early detection and diagnosis, and remove stress on caregivers. She emphasized making research a priority. Supporting the Bold ACT to accomplish the goals of creating the nationwide health act.
The biggest problem highlighted by the witnesses and the Committee members was the need for researching early Alzheimer’s onset and improving diagnosis. Chairwoman Collins questioned Ms. Harden on her input about diagnosis practices, particularly with the BOLD Act. Ms. Harden emphasized that early diagnosis is necessary for supporting and caring for individuals with Alzheimer’s, as it gives families and caregivers time to prepare for changes and end-of life decisions. Ms. Harden recommended that the BOLD Act outline the next steps to address how to deal with a family member diagnosed with Alzheimer’s, what to do when a patient’s finances run out, and provide greater awareness to incite furthering the conversation about the disease with healthcare providers.
Ms. Osborne added that early diagnosis will lead to less use of Medicaid and Medicare services, as earlier detection provides more time for individuals to understand the need of care and not draw on extreme funds and services when the diagnosis is too late.