While there are many benefits that come with getting older, there are also challenges. I should know, having spent the past 20 years training and working in gerontology, or the study of aging. As a professor at the University of Utah College of Nursing with a doctorate in gerontology, the Director of the Utah Geriatric Education Consortium and a member of the Utah Commission on Aging, it’s a wonder I can think about anything other than what it means to get older.
But all aging isn’t created equal. For the more than 34,000 people in Utah currently living with Alzheimer’s disease and their 99,000 unpaid caregivers, aging takes a very different toll.
For more than two decades, I have been a volunteer with the local chapter of the Alzheimer’s Association. As a volunteer, I interact on a regular basis with people living with dementia while also supporting family and non-kin care partners who are trying to navigate the dementia journey. Many caregivers are dealing with exhaustion and grief and are desperate for educational, financial and health care support. And with the number of people in Utah living with Alzheimer’s expected to climb to 42,000 by 2025, more and more of our neighbors will be directly impacted by the disease.
One critical thing I have learned as a researcher and volunteer is that personal values and preferences related to quality care are unique in the context of dementia compared to other chronic diseases, like heart failure or cancer. Our studies have demonstrated how important it is to empower families impacted by Alzheimer’s disease to engage in critical conversations about future medical and long-term care, prior to dementia advancing to the later stages.
While challenges may accompany aging, there are reasons to think it will get easier. Funding for critical Alzheimer’s research like mine and others across the nation has exponentially increased over the past decade, bringing new advancements to the forefront.
A more than seven-fold increase in research funding has been a direct result of the National Alzheimer’s Project Act (NAPA) being signed into law (P.L. 111-375) in 2011. NAPA led to the creation of a national strategic plan to address the growing Alzheimer’s crisis and changed the way the nation addresses Alzheimer’s and other dementia. Prior to passing this legislation, there was no coordinated strategy to advance knowledge about Alzheimer’s disease, investigate ways to reduce risk or discover new biomarkers for diagnosis and drug development.
Researchers like me have benefited greatly from higher funding levels at the National Institutes of Health (NIH). Prior to NAPA, the amount of funding dedicated to Alzheimer’s and other dementia was small, and the research funding was highly competitive, allowing for only a select small group of studies to be supported. This increased research funding translates into better health care and support programs for individuals living with dementia and their care partners.
To continue these advances, this legislation needs to be renewed through the bipartisan NAPA Reauthorization Act (S. 133 / H.R. 619), which continues the government’s focus on Alzheimer’s and includes an emphasis on healthy aging and reducing dementia risk as well as addressing health disparities in underrepresented populations. Additionally, the bipartisan Alzheimer’s Accountability Act (AAA) — which requires scientists at NIH to submit an annual budget specifically for Alzheimer’s and dementia research directly to Congress — is also set to expire in 2025. Without renewing these critical pieces of bipartisan legislation, the impact of aging and Alzheimer’s disease is going to get significantly worse in Utah and the rest of the country.
In the past several years, discoveries to treat, slow and prevent Alzheimer’s have significantly increased thanks in large part to the original laws. Researchers and scientists have made monumental advances in Alzheimer’s and dementia, including the first ever Food and Drug Administration (FDA)-approved treatments that address the underlying biology of Alzheimer’s, and progress on simple, inexpensive diagnostic tools, like a finger prick blood test, to detect the disease.
While aging is always on my mind, it should be on everyone’s — and especially our policymakers’. I hope we can count on Sen. Mike Lee to keep making Alzheimer’s a priority by reauthorizing these meaningful, bipartisan policies.
Kara Dassel
Kara Dassel, Ph.D., FGSA, FAGHE, is a board member for the Utah Chapter of the Alzheimer’s Association, a member of the Utah Commission on Aging, and a member of the Utah Department of Health Alzheimer’s Disease Advisory Council.
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