When asked by the ASA Generations Editorial Advisory Board to coedit an edition focused on "Living Well with Dementia," I immediately jumped at the opportunity. I have spent most of my career working on healthy aging and financial security for older adults, but people living with dementia have often been treated as beyond help. Both physicians and patients often regard a diagnosis as a death sentence. “Diagnose and Adios,” as my friends from Texas refer to the way our healthcare system typically treats people living with the condition.
Due to overall population aging trends, the sheer numbers of people living with dementia today and projected into the future demand that we approach the disease differently. In the United States, 6.5 million people are living with dementia today, and that number is projected to grow to 12.7 million by 2050 (Alzheimer’s Association, 2022a). Age is still the greatest risk factor for dementia. After we turn age 65, our risk of developing dementia doubles every five years. By age 85, nearly one in three of us will have the disease; almost two-thirds of those people are women.
Dementia is an umbrella term describing the loss of various cognitive functions, such as memory, thinking, and reasoning. The most common types are Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia (National Institute on Aging, 2022). Life expectancy after diagnosis ranges, on average, from five to ten years. However, some people live longer, as much as 20 years. Because of its slowly progressive nature, some clinicians have begun to consider dementia a chronic disease. However, the management of dementia is considerably different from managing other chronic conditions due to behavioral complications and the progressive loss of capacity (Reuben et al., 2022). As such, dementia demands different approaches.
Dementia demands different approaches than managing other chronic conditions.
You might ask, can you truly live well with dementia? The series of articles in this journal undoubtedly demonstrate that you can. My co-editor, Doug Pace, and I are so grateful to the amazing authors who have shared their ideas for how we can live well with dementia. Of course, each comes at the issue from a slightly different perspective. Still, they all share tremendous insights, evidence, and passion for improving the lives of those living with dementia and their care partners.
We begin the issue with two powerful essays to keep us grounded in real-world, lived experiences. First, Betsy Groves, who is living with Alzheimer’s disease, describes finding peace with her new identity and shares tips for other individuals trying to live well with dementia. Then, Tom Allen shares his experience as a caregiver for his wife over the past 12 years. He eloquently recounts his journey and all the difficult choices along the way, ultimately learning to lean into reality, to let go as necessary, and to let come whatever is next.
Next, we explore how the pre-diagnosis stage of the disease has changed. Janell Gore, Benjamin Denno, John D. Omura, Matthew Baumgart, and Lisa C. McGuire present compelling evidence that addressing risk factors for cognitive decline and dementia may reduce the number of people with dementia in the future. The authors put forth a call to action for the public health community to lead the effort in addressing modifiable risk factors and social determinants of health for dementia. Soo Borson and Joshua Chodos, co-leads of the BOLD Public Health Center of Early Detection of Dementia, summarize the current state of dementia detection, the rationale for early detection, and opportunities to close persistent gaps in knowledge and policy.
And Sarah Lenz Lock, Laura Mehegan, and Chuck Rainville present findings of two nationally representative AARP research surveys focused on the stigma associated with cognitive decline and aging. The surveys found that the stigma surrounding dementia is pervasive among individuals and healthcare providers. The authors offer practical solutions to encourage older adults to proactively engage in healthy lifestyle activities that have been demonstrated to reduce their risks, even for those diagnosed with cognitive impairment or dementia.
Each approach comes down to treating people with dignity and respect and defining what matters most to them.
In the next section, we move into the post-diagnosis world. We hear from Alice Bonner, Amy Walsh, Jodi Shue, Grace Morton, and Terry Fulmer, who outline the history of Dementia-Friendly America and efforts in individual states to address the needs of people living with dementia and their caregivers within an Age-Friendly framework. Next, Lenise Cummings-Vaughn documents the vast disparities in dementia diagnosis and care delivery between White individuals and those who are more racially and ethnically diverse. Researchers project that nearly 40% of all Americans living with dementia will be Black or Hispanic in 2060 (Matthews et al., 2018). With our aging population becoming more diverse, we must explicitly link race and ethnicity data to quality and outcome measures to hold health systems and plans accountable for reducing disparities (Super, Ahuja, and McDermott, 2021).
Finally, Sam Fazio, Lauren Stratton, Chelsea Kline, and Sheila Molony explore the interconnected concepts of person-centered care, living well, and well-being based upon discussions with the Alzheimer’s Association Early-Stage Advisory Group. Building upon these experiences and published research, the authors advocate for providing “just enough” support to maximize independence and decrease functional decline. Each approach ultimately comes down to treating people with dignity and respect and defining what matters most to individuals living with dementia.
In the last section of the journal, two articles examine the role of technology in shaping care delivery and supportive services for people living with dementia and their caregivers. Jack York explores how technologies have changed and the tremendous possibilities they provide to improve the quality of life of those living with dementia, as well as for family and professional caregivers. He gives numerous examples, from motion sensors and interactive cameras to touchscreen systems incorporating music, visuals, and games that can dramatically improve the experience of people living with dementia and their care partners.
With the arrival of COVID-19, many community-based organizations had to quickly adapt to using remote interventions for families with dementia. Kylie Meyer, Nancy McPherson, and Donna Benton examine two case studies to assist dementia care service organizations that want to leverage their remote interventions to implement evidence-based programs. In their article, Kezia Scales and Laura M. Wagner envision a dementia-capable direct-care workforce. The authors present compelling evidence that direct-care workers are foundational to improving dementia care, but these workers tend to be underprepared, underrecognized, and undervalued for their pivotal role. The authors put forward four strategies to tackle these structural and systemic barriers. To close out the issue, my co-editor and friend, Doug Pace, provides his perspective on looking in the rearview mirror and the road ahead on dementia and living well.
Nora Super, MPA, is a senior fellow at the Long-Term Quality Alliance in Washington, DC. She may be contacted at firstname.lastname@example.org.
Photo credit: Victorpr/Shutterstock
Alzheimer’s Association. (2022a). Alzheimer's disease facts and figures. 19–36. www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
Matthews, K. A., Xu, W., Gaglioti, A. H., Holt, J. B., Croft, J. B., Mack, D., & McGuire, L. C. (2018). Racial and ethnic estimates of Alzheimer's disease and related dementias in the United States (2015–2060) in adults aged ≥65 years. Alzheimer's & Dementia, 15(1), 17–24.
National Institute on Aging (2022). What is dementia? Symptoms, types, and diagnosis. www.nia.nih.gov/health/what-is-dementia
Reuben, D.B., Epstein-Lubow, G., Evertson, L.C., & Jennings, L.A. (2022) Chronic disease management: why dementia care is different. American Journal of Managed Care, 28(12)
Super, N., Ahuja, R., & M. McDermott (2021). Scaling comprehensive dementia-care models. https://milkeninstitute.org/sites/default/files/2021-11/Comprehensive%20Dementia%20Care%20Models.pdf