A Serial Cross-Sectional Study of Older Adult Caregivers in the United States from 1997 to 2019

Background: There is a current and projected discrepancy between the number of older adults requiring care in the United States and the number of health care professionals available to provide that care. This incongruity may shift care responsibilities onto informal, non-professional, and unpaid caregivers — a population that is itself aging. Although international research exists on older adult caregivers, there is a need to explore the U.S.-specific older adult caregiver (OAC,  64 years old) experience, given this country’s distinct values, culture, and policies surrounding aging and caregiving. This study investigates the demographics and descriptive context of OACs from 1997 to 2019 in the U.S., as well as compares and contrasts OACs with caregivers < 64 years old in 2019. Methods: Repeated, cross-sectional study using secondary data from national surveys. Participants include 153, 156, 385, 529, and 537 U.S. OACs in 1997, 2004, 2009, 2014, and 2019 respectively, Statistical tests used: Jonckheere-Terpstra (J-T) and Cochran-Armitage tests for trend, chi-square tests of independence, and the Mann-Whitney U-test. Results: In 1997, the median age of U.S. OACs was 70.0 years old, which rose to 73.0 in 2019. The percentage of OACs grew each year, with OACs being 10–13% of the respondents in 1997 and 2004 to roughly 30% in 2014 and 2019. OACs became more diverse in terms of race and sexual orientation, and more balanced in terms of sex, income, and education. The majority identify their health as good/very good, and most do not think caregiving has impacted their health. The median length of time caregiving decreased from 3 to 2 years from 1997 to 2019. Significant differences were found between OACs versus caregivers < 64 years old in 2019 in the number of instrumental activities of daily life performed; choice to become a caregiver; type of caregiver they are; if they needed more information managing their own stress; and if they had plans in place for their own future care. Conclusion: The role of OAC is becoming an increasingly new and shared experience among a more varied group of individuals in the U.S. than previously. Recommendations based on these results include screening patients  64 years old by a primary care provider (PCP) to determine if a patient identifies as a caregiver or is performing common caregiver duties. Earlier detection of caregiving status could lead to earlier interventions. Additional research should investigate the unique needs and circumstances of OACs in order to provide targeted interventions to improve their lives and the lives of their care recipients.