On November 7-8, 2023, the Gateway held its Long-Term Care (LTC) Policy Conference in Washington, DC. Fifteen researchers presented on different aspects of LTC systems challenges, with two discussion panels giving policy and research experts the chance to weigh in on how these findings can be applied to systems improvements and impact. On day one of the conference, a panel of policymakers and researchers discussed how scientific evidence can best inform LTC policy. On day two of the conference, a panel of research leaders gave their perspectives on critical future directions for research on LTC. Sally Stearns, Editor-in-Chief of Health Economics and Professor of Health Policy and Management at the University of North Carolina at Chapel Hill, was joined by Julie Bynum, Principal Investigator of the Center to Accelerate Population Research in Alzheimer’s (CAPRA) and Professor of Geriatric and Palliative Medicine at the University of Michigan, and Courtney Van Houtven, Professor in the Department of Population Health Science at Duke University School of Medicine and at the Duke-Margolis Center for Health Policy. Each panelist highlighted the rich body of research presented throughout the course of the conference and called attention to underrepresented issues which have seen less focus both in the papers presented and in the literature overall.

Housing Policy as Prerequisite to Aging in Place

Sally Stearns kicked off the panel discussion by highlighting two issues that bookend LTC: housing and palliative care. With the Centers for Medicare & Medicaid Services (CMS) poised to roll out an expansion of palliative care coverage, Dr. Stearns emphasized the importance of global comparisons around this transitional and end of life service made possible in part by the Gateway’s work in harmonizing end of life survey data across its global network of health and retirement surveys. Housing was also highlighted as a particularly important issue in home and community-based services policy research. Many of the papers presented at the conference underscored the importance of home-based care interventions, highlighting their value as well as policy constraints.

To spark research interest, Dr. Stearns described three programs that have been innovating at the intersection of housing and LTC to enable older individuals to age at home. One is the Elder Care Economy Innovations Hub, an initiative that develops new ideas and resources in support of housing options and community interactions that help seniors to age in place. Another model called Community Aging in Place, Advancing Better Living for Elders (CAPABLE) dispatches interdisciplinary teams comprising a nurse, an occupational therapist, and a handy worker to assess an individual’s needs in the home with a focus on functional impairment. Interventions such as home modifications reduce healthcare costs, and the program has targeted low-income populations with Medicaid program support in 23 states. Finally, Residential Dementia Villages have emerged as a new model for elderly individuals with cognitive impairments where treatment is blended with aspects of normal community life. While financing and equity are both concerns with this costly model, the novel approach in centering the intervention around an innovative housing option merits further consideration and evaluation.

Focusing on the “Who” in Research: Elevating Care Recipient Perspectives

Dr. Julie Bynum acknowledged the research presented throughout the conference which analyzed types of care, caregiver impacts, and the importance of place in service provision, while pointing out that less attention is paid to the characteristics of care recipients themselves. While some papers touched on these issues, there was an outsized focus on functional impairment which can obscure the nuances around impairments and care needs that do not necessarily lead to functional disability. Calling for more focus on heterogeneity in the care recipient population, Dr. Bynum highlighted two examples. Those with cognitive impairments such as dementia were referenced regularly during the conference, yet where they fit into models of service provision and need remains unclear, given that many of these individuals can function normally and require only a limited amount of supervision for their safety until the late stage of dementia. Another population subsegment that does not fit neatly into common frameworks of aging populations in LTC research is the younger population requiring lifelong LTC. While in the US there is a separate system for individuals with intellectual disabilities or behavioral health issues, aging populations still dominate the LTC market and policy discourse, a dynamic that will only be exacerbated as global populations age and “crowd out” younger individuals in need of long-term services and supports. The research community’s policy recommendations should acknowledge this heterogeneity and mention any lack of representation in their research.

Informal Care: Spotlight on Gender and Heterogeneity

Dr. Courtney Van Houtven closed out the panel by focusing on informal care and family caregiving, echoing Dr. Bynum’s call for greater attention to heterogeneity in data and policy research. Acknowledging the focus on income and gender inequities in the research presented during the conference, Dr. Van Houtven urged the room to think beyond average treatment effects in developing models capable of clarifying how gender interacts with other population dynamics that put individuals at risk of poor outcomes such as race and immigrant status. She described informal care as a gender justice issue, requiring more explicit acknowledgement of the fact that women are the most intensive caregivers and also have the worst economic and health outcomes. The compounded effects of informal caregiving for children and for older or disabled adults is also an important focus, particularly in thinking about the long-term effects of these dynamics on younger caregivers. Given the data limitations that drive the paucity of research around these issues, Dr. Van Houtven called for linkages between health and retirement survey data and larger data sources—such as the Social Security data—to address concerns around low sample sizes.

Finally, echoing the other presenters and many of the researchers in the room, Dr. Van Houtven called for a concerted effort to move out of the data world in thinking about how this research can tangibly influence policy and governance. This should involve focusing on policies or programs in different levels and sectors of the economy, including municipal health systems (e.g. local-level geriatric training and support programs) as well as firm-level policies (e.g. paid family leave). In bridging research with policy and practice, the future of LTC lies in mobilizing data to better understand heterogeneity and how different policies intersect to impact those most at risk.