PROJECT SUMMARY
Alzheimer’s disease and other dementias are a growing public health concern, currently affecting nearly 8
million older adults and 16 million informal caregivers in the U.S. Informal caregiving—unpaid care by family
members or friends—for persons living with dementia (PLWD) is uniquely demanding, with significant financial
and emotional impacts. While the population continues to age and the number of PLWD requiring assistance
grows, the pool of potential informal caregivers is also contracting, creating intense pressure to maintain the
health and wellbeing of both caregivers and the PLWD for whom they provide care. There is an urgent need to
understand how informal caregiving impacts both PLWD and caregiver health care use, and how serious
illness for a PLWD or caregiver impacts the health care use of the other member of the dyad, to inform future
caregiver interventions and policy. The goal of this K99/R00 Pathway to Independence Award is to prepare Dr.
Lianlian Lei for a career as a successful independent health services investigator focused on disentangling the
links between informal caregiving and how PLWD and their caregivers engage and interact with the health care
system. Dr. Lei’s background and training in health services research, policy, and economics provide her with
a solid foundation for the proposed work, but in order to transition to independence she requires additional
skills and experience that will be gained through a coordinated program of research, mentorship, and didactics
during the K99 phase of the award period. This will include training and experiences in: (1) clinical exposure to
caregivers of PLWD; (2) skills to analyze complex, nationally representative survey data; (3) advanced
methods of causal inference using econometric models; and (4) career skills needed to transition to
independence, including research-related leadership and grantsmanship. Building on her previous research
and training examining health care use and costs for PLWD, Dr. Lei’s research will use data from nationally
representative surveys, including the National Health and Aging Trends Study and the Health and Retirement
Study, both linked with Medicare claims data to identify the impact of informal caregiving on health care use of
both PLWD (Aim 1.1) and caregivers (Aim 1.2), comparing instrumental variable (e.g., number of daughters,
market supply of formal care) models and panel data fixed effects models. Aim 2 will further apply the panel
data fixed effects models in HRS-linked Medicare claims to examine the impact of caregiver serious illness on
PLWD health care use, while Aim 3 will examine the impact of PLWD serious illness on caregiver health care
use. Upon successful completion of the study, findings will yield key knowledge of informal caregiving and
serious illness to enable better identification of high-risk PLWD and caregivers, and will inform future targeted
interventions to promote the health and wellbeing of both PLWD and caregivers. These results will provide the
basis for a future R01 grant application targeting high-risk PLWD and caregivers following serious illness.
