Table 2.

Overview of results.

Factors and Sub-Sections	Barriers (B) and Facilitators (F)	Research Directions	Policy Directions
1. Better characterizing PLACI
Limited understanding of PLACI	-B. Lack of systems to identify PLACI -B. Heterogeneity of PLACI -B. PLACI underreported in national databases	-Report numbers and characteristics of PLACI, with emphasis on caregivers’ absence -Develop replicable tools to identify PLACI -Flag PLACI at risk
		-Report protocols on PLACI in national databases
Understanding specific needs of PLACI	-B. Services often focus on physical needs	-Identify overall unmet needs -Illuminate the range of services needed	-Increased focus on cognitive, mental, and emotional needs
2. Leveraging the diagnosis of CI
Unintended adverse consequences of the diagnosis of CI	-B. Loss of privileges and status following diagnosis of CI -B. A diagnosis can disqualify PLACI from services -B. A diagnosis does not qualify PLACI for LTSS	-Identify effects of diagnosis, with an equity focus -Understand whether PLACI are underdiagnosed
Learning how to empower PLACI at the point of diagnosis and beyond	-F. Consider diagnosis as an opportunity to empower PLACI	-Identify services most useful at the point of diagnosis -International comparisons to understand best practices	-Provide wrap-around services to PLACI at the point of diagnosis
3. Expanding and enhancing services
Learning how to elevate the status of home care aides	-F. Home care aides provide essential LTSS -B. Medicare does not pay for most LTSS -B. Steep costs of LTSS paid out of pocket -B. Restrictive income eligibility criteria to access Medicaid home- and community-based services	--Provide evidence of the effect of the presence of home care aides on PLACI wellbeing -Identify priorities/concerns of home care aides and their employers -Identify mechanisms to increase home care aides’ status -Identify the most appropriate supports and services for family members and other caregivers -Understand how to honor immigrant home care aides -International comparisons to understand best practices	-Expand criteria to access publicly paid home care aides -Ensure access to qualified, affordable, and language-concordant home care aides -Increase home care aides’ standing
Restrictive income eligibility criteria to access Medicaid home and community-based services	-B. Only available to a fraction of PLACI	--Estimate PLACI who cannot qualify for public home care aides -Elucidate effects of spending down to access LTSS -Elucidate effects of Medicaid estate recovery program
Adapting to diverse cultural values	-F. Culturally relevant LTSS likely to increase acceptance	-Understand the features of culturally appropriate services
Learning how to have a unique integrated point of reference to access services	-B. Information about LTSS is hard to find -B. Siloed services -B. Shortages of home care aides -B. Crisis-driven services -B. Systemic racism -B. Limited language-concordant services	-Understand the feasibility of an integrated point of reference -Understand whether and how innovative initiatives to provide one-stop point of service can be tailored to PLACI
Learning how to incorporate technology in PLACI’s LTSS	-F. Untapped opportunities of technologies -F. Pandemic accelerated progress -B. Unsolved ethical issues	-Understand what technologies empower and support PLACI -Draw lessons from the successful use of telehealth to manage chronic conditions -Address ethical issues -Understand perspectives of diverse PLACI -Understand how to increase LTSS workers’ technological skills