Navigating the Maze of Long-Term Care & Post-Acute Care

When an older adult experiences a crisis that requires post-acute or long-term care services and supports, they and their caregivers must make critical decisions, fast. What awaits them, however, is a maze of dead ends and poor information that stand in the way of getting the help they need.

“Older adults and their families enter a maze of twists and turns, dead ends, and wrong way streets when a life crisis forces them to consider their care options. Critical decisions about long-term care must be made quickly, with scarce information or resources, let alone supportive guidance to assist them in their time of crisis.” – Bob Kramer, founder of Nexus Insights

In February 2022, Nexus Insights hosted their inaugural ‘Nexus Voices’ session with 18 leading experts in the fields of aging policy, long-term care, senior housing and caregiver advocacy to talk through and tackle this issue.

The Outcome: A Nexus Voices Report

The result is the recently published report, “Where Am I, Where Do I Go: The Missing Entry Point to Long-Term Care Solutions for Older Adults and Their Caregivers”. This comprehensive and actionable report highlights the lack of infrastructure to help guide older adults and their families to long-term care services. The report proposes “Navigation Hubs” to help families understand their long-term care needs and select the best options for them. These hubs would serve as central doorways to existing supports and services—whether it’s home-based care, transportation or meal services, senior housing or nursing home care. The hubs would have a national presence but a hyper localized focus with counselors, or navigators, who understand the resources available in their communities and how to help older adults and their families access them.

“The factors that shape care decisions vary from family to family, but all families need an easy-to-use, accessible hub of information that clearly communicates the options that are available to them in their community,” said Anne Tumlinson, CEO of ATI Advisory and a contributor to the report. “With a growing number of older adults needing care, we have to act now to build the care infrastructure families need.”

Discussion participants outlined four primary responsibilities of the Navigation Hubs. They are:

Discover & Assess the long-term care needs of older adults, their families, and caregivers.
Educate older adults, their families and caregivers on the housing and caregiving support available to them as well as funding sources.
Select & Connect older adults with the best long-term care setting, supports, and services that meet their needs.
Reevaluate the needs of older adults as their health and financial statuses change.

“You can’t solve a problem until you’ve identified it and defined it,” said Kramer.

“Then you’ve got to define what are the key components of any solution. And we’ve laid that out with the navigation hubs and their four functions. And then we asked what we could learn from the failures and the successes of programs to date, to create our criteria. Finally, the path forward must be a joint effort involving both the public and private sectors. We demonstrated that there are aspects of differing programs from government-funded resource centers to tech-enabled employer options to private-pay models that could be incorporated into this solution.”

An Urgent Problem

In its conclusions, the report urges quick and decisive action to build navigation services for older adults that put families in the center. The family in crisis needs help now and cannot wait for lawmakers and government agencies to overhaul the long-term care infrastructure. This requires a national commitment to increased funding and an openness to reimagine existing solutions. Existing public, private-pay and employer-based programs could work together to make these hubs a reality by combining their infrastructure, experience and delivery models.

The Nexus Voices Participants

Nexus Insights Host Committee

David Grabowski, PhD, professor, Harvard Medical School, fellow, Nexus Insights
Bob Kramer, founder & fellow, Nexus Insights, co-founder, former CEO & strategic advisor, National Investment Center for Seniors Housing & Care (NIC)
Caroline Pearson, senior vice president, health care strategy, NORC at the University of Chicago, fellow, Nexus Insights
Sarah Thomas, CEO, Delight by Design/MezTal, fellow, Nexus Insights
Anne Tumlinson, CEO, ATI Advisory, fellow, Nexus Insights

Discussion Participants

Gretchen E. Alkema, PhD, former vice president, policy and communications, The SCAN Foundation
Alice Bonner, PhD, senior advisor for aging, IHI, and adjunct faculty, Johns Hopkins University School of Nursing
Ryan Frederick, founder & CEO, Smart Living 360, fellow, Nexus Insights (facilitator)
Lindsay Jurist-Rosner, CEO, Wellthy
Ruth Katz, senior vice president for policy, LeadingAge
Sean Kelly, president & CEO, The Kendal Corporation
Suzanne Kunkel, PhD, executive director, Scripps Gerontology Center, Miami University
Katy Lanz, chief strategy officer, Personal Care Medical Associates
Brian Petranick, group president, Neighborly
Cheryl L. Phillips, M.D., president and CEO, Special Needs Plan Alliance
Paul Saucier, director, Office of Aging & Disability Services, Maine Department of Health and Human Services
John Schall, CEO, Caregiver Action Network
Bill Thomas, chief independence officer, Lifespark, fellow, Nexus Insights

Read the Long-Term Care Access Report

Read the full report
Read the executive summary
Read the press release

About Nexus Insights

Nexus Insights is a think tank advancing the well-being of older adults through innovative models of housing, community and healthcare. We are a diverse group of thought leaders and stakeholders in aging and healthcare. Our goal is to spark change by sharing innovation across traditional silos, convening leaders from differing perspectives and bringing positive, life-affirming ideas into the public domain.

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