Coordinating caregiving for aging loved ones is a complicated and frustrating task for families. And the problem is growing.

According to a recent article in Next Avenue, “It generally starts with a crisis: Your parent shows signs of dementia…or is about to be discharged from a serious hospital stay…or requires help with daily activities of living. What do you do? Where do you turn? It’s the little-discussed part of long-term care that leaves many of the nation’s 22 million family caregivers for older loved ones bereft and befuddled.”

“We’re failing tens of thousands of older adults and their families,” said Bob Kramer, Founder and Fellow of Nexus Insights.

Nexus Insights is a think tank advancing the well-being of older adults through innovative models of housing, community and healthcare.

In early 2022, Nexus Insights brought together long-term care providers, caregiver advocates, tech-driven startups and policy experts in its first ‘Nexus Voices’ salon to discuss how to help older adults and their caregivers better navigate the complex and fragmented array of long-term care and aging services. The result was a report released in September 2022, “Where Am I, Where Do I Go: The Missing Entry Point to Long-Term Care Solutions for Older Adults and Their Caregivers.”

This report was the subject of the Next Avenue article, written by Richard Eisenberg.

Eisenberg spoke to several of the report’s authors, including Anne Tumlinson, CEO of ATI Advisory and a Nexus Fellow. “The primary challenge that most of my peers and friends and family were experiencing was entering into that phase of their lives when they were suddenly thrust into family caregiving roles and feeling like there’s no place to go,” Tumlinson said. “In the best-case scenario they’re getting a hospital discharge planner handing them a long list of organizations who are like, ‘Good luck. Here you go.'”

Caroline Pearson, another report author concurred. Pearson, formerly the Senior VP of Health Care Strategy at NORC at the University of Chicago, and now the Executive Director for The Peterson Center on Healthcare, and a Nexus Fellow. “Unfortunately, most people find themselves in these urgent scenarios that are sort of a call for help unexpectedly,” she said.

In fact, Nexus recently partnered with NORC to conduct a survey on this issue. The survey showed that 1 in 4 older adults needed long-term care services for themselves or a loved one in just the previous 12 months. It also echoed the report’s assertion that caregivers experience frustration and anxiety during the process.

The Nexus Voices report offers a powerful solution, according to the article, “A national, independent, trusted hub system of caregiving navigators who would be accessible to everyone and serve as a central doorway to long-term care services and supports.”

“For every single family to be creating a long-term care service delivery system is very inefficient from a societal standpoint and an economy standpoint,” said Tumlinson.

The solution would have to be national in scope. “There was broad-based agreement [among the salon participants] that creating the kind of awareness to make these hubs as visible as your local drugstore or post office was going to take a national effort, and a level of funding that was probably going to have to be federally driven,” said Kramer.

According to the article, a local example of such a hub was launched earlier this year in Ohio. The NaviGuide program, created by United Church Homes in Ohio, offers these types of services to its 166 clients. The program was inspired by a family crisis for its creator Terry Spitznagel, senior executive vice president and chief growth officer for United Church Homes. Spitnagel said, “I’ve been in senior services for three decades, but I just fell apart trying to help my father navigate the aging journey. I couldn’t manage it.”

The article sees the NaviGuide program as a positive step in the right direction. “If programs like United Church Homes’ NaviGuide are proven financially viable or federal or state governments earmark money for caregiving navigators, you may start seeing these experts pop up around the country.”

In fact, other recent reports echo the Nexus recommendations.

“There are real opportunities to move forward on this,” said Kramer. “But it’s going to take keeping the issue in the limelight and building momentum and seizing opportunities.”

And, the article suggests, “It may also require more people finding themselves thrust into becoming family caregivers or needing to coordinate care.”

Said Tumlinson: “You have to go through it and then be stunned. Then you say, ‘Why is this not being fixed? How is this possible?'”

Read the article at Next Avenue.

Read the Nexus Report
Read the Nexus Survey