Portrait of smiling multi-generation family sitting

Caregiving Navigation Hubs: A Critical Resource for Older Adults and their Families

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

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Frustrated woman with laptop

NORC Study Shows Most Older Adults Experience Anxiety and Frustration While Selecting Long-Term Care

Twenty-four percent of U.S. adults ages 50 and older say they, or a loved one needed long-term care in the past year, according to a new, national survey commissioned by Nexus Insights, a think tank focused on older adults. The research was conducted by the well-respected NORC at the University of Chicago. The findings illustrate the widespread need for information and guidance about long-term care services among an aging population and their caregivers, a need that experts say will grow exponentially in the future.

Nearly 1 in 4 older adults said they or a loved one needed long-term care in 2022

 

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Most older adults said the process of selecting long-term care caused anxiety (53%) and frustration (52%), while few said they felt confident (23%), at peace (23%), or happy (14%) while making a choice. Researchers say the survey findings suggest a need for more consumer-friendly resources to help families navigate care options.

Anxiety and frustration finding long-term care

 

“Making a decision about long-term care is a maze full of emotional twists and turns, dead ends, and setbacks,” said Robert Kramer, founder and fellow of Nexus Insights. “The lack of a consumer-friendly system to help families navigate the staggering array of decisions that must be made quickly during a healthcare crisis boosts families’ stress. It can result in making decisions that lead to poorly coordinated, lower-quality care.”

According to the survey, older adults said it was extremely important to have additional information about the cost of care and options to pay for it (69%) and the different types of long-term care services available (63%).

Nexus Insights released a report earlier this year detailing the often frustrating and confusing process facing many older adults when making decisions about long-term care for themselves or a loved one. It called for a national long-term care navigation hub to help older adults discover and assess options, educate them on available support and funding, select and connect with the option that is best for them, and continuously evaluate their needs as health and financial statuses change. Kramer said navigation resources are needed immediately to support the aging Baby Boomer population, many of whom not only serve as caregivers to older parents but will soon need long-term care themselves.

“Many families reckon with a long-term care system that’s nearly impossible to navigate and provides little-to-no support for families making life-and-death decisions,” said Caroline Pearson, senior vice president at NORC at the University of Chicago, who also serves as a Nexus Insights fellow. “Most people will eventually have to make decisions about long-term care for ourselves or a family member, so creating a consumer-friendly long-term care navigation system should be high up on the nation’s list of to-dos.”

People likely to turn to family for long-term care advice

 

The poll was conducted between November 11 and 14, 2022, during a monthly Omnibus survey. It included 1,014 interviews with a nationally representative sample of adults age 50 and older (margin of error +/- 4.34 percent points). The AARP and NORC’s Foresight 50+ probability-based panel is designed to be representative of U.S. adults age 50 and older.

DOWNLOAD THE SURVEY: One in Four U.S. Older Adults Needed Long-Term Care for Themselves or a Loved One in 2022

READ OUR REPORT: Where Am I, Where Do I Go: The Missing Entry Point to Long-Term Care Solutions for Older Adults and Their Caregivers

 

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Long-Term Care Solutions

Navigating the Maze of Long-Term & Post-Acute Care: A Report by Nexus Insights

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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Long Term Care Staffing Shortages

The Solution for Long-Term Care Staffing Shortages? Innovative Immigration Policies

Who will care for aging baby boomers? This was the question posed to an expert panel at an event that explored the links between immigration policy and long-term care policy. The online event was hosted by the Center on Children and Families of the Brookings Institute. It brought together leading researchers to present their findings on the role of immigration in caregiving, and to discuss the country’s caregiving needs, and policies to help address them.

Highlights of the discussion included:

  • The link between increased immigration and the increased support available for aging in place.
  • Economic benefits to family caregivers from larger labor pools supported by increased immigration.
  • Improved quality of care that results from a larger labor force and increased immigrant labor.

Anne Tumlinson, CEO of ATI Advisory and a Nexus Fellow, was on hand to provide her analysis of the policy landscape. She pointed to the severe economic impacts experienced by families and family caregivers that results from the lack of a national long-term care system in the United States.

Other challenges raised during the forum include the persistently low wages in the caregiving industry, enormous gaps in Medicare coverage for needed services for older adults, confusing variation by state of the types of services covered by Medicaid, and the difficulties that arise in addressing changing labor needs caused by inflexibility in employment-based channels for legal migration.

Possible solutions proposed included:

  • Addressing the inflexibility in the employment-based channels for legal immigration, to help address shortages and changing caregiving labor needs.
  • Creation of a national long-term care system to serve American families equitably and prevent financial hardships for families caring for loved ones.
  • Reallocating resources to address the persistent low wages in the caregiving industry, and to help create incentives for caregivers to remain in the field.

Read more at Brookings.
View the full discussion.

 

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Wage Increase for Long-Term Care Workers

Leading Industry Experts Support Wage Increase for Long-Term Care Workers

LeadingAge, the country’s second-largest long-term care association, has called upon President Biden to boost worker pay by $5 an hour, according to a report in McKnight’s Long-Term Care News. They are also asking for one-time relief payments of $2,000. These requests are part of a six-point relief proposal to address widespread long-term care worker shortages. The proposal was sent to President Biden in a letter from Katie Smith Sloan, CEO of LeadingAge.

David Grabowski, health policy expert at Harvard Medical School and Nexus Insights fellow, fully supports the plan. He is quoted in the article saying that we “would be in much better shape today if policymakers had put this in place at [an earlier] time” but adds that “it’s not too late to do this now.”

Grabowski says that supporting workers in long-term care will help alleviate the staff shortages that lead to overwork and burnout. “Policymakers must also increase benefits and ensure better working conditions. All too often, staff are overworked due to staffing shortages.”

Read the full article in McKnight’s Long-Term News

 

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saving for long-term care

Hey Boomer: Time to Start Planning How to Pay for Long-Term Care

Hey Boomer! Sara Zeff Geber has an important message for you: It’s time to make a plan for your long-term care.

In her recent Forbes article, “Hey Boomer: Medicare Won’t Cover Your Long-Term Care,” Zeff Geber, the author of Essential Retirement Planning for Solo Agers, and a Nexus Insights Fellow, shared some surprising facts. In a  2019 study by Bankers Life, “nearly half of the middle-income boomers surveyed believe they will need care in later life, but almost 80% of them have no plan or savings toward it.”

And, indeed, many seniors will need care later in life. Zeff Geber points to a new report from the Department of Health and Human Services, which found that, “Men over 65 men will require an average of 2.3 years of long-term care; women will require an average of 3.2 years.” The expected price tag? “Men who turn 65 in the next few years can expect to spend an average of $142,000 on long-term care needs (nursing and help with everyday functions like bathing, dressing, grooming, etc.). For women, that figure is $176,000.”

Those large numbers are shocking enough. But, according to Zeff Geber, “A shocking 56% of boomers mistakenly believe that Medicare will pay for long-term (sometimes called “custodial” care). They are sadly mistaken.” 

Geber offers some suggestions for Boomers to start getting prepared. “The best planning you can do for yourself is to save the money you will need for this kind of care.” Another option? “Take out a long-term care insurance policy.” And avoid the worst option, “Having your daughter/son/niece/nephew/sibling leave their family or work in order to provide you the care you need.”

Read the full article.

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