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

Want to be notified when a new blog is posted? Subscribe to our blog and receive posts in your inbox.

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

 

Related Articles

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

 

Want to be notified when a new blog is posted? Subscribe to our blog and receive posts in your inbox.

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.

Want to be notified when a new blog is posted? Subscribe to our blog and receive posts in your inbox.

Bringing together different perspectives with a common passon

Bringing Together Different Perspectives with a Common Passion

Nexus Insights is a think tank comprised of a diverse group of thought leaders and stakeholders in aging and health care (Nexus Fellows) with a shared vision to advance the well-being of older adults through innovative models of housing, community and health care. The goal of Nexus Insights is to affect change by sharing innovation across traditional silos, convening leaders from different perspectives in our Nexus Voices salons, and bringing positive, life-affirming ideas into the public domain.

What makes Nexus Insights truly unique is the diversity of our Fellows. We bring together different perspectives and different backgrounds, leaders with expertise in academic research, government policy, private sector startups, and successful businesses serving older adults. It’s the diversity of perspectives, together with the common passion, that drive the disruptive thinking within Nexus.

Bob Kramer is broadly recognized as one of senior living’s most influential and high-profile thought leaders and connectors. With over 35 years of industry leadership, he has earned the reputation of “agent provocateur” in the seniors housing and care industry and aging services field. He has been described as an ice-cutter and scout in identifying industries and trends that will disrupt the future of seniors housing, aging services, and aging more broadly. Learn more about Bob Kramer at Nexus Insights.

 

Want to be notified when a new blog is posted? Subscribe to our blog and receive posts in your inbox.

Innovation for Senior Living

Are We Being Bold Enough? Bob Kramer Keynotes SLIF 2021

Nexus founder and Fellow Bob Kramer set the tone of this year’s Senior Living Innovation Forum by kicking off the first day of the conference with a provocative keynote speech. “Are we being bold enough?” asked Kramer. “No. The industry demands a significant shakeup.”

What does innovation mean for the next generation of senior living customers? Will they be our customers? Is increased longevity a blessing or a curse? Will the boomers be a vast resource that is both unwilling and unwanted as contributors to our society and economy? What does senior living have to do with it? And what about those who have been left behind in the longevity revolution?

According to Kramer, the upcoming generation of senior living customers “wants nothing to do with senior living” because the image that comes into their minds when they think about senior living is a negative one. It is our job, he said, to reimagine and redefine what senior living can mean for the next generation.  

His keynote set off some lively conversations and debates, with several following speakers referencing and adding further insight to Kramer’s remarks.

Other highlights of the event include a talk from Nexus Fellow and SmartLiving 360 CEO Ryan Frederick about his book, “Right Place, Right Time: The Ultimate Guide to Choosing a Home for the Second Half of Life” and Fellow Sarah Thomas’ interactive session on experience design.

 

Watch Bob Kramer’s entire speech:

 

Photo courtesy of Influence Group.

 

Subscribe to Nexus Insights

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

 

Update on Nexus Fellow May 21s

Nexus Fellow Flash Bulletin: May 2021

As the United States shifts gears from pandemic crisis management to a new post-COVID normal, we must now deal with the aftermath and identify what went wrong and what we can do better. Issues of transparency and loneliness in nursing homes linger. Large corporations that once were oblivious to the older population have found a new market. How will we address the age-old problem of social connection for those who are still isolated, a problem seniors have faced for decades? The entire industry, the way we view older adults, the options for living independently and the implementation of technology, must all be urgently addressed and thoughtfully designed into an actionable plan for the future of aging and longevity.

Our Fellows continue to strive for innovation and reform. Here’s what they’ve been up to:

NEWS:

  • Nexus Fellow David Grabowski, was quoted in an article by the Associated Press on nursing homes’ requirement to report COVID-19 vaccinations at nursing homes. “This is an important development that is months overdue,” said David Grabowski, a Harvard health policy professor who has tracked the industry’s struggles with the outbreak. “Many of us argued that this information should have been published starting in December when the federal long-term care vaccination effort began.”

 

  • Dr. Bill Thomas, Nexus Fellow and creator of The Eden Alternative, Minka, and the Green House Project, is helping value-based care innovator Lifespark (which acquired Tealwood Senior Living.) Dr. Thomas will be leading the efforts to combine the two companies’ operations. He has also created Kallimos Communities, new multi-generational communities with small dwellings clustered around shared green space. Additionally, he has a new project he’s working on with Signature Healthcare — currently called “Canopy” — a cluster of small ADA-accessible houses built close together.

 

  • Bob Kramer, Founder and Fellow of Nexus Insights, was interviewed by Nancy Griffin for SeniorTrade Blog. He defines 5 Boomerville Segments likely to flourish in the future: Wellnessville, where residents will focus on healthy lifestyle, diet and exercise; Margaritaville, resort-style independent living (Minto Communities’ Latitude Margaritaville has three wait-listed locations with more in development); Serviceville, where the emphasis is on volunteerism, mentorship and giving back; Collegeville, where residents focus on continued learning in a communal living environment, and Changeville, for those concerned with making a difference in the world and creating a legacy.

 

  • Preordering is now available for “Right Place, Right Time, a book by Nexus Fellow and CEO of SmartLiving 360, Ryan Frederick. “Place plays a significant yet often unacknowledged role in health and happiness. The right place elevates personal well-being. It can help promote purpose, facilitate human connection, catalyze physical activity, support financial health, and inspire community engagement.”

 

  • Nexus Fellow Kelsey Mellard, CEO of Sitka, sat down with Sanjula Jain Jo on Her Story for a candid conversation about being a healthcare leader and her transition from the Midwest to DC to Silicon Valley, building a resilient team, and overcoming challenges.

 

  • Will seniors continue to buy groceries online post-pandemic? Jody Holtzman, longevity economy expert, formerly of AARP, thinks seniors will split their shopping, using online for staples such as canned goods and going into stores for fresh foods. Some senior consumers claim it’s a social outlet for them. “As the necessity imposed by the pandemic lessens,” Holtzman says, “retailers will have to start to play the price game.” Read more at Blomberg.com.

 

Out and About:

  • Jill Vitale-Aussem, president and CEO of Christian Living Communities, and Nexus Insights Fellow, recently spoke at a session, “Finding success in increasing diversity and inclusion,” at the 2021 Women of Distinction educational webinar. We’d also like to congratulate Jill on joining the SeniorTrade Advisory Board.

Jill Vitale-Aussem joins SeniorTrade Advisory Board

  • On June 30, Nexus Fellow Sara Zeff Geber will be joining experts and thought leaders in the areas of aging, retirement and thriving for the “Boomers Thriving After the Pandemic” virtual summit, hosted by Wendy Green from Hey, Boomer. Other speakers include Helen Dennis and John Tarnoff. Part of the proceeds will go to Meals on Wheels Greenville and The Walk to End Alzheimer’s. For more info visit the virtual summit’s Eventbrite page.

Sara Zeff Geber on Hey Boomer

  • Sarah Thomas, CEO of Delight by Design and Nexus Fellow, recently presented at the Rehab Tech Summit sponsored by AARP Innovations Labs. She spoke about designing for all, including age tech, universal design, living with purpose and designing beautiful products for everyone at every age.

 

COMPANIES ON THE MOVE:

  • Jay Newton-Small, CEO of MemoryWell, is growing MemoryWell. After a successful capital raise, she’s been adding some amazing new talent to her team including Sarah Jones from Healthsense, GreatCall and Best Buy Health.

 

  • Jacquelyn Kung, CEO of Senior Care Group at Activated Insights, is working with her team to create recognition programs for senior care providers, based on their resident and family surveys. The goal is to tie the data to outcomes and impact metrics, and to use machine learning to identify patterns in those who improve to apply across a broader population of providers.

 

NEW RESEARCH:

 

 

VIDEO DISCUSSIONS:

 

 

Stay connected and engaged with our Nexus Fellows. Subscribe to our newsletter.

Nexus Fellow

Nexus Fellow Flash Bulletin – March 2021

COVID has caused dramatic disruption in our education and healthcare systems and long term care environments. We wear masks, we distance, we stay home. So what have we learned? How can we come out stronger on the other side? Despite the massive challenges and barriers to implementation, there is a strong sense of hope on the horizon.

“Out of the tragedy of COVID, there are a lot of silver linings, a lot of good things we’re learning. Let’s seize the opportunity from the crisis so we can say we learned from it, and we won’t be here a year or two from now saying that nothing is different.” Nexus Founder & Fellow, Bob Kramer

While the pandemic has had a devastating impact on the seniors housing and long-term care industry, it’s also shed a big spotlight on this industry like never before. And that has advantages. After all, how could anyone identify a problem if they aren’t looking. People are paying attention now, and if we take this opportunity and make the changes needed, the senior living and long-term care industry will vastly improve post-pandemic.

Our Nexus Fellows are front and center. They’re experts, thinkers and entrepreneurs, bringing fresh ideas and important insights to the industry at this critical time. 

What’s the latest? Here’s a Nexus Fellow Flash Bulletin:

  • Bob Kramer, Founder and Fellow of Nexus Insights joined Jocelyn Dorsey, Becky Kurtz, Elise Eplan and Deke Cateau on a panel last month for A.G. Rhodes Living Well-Virtual to discuss the stark realities of what is happening with COVID19, aging, and in the senior housing world. “What became clear in our conversation is that, despite the overwhelming challenges and difficulty in pandemic protocols and vaccine strategies, there was a sense of hope throughout.
  • Nexus Fellow Kelsey Mellard, CEO of Sitka, announced that Sitka has raised $14 million in Series A financing led by Venrock, with participation from existing investors Optum Ventures, Homebrew, First Round Capital, and Lifeforce Capital. This round of funding will enable Sitka to accelerate product development and expand growth with new and existing partners.
  • Jill Vitale-Aussem, president and CEO of Christian Living Communities, and Nexus Insights Fellow, was featured in a McKnight’s Senior Living piece on how the senior living industry needs to change. “We need meaningful purpose in our lives. We don’t need to live in a hotel. We need to belong…to continue growing and learning…I am a huge proponent of shifting our thinking of residents as customers, which really creates helplessness, and moving to a model of citizenship”
  • In an op-ed piece in The Dallas Morning News, Jacquelyn Kung, CEO of Senior Care Group at Activated Insights and a Nexus Insights Fellow, with Nexus Insights Founder and Fellow Bob Kramer and author Ed Frauenheim offered five practical solutions for “repairing and renewing the industry.”
  • In a recent interview, Jody Holtzman cited four important trends to consider as we embark on a rebuild of a broken industry. Three of them are driving a changing view of health: the expanding holistic view of health that started with a focus on social determinants; the growing list of non-traditional supplemental benefits reimbursed by CMS; and, the increasing centrality of the home as the locus of health, care, and connected living. These are tempered however by a counter-trend: the slow uptake and limited usage of new supplemental benefits.
  • In a recent article for the journal Health Affairs, Nexus Fellow David Grabowski, along with Charlene Harrington, Anne Montgomery, Dr. Terris King, Sc.D., and Mike Wasserman, discussed recommendations for changes to public policy that would “make ownership, management, and financing more transparent and accountable to improve US nursing home care.”
  • In his latest piece on the SmartLiving 360 blog, Nexus Fellow Ryan Frederick explains that while Zillow provides comprehensive information about homes to purchase or rent, it can’t answer the question of what happens when you lose electricity and water for days, as happened in Texas recently. Whether neighbors come together as a community to help each other through the crisis has a big impact on whether you’ve chosen the right place to live.
  • Sarah Thomas, CEO of Delight by Design and Nexus Fellow, was keynote speaker at the Rehab Tech Summit in February. In her speech titled, Designing the Future: Creating Your Own Path Through a Lens of Innovation, she said,  “It’s time we challenge our own views on aging. As we design products, services, spaces and communities we must design for ALL. Our designs should delight our consumers at every age. It was such a pleasure to share my professional journey that has taken me around the world changing the global perspectives on aging.”
  • Caroline Pearson recently completed a project looking at consumer experience measures for Medicare Advantage plans. The report recommendations holding plans accountable for aspects of consumer experience that are meaningful to beneficiaries and within the health plans’ control to improve. Caroline’s team at NORC continues to examine the impact of COVID-19 on older adults in seniors housing. Look for their report due out soon.
  • Dr. Bill Thomas will be featured in the 30th Annual Aging Well Conference hosted by the University of Wisconsin-Parkside Professional and Continuing Education Office on April 23 & 30. In his keynote, Dr. Thomas will deliver a multi-part interactive keynote “What if Everything we Know About Aging is Wrong?” followed by a Q&A session. In his breakout session “MAGIC:  Exploring Intergenerational Communities,” Dr. Thomas will share new concepts in Multi-Ability, Multi-Generational, Inclusive Communities that brings together people of different ages, abilities, and backgrounds.

Stay connected and engaged with our Nexus Fellows. Subscribe to our newsletter.