Voices of Long-Term Care Workers: Elder Care in the Time of COVID-19 and Beyond

Voices of Long-Term Care Workers

Life Course, Culture and Aging: Global Transformations

General Editor: Jay Sokolovsky, University of South Florida St. Petersburg

Published by Berghahn Books under the auspices of the Association for Anthropology and Gerontology (AAGE) and the American Anthropological Association Interest Group on Aging and the Life Course.

The consequences of aging will influence most areas of contemporary life around the globe: the makeup of households and communities; systems of care; generational exchange and kinship; the cultural construction of the life cycle; symbolic representations of midlife, elderhood and old age; and attitudes toward health, disability and life’s end. This series will publish monographs and collected works that examine these widespread transformations with a perspective on the entire life course as well as mid/late adulthood, engaging a cross-cultural framework. It will explore the role of older adults in changing cultural spaces and how this evolves in our rapidly globalizing planet.

Volume 10

VOICES OF LONG-TERM CARE WORKERS

Elder Care in the Time of COVID-19 and Beyond

Andrea Freidus and Dena Shenk

Volume 9

AT HOME IN A NURSING HOME

An Ethnography of Movement and Care in Australia

Angela Rong Yang Zhang

Volume 8

COLLABORATIVE HAPPINESS

Building the Good Life in Urban Cohousing Communities

Catherine Kingfisher

Volume 7

PREVENTING DEMENTIA?

Critical Perspectives on a New Paradigm of Preparing for Old Age

Edited by Annette Leibing and Silke Schicktanz

Volume 6

BEYOND FILIAL PIETY

Rethinking Aging and Caregiving in Contemporary East Asian Societies

Edited by Jeanne Shea, Katrina Moore, and Hong Zhang

Volume 5

THE GLOBAL AGE-FRIENDLY COMMUNITY MOVEMENT

A Critical Appraisal

Edited by Philip B. Stafford

Volume 4

CARE ACROSS DISTANCE

Ethnographic Explorations of Aging and Migration

Edited by Azra Hromadžić and Monika Palmberger

Volume 3

AGING AND THE DIGITAL LIFE COURSE

Edited by David Prendergast and Chiara Garattini

Volume 2

UNFORGOTTEN

Love and the Culture of Dementia Care in India

Bianca Brijnath

Volume 1

TRANSITIONS AND TRANSFORMATIONS

Cultural Perspectives on Aging and the Life Course

Edited by Caitrin Lynch and Jason Danely

VOICES OF LONG-TERM CARE WORKERS

Elder Care in the Time of COVID-19 and Beyond

Andrea Freidus and Dena Shenk

First published in 2024 by

Berghahn Books

www.berghahnbooks.com

© 2024 Andrea Freidus and Dena Shenk

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Library of Congress Cataloging in Publication Control Number: 2023948701

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ISBN 978-1-80539-192-0 hardback

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ISBN 978-1-80539-235-4 web pdf

https://doi.org/10.3167/9781805391920

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CONTENTS

List of Illustrations

Preface

Acknowledgments

List of Abbreviations

Introduction. We’re Building the Plane While We’re Flying It: A Case Study of Long-Term Care Workers during COVID-19 in North Carolina

1. Perspectives of Regional Area Agency on Aging Staff and Long-Term Care Advocates: A Rapid Qualitative Appraisal

2. Challenges in Providing Care in Residential Long-Term Care Communities: It Spread Like Wildfire

3. Home and Community-Based Programming during COVID-19: Finding Resilience in Crisis

4. Activities and Engagement: Avoiding Isolation and Loneliness

5. Caring for People with Dementia during COVID-19

Dena Shenk, Andrea Freidus, and Christin Wolf

6. The Perspectives of Administrators and Managers: Providing Long-Term Care Throughout the Pandemic

7. A Linguistic Analysis: Roles and Professional Identities in Defining Reality

Boyd Davis and Christin Wolf

8. Caring for Older Adults in Residential Long-Term Care during COVID-19 in the United States and Switzerland: Balancing Protection and Social Isolation

Andrea Freidus, Dena Shenk, Megan Davies, Christin Wolf, and Sandra Staudacher

Conclusion. Lessons Learned and Applications as We Look to the Future

References

Index

ILLUSTRATIONS

Illustrations

1.1. Resident holding her animatronic pet. Photo credit: Sara Maloney, Centralina Area Agency on Aging.

2.1. Staff appreciation signs made by volunteers (PowerPoint slide 99). Photo credit: Attic Angel Assisted Living and Memory Care.

2.2. Porch visit through plexiglass (PowerPoint slide 88). Photo credit: Attic Angel Assisted Living and Memory Care.

2.3. One-on-one activity in resident’s room (PowerPoint slide 11). Photo credit: Attic Angel Assisted Living and Memory Care.

3.1. Safe distancing during the pandemic. Photo credit: Michele D. Allgood, program director of Gracious Living Adult Day and Health Care Center Corporation.

4.1. Staff member serving cupcakes door to door (PowerPoint slide 61). Photo credit: Attic Angel Assisted Living and Memory Care.

4.2. What’s Working Now PowerPoint slide.

4.3. Staff member and alpacas visiting residents through window (PowerPoint slide 87). Photo credit: Attic Angel Assisted Living and Memory Care.

4.4. Program participants involved in planting outside with a staff member. Photo credit: Michele D. Allgood, program director of Gracious Living Adult Day and Health Care Center Corporation.

4.5. Sensory activity with physical distancing and plexiglass divider. Photo credit: Michele D. Allgood, program director of Gracious Living Adult Day and Health Care Center Corporation.

9.1. Faces of Caring signs made by director of nursing (PowerPoint slide 106). Photo credit: Attic Angel Assisted Living and Memory Care.

Figures

0.1. Timeline of Early Response to COVID-19 in North Carolina.

0.2. Proportion of Older Adults Receiving Long-Term Care at Home in Various Countries.

0.3. North Carolina Department of Health and Human Services Long-Term Care COVID-19 Actions.

1.1. Timeline of Interviews Quoted in Chapter 1.

2.1. Timeline of Interviews Quoted in Chapter 2.

3.1. Timeline of Interviews Quoted in Chapter 3.

4.1. Timeline of Interviews Quoted in Chapter 4.

5.1. Timeline of Interviews Quoted in Chapter 5.

6.1. Timeline of Interviews Quoted in Chapter 6.

7.1. Timeline of Interviews Quoted in Chapter 7.

8.1. Timeline of US Interviews Quoted in Chapter 8.

Tables

1.1. Phase 1 Participants.

3.1. Phase 3 Participants (Home and Community-Based Providers).

4.1. Long-Term Residential Care Activities Professionals and Home and Community-Based Workers Involved in Engagement.

5.1. Participants Who Care for People Living with Dementia.

6.1. Long-Term Residential Care Administrators, N=7.

6.2. Home and Community-Based Directors and Managers, N=16.

7.1. Selected Interviews Analyzed in Chapter 7.

7.2. We/they Senses from Selected Interviewees.

PREFACE

A FEW WEEKS INTO THE lockdown in April 2020, Andrea, Dena, and Christin agreed among ourselves to carry out a rapid qualitative assessment of the impact of the COVID-19 pandemic on the care providers of older adults in need of long-term care in central North Carolina. Andrea was then living in Florida and Dena and Christin in North Carolina (although we didn’t meet in person for many months and then only once—outdoors). The entire process of developing the project, scheduling and completing interviews, coding, analysis, writing, presenting papers and webinars, and writing this book have been completed virtually. That in itself is a testament to the pandemic and demonstrates one of the few and clearest positives to come from this disaster. The flexibility, determination, and resilience demonstrated by the long-term care providers who shared their narratives, as well as the creative use of technology, have made this book possible. And so, we begin . . .

ACKNOWLEDGMENTS

WE WANT TO BEGIN BY thanking all of our research participants for being so generous and sharing so openly and honestly during a period of uncertainty, chaos, and exhaustion. We also want to thank Christin Wolf, an essential component of this research team, for her dedication and hard work throughout this endeavor. We supervised two undergraduate gerontology minors, who in Spring 2020, assisted with organization and analysis of policy and guidelines as well as news media focused on care for older Americans during the pandemic. William Bell created drafts of the policy infographic that appears as figure 0.3 in the introduction. We thank James Robbins for his help with editing and formatting. Finally, we are especially grateful to the two anonymous reviewers who gave invaluable feedback to strengthen this work and make it accessible to anyone interested in these issues and the voices of these dedicated workers. We each want to thank our family who got us through the pandemic and supported us in this project.

ABBREVIATIONS

INTRODUCTION

WE’RE BUILDING THE PLANE WHILE WE’RE FLYING IT:

A Case Study of Long-Term Care Workers during COVID-19 in North Carolina

GRACE IS A CHAPLAIN AT a continuing care retirement community in central North Carolina who we interviewed in August 2020.¹ She described her personal and professional experiences related to providing care for older adults since the COVID-19 pandemic erupted in the United States the previous March. She framed the multiple impacts on workers caring for older adults in a long-term residential care community as well as the residents, professional staff, and families; she also alluded to the effects of the pandemic on community-based programs. She described her experiences in great detail:

We got word on the 9th of March that we would not be able to host any memorial services on our campuses for the foreseeable future, because they [the administration] wanted to stop any large groups of outside people coming on campus. . . . And so we got told that week, Hey, you’re not gonna be able to have those services here on campus, and then on that same day, they said also, We don’t want you to go into the hospital right now. We feel like chaplains could be a super-spreader on our campuses, if you’re going to the hospitals and coming back. . . .

Every day there was something new: We’re gonna do this now. Now, we’re doing this. We’re gonna close this gate down. We’re all gonna go through the front gate. We are all going to get our temperature [checked]. For those two weeks, it just changed. I read a quote in the [local newspaper] that said, This time is like we’re building the plane while we’re flying it.

I’m married and my senior adult mom lives with my husband and me. And so when we get home. . . we’re her caregiver. She’s not like somebody who’s home cooking dinner for me when I get home. I have to take care of her. And my husband’s really had to step up what he does because he’s working from home. And we’re not sending her to her day program. So my coworker and I both have not quiet homes where we just go and hibernate, but we have a lot of demands in our own homes, and so we’re not just stressed at work, we’re stressed at home too. But at the same time, we wanna show up and be there for our staff, and it’s been weird just figuring out how to do that during this time. . . . I think our most important job is building relationships with people so that when the hard times come, we already have that foundation of a relationship. (P38)

Figure 0.1. Timeline of Early Response to COVID-19 in North Carolina.

Grace is one of seventy-six care providers we interviewed as the COVID-19 pandemic evolved. In her interview, she demonstrates the importance and challenges of communication, the need for a flexible human infrastructure, and the resilience and creativity of staff who care for older Americans. These are key themes we will see throughout this book. In the following interview excerpt, she explains her personal challenges early in the pandemic:

I didn’t sleep well that first month, maybe six weeks. I did not sleep well at all, because every night I would lay in bed and think, Oh my gosh, have I brought this virus home to my mom? ’Cause my husband’s working from home, and my mom was at home, and we did have some caregivers coming into the house, but it was me that was out among the people. . . . And here’s the truth, my mother-in-law died in July [2020] with the virus, and she was in a facility. She was end-stage dementia, and she was in a facility, and she contracted it through an employee who didn’t know they had it, but they were doing routine testing. And so then they tested all the residents on her wing, and five of them tested positive, including my mother-in-law. And the other four were immediately sick and she wasn’t. And she got to about day twelve of having been tested positive and all of a sudden she started developing symptoms. . . . And it was just in a few days, she was gone. And so it has impacted my family that way too. So I carry that with me. . . . But early on, I was so worried about bringing it home to my mom. And actually, we all did get exposed to the virus in my house through one of my mom’s caregivers. . . . She didn’t know that she had it. . . . She tested positive a few days afterwards. None of us actually got it, but none of us tested positive, I’ll put it that way. (P38)

She talked about the impact of the lockdown on residents:

I feel like the isolation from their families is just really a key thing. I have talked to one resident who’s just despondent, and it isn’t just the isolation from her family, she’s nearly a hundred, and she’s had some health issues this year. And she’s feeling a little bit of [an] existential crisis. . . And sad, I feel the sadness, not only of the people that we’ve lost and I didn’t get to visit them, but it’s just the not being together on this.

She went on to discuss the resiliency required of the staff:

We’re not wired for all of the information, okay, that I get just in my phone and Facebook, you know? The amount of empathy and rage and all of that, we’re just not wired just to know everything all the time. We just can’t manage that. . . . And so it’s just like, like you said, the perfect storm of just so much angst and so much unknown, and it’s really hard. . . . You make a decision and it’s the right thing, and then you make the decision and it’s the wrong thing. And it’s just been building the plane while you’re flying it.

The Canary in the Nursing Home

In March 2020 alarm bells were raised when the virus swept rapidly through a nursing home in Kirkland, Washington. That outbreak infected eighty-one residents and took the lives of thirty-five people, including both residents and staff. The impact continued to differentially impact older Americans, especially those in residential care communities, with over 60 percent of reported mortality occurring in Americans sixty-five and older in North Carolina, the site of our research. In response to the Centers for Disease Control and Prevention (CDC) guidelines, governors across the country scrambled to shutter long-term residential care sites and initiate emergency infection disease control measures. At this time, we were invited by an international working group to conduct a mirror study on the impact COVID-19 was having on frontline workers in caring for patients with COVID-19 (Vindrola-Padros and Johnson 2022). We expanded their focus to study those caring for older adults in both long-term residential care and community-based programs.

Long-term residential care residents have been the most affected by COVID-19 in many countries, representing as many as half of all deaths for COVID-19 in a number of European countries, over three-quarters in Canada, and around 40 percent in the United States, according to some of the latest available data sources (Badone 2021; Inzitari et al. 2020). Despite heterogeneity in policies, responsibilities, and funding for long-term care in various countries and locations (Picard 2021; Spasova et al. 2018), long-term residential care communities share many common threads in infrastructure, organization, and workforce (McMichael et al. 2020). This includes low staff-to-resident ratios; low-paid staff; low skill-mix; and high staff turnover, creating environments with minimal resilience to adverse events (Inzitari et al. 2020).

The pandemic generated unprecedented awareness of the value and precarity of the long-term care system and its workforce (Scales 2021). The marginalized status of direct care workers was revealed through reports about their inadequate access to personal protective equipment (PPE), relevant training, paid sick leave, and other supports (Lyons 2020). Long-term care providers struggled to maintain services without enough workers, highlighting the shortages of direct care staff (Almendrala 2020). It became impossible to overlook direct care workers’ essential role in providing care in places for those most at risk from the disease (Scales 2021). In an effort to capture the voices of and experiences of the workers, we began our research in May 2020, and our methods will be discussed below.

Effective communication, among all levels of staff, with residents/clients, and families emerged as a central element in understanding the experiences of those providing care for older adults during the pandemic. Other crucial issues include balancing social isolation and protection, flexibility, and access to and effective use of technology. The pandemic highlighted long-standing issues related to human infrastructure—including retention, turnover, the need for adequate pay with benefits, and lack of career pathways—but also illuminated the resilience and dedication of the caregivers. These themes are discussed throughout the following chapters.

We continued to talk with long-term care staff as the pandemic continued, and a year later, in August 2021, we received the following update from Grace:

It has certainly been a year, hasn’t it?? In our community, we did have a couple of outbreaks of the virus that were quite tough and because of that, it was an incredibly hard time. In the winter, we were able to get a large majority of our residents vaccinated, and that was amazing. One-on-one indoor visitation began to return to skilled and assisted living areas in the spring of this year [based on federal guidelines], and it was so good to see family members return to those areas. Of course, that has had temporary suspension with any virus issues in those areas, but that has not been a super common occurrence since the spring. . . . And since the beginning of April [2021], my co-chaplain and I have been able to lead in-person services each Sunday. . . . The one thing we have not been able to resume is hospital visitation since visitor restrictions are still in place at most hospitals. It feels good to have returned to some sense of normalcy, but I do believe we will be dealing with the emotional fall-out of the pandemic for years to come. The recent development [of the Delta variant] has brought back some anxiety to our campus, and we will see how that unfolds.

For me, personally, it has been one of the hardest periods of my life. As you may remember, my husband and I were caregivers to my mother who lived in our home with us. That added a different dimension of stress to our Covid life. She died in December after a bout with aspiration pneumonia, and we had a virtual memorial service for her just after Christmas. . . . I returned to my therapist in January, the same person who helped me navigate my grief after my father’s death four and a half years ago, and I am grateful for that. The last year and a half have been difficult both personally and professionally, and I have become very intentional about my self-care! (P38)

Long-Term Care in the United States

Long-term care is most effectively viewed as a continuum based on the needs and personal situation of the recipient. Ideally, a person would choose from a range of alternatives, including residential and home or community-based programs. In the US, however, long-term care for older adults was originally developed based on a medical model following the medicalization of everyday life and institutional care. As a result, most care is provided in institutional or congregate residential environments (see McLean 2007 for a history of the development of institutional care and nursing homes in the US). It is well established that medicine has become a powerful institution of social control able to determine as well as direct cultural and social values (Zola 1972). An effective way of exerting this control is by applying medicine, health, and illness concepts and approaches to ever-expanding ranges of daily living activities, processes, and states of being including aging and disability (Zola 2009). Aging Americans have historically been defined and managed by their physical and biological needs and limitations. As a result, models of care for this population have focused almost exclusively on the physical self and quantity of life, with less attention paid to the whole self, overall quality of life, variations within the population, or quality of care, broadly defined (Wolf-Meyer 2020). Elder care in the US is fragmented and relies on different streams of government funding and rules and regulations vary between states (Coe 2019). Medicare and Medicaid, the major forms of public financing for elder care, were developed over fifty years ago. Healthcare experts consider them to be too focused on acute care rather than the management of the chronic conditions and disabilities that beset older adults today (Institute of Medicine 2008). Moreover, the system has focused predominantly on congregate residential alternatives.

Since the early 1960s, but gaining substantive traction in the 1980s and 1990s, multiple models have been developed to implement culture change and person-centered care of older adults in residential long-term care communities to address