Voices of Long-Term Care Workers

Front matter

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.

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

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

56 73 94 vi CONTENTS

Conclusion. Lessons Learned and Applications as We Look to the Future 165

References 176 Index 187 ee oo oo OOOO OOOO @

ILLUSTRATIONS

Illustrations

1.1.

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2:2.

2.3.

Sel.

4.1.

4.2. 4.3.

4.4.

4.5.

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

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

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

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

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

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

What's Working Now PowerPoint slide.

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

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.

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.

75 76 viii ILLUSTRATIONS

9.1. Faces of Caring signs made by director of nursing (PowerPoint

slide 106). Photo credit: Attic Angel Assisted Living and

Memory Care. 171 Figures 0.1. Timeline of Early Response to COVID-19 in North Carolina. 2 0.2. Proportion of Older Adults Receiving Long-Term Care at Home

in Various Countries. 7 0.3. North Carolina Department of Health and Human Services

Long-Term Care COVID-19 Actions. 12 1.1. Timeline of Interviews Quoted in Chapter 1. 22 2.1. Timeline of Interviews Quoted in Chapter 2. 43 3.1. Timeline of Interviews Quoted in Chapter 3. 60 4.1. Timeline of Interviews Quoted in Chapter 4. 79 5.1. Timeline of Interviews Quoted in Chapter 5. 99 6.1. Timeline of Interviews Quoted in Chapter 6. 113 7.1. Timeline of Interviews Quoted in Chapter 7. 133 8.1. Timeline of US Interviews Quoted in Chapter 8. 149 Tables 1.1. Phase 1 Participants. 24 3.1. Phase 3 Participants (Home and Community-Based Providers). 64 4.1. Long-Term Residential Care Activities Professionals and Home

and Community-Based Workers Involved in Engagement. 81 5.1. Participants Who Care for People Living with Dementia. 102 6.1. Long-Term Residential Care Administrators, N=7. 116 6.2. Home and Community-Based Directors and Managers, N=16. 117 7.1. Selected Interviews Analyzed in Chapter 7. 138 7.2. We/they Senses from Selected Interviewees. 142 ee oo oO OOOO OOO d

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...

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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.

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ABBREVIATIONS

CARES CDC CCRC CMS CNA DSS IRB LPN NCDHHS NGO NIA QoL PPE RN

Coronavirus Aid, Relief, and Economic Security Act Center for Disease Control and Prevention Continuing Care Retirement Community

Center for Medicare and Medicaid Services

Certified Nursing Assistant

Department of Social Services

Institutional Review Board

licensed practical nurse

North Carolina Department of Health and Human Services Non-Governmental Organization

National Institute on Aging

Quality of Life

personal protective equipment registered nurse

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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.' 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