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 The Spectrum of Family
Caregiving for Adults and
Elders with Chronic Illness

EDITED BY LOUIS D. BURGIO

JOSEPH E. GAUGLER

AND

MICHELLE M. HILGEMAN

1
1
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 CONTENTS

Preface vii
About the Editors xi
Contributors xiii

1. Caregiving for Family Members with Chronic Illness 1

Louis D. Burgio and Joseph E. Gaugler
2. Caregiving for Individuals with Alzheimer’s Disease
and Related Disorders 15
Joseph E. Gaugler and Louis D. Burgio
3. Family Caregivers of Stroke Survivors 58
Julia M. P. Poritz, Timothy R. Elliott, and Klaus Pfeiffer
4. Caregiving for Patients with Cancer 86
Barbara A. Given and Charles W. Given
5. HIV/AIDS Caregiving 118
Helen M. Land and Brooklyn Levine
6. Caring for Individuals Near the End of Life 142
Rebecca S. Allen, Hyunjin Noh, Lisa N. Beck, and Laura Jane Smith
7. Caregiving for Individuals with Serious Mental Illness: A Life
Cycle Perspective 173
Helle Thorning and Lisa Dixon
8. Caring for Individuals with Chronic Musculoskeletal Pain 212
Catherine Riffin, Cary Reid, and Karl Pillemer
9. Heart Failure and Debilitating Cardiovascular Problems 234
Susan J. Pressler, Miyeon Jung, and James Friedman
10. Caregiving for the Chronically Ill: State of the Science
and Future Directions 258
Louis D. Burgio and Joseph E. Gaugler

Additional Resources on Caregiving and Interventions 279

Author Index 283
Subject Index 303
 PREFACE

While a member of the faculty at the University of Michigan, Ann Arbor, one
of the coeditors (LDB) formed and chaired an interdisciplinary study group for
faculty and students who shared an interest in dementia caregiving. The purpose
of the group was to share ideas and information, facilitate research, and gener-
ate scholarly papers. Primarily as a result of the chair’s research interests, the
emphasis of the meetings was on interventions to ease the stress and burden of
providing care. Attendance at these meetings began with a core of four to five
dedicated faculty members. However, as word spread gradually across campus
about the existence of the study group, attendance increased markedly, and the
professional interests of the new members was noteworthy.
The first wave of new members, primarily nurses and social workers, were
clinicians. As one would expect from demographic trends, these clinicians were
encountering an ever-growing number of family caregivers seeking assistance
in providing care to their loved ones. These clinicians attended the meetings to
learn how to serve their caregiver clients better. Specifically, they sought infor-
mation on how to help their clients become better caregivers and how to help
them manage the stress and burden often associated with providing care. Also,
a few of the clinicians had devised their own strategies for intervention. Most of
these efforts were creative and potentially effective. Thus, their participation in
the group was beneficial to both researchers and other clinicians.
The identity of the next wave of attendees came as a bit of a surprise.
Our dementia caregiving study group began to draw attendance from fac-
ulty and students studying other types of chronic illnesses: cancer, stroke,
HIV/AIDS, severe mental illness, musculoskeletal disorders associated with pain,
and patients with multiple chronic illnesses who required palliative care. Thanks
to a small grant from the Pfizer Medical Education Group (no. 025512), we were
able to expand the scope of the study group to accommodate these researchers.
Consequently, we changed the name of our study group to the Caregiving for
Chronic Illnesses Workgroup.
This combination of researchers and clinicians discussing the needs of patients
with various chronic illnesses became fertile ground for many scholarly efforts.
viii P R E F A C E

This volume is one outcome of these efforts. It became clear that some chronic
illnesses (e.g., dementia, stroke, and cancer) had a sizable amount of research lit-
eratures on both caregivers and caregiver interventions. Other illnesses requir-
ing chronic care had active caregiver research agendas, but the research literature
was less extant (e.g., for palliative care/end-of-life care, caring for adult children
with severe mental illness). As a result of improvements in medical treatments
and the consequent increase in patient survival, some chronic illnesses identi-
fied caregiving as an area of emerging interest (e.g., severe cardiovascular condi-
tions); however, relatively few papers focusing on caregiving had been published
in these areas.
As the expanded workgroup began discussing various topics, it appeared
as if caregiving researchers across various chronic illnesses were working
from within isolated “academic silos.” The majority of workgroup members
were unaware of the vast literature on both the caregiving role and caregiver
interventions available in some areas of chronic care. Moreover, reviews of
the areas with extensive caregiving literature seemed to suggest that exist-
ing studies seldom referenced caregiving research done in other areas of
chronic care.
Workgroup members discussed topics such as the similarities and differ-
ences in patients with different chronic illnesses and the resulting demands
placed on their caregivers. We discovered that, although some empiri-
cal research was available that compared caregiving needs across different
chronic illnesses (see Chapter 10), the number of available published papers
was quite small. Last, considering the varying types of demands placed on
caregivers, questions arose regarding the applicability of existing caregiver
interventions to different chronic illnesses. Could evidence-based caregiver
interventions developed in one area of chronic care be adapted easily to other
areas? Were the demands on caregivers so different that new interventions
were needed?
The goal of this edited volume is to review research on the caregiving role
and interventions developed to assist family caregivers of older adults and
elders with different chronic conditions. The selection of chronic illnesses
included in this volume is based on our judgment that each area was sup-
ported by a sufficient caregiving database. Caregiving research has been con-
ducted in other areas of chronic illness, such as diabetes (e.g., Langa et al.,
2002), chronic obstructive pulmonary disease (Bergs, 2002), and end-stage
renal disease (Wicks, Milstead, Hathaway, & Cetingok, 1997). These and other
chronic conditions were not included because of the relatively limited number
of published documents in these areas. We also decided to limit the scope
of the volume to chronic illnesses in older adults and elders. Not included
here is the extensive body of caregiving research on children and adolescents
with chronic conditions such as intellectual disability (e.g., Hastings & Beck,
2004) and severe autism spectrum disorders (e.g., Schieve, Blumberg, Rice,
Visser, & Boyle, 2007).
P reface ix

O R G A N IZ AT I O N O F T H E VO LU M E
A N D C H A P T ER FO R M AT

There are eight disease-specific caregiving chapters in this volume (Chapters 2–9)
written by experts in these areas. The coeditors have contributed two chapters
(Chapters 1 and 10). Chapter 1 sets the stage for the disease-specific chapters,
with discussions of definitions, demographics, and theoretical models of care-
giving in chronic illness; and introduces the topic of translating research find-
ings to real-world settings. Chapter 10 is divided into three sections. In the first
two sections we summarize the state of the science on caregiving roles and care-
giver interventions. In the third section we discuss the most relevant challenges
and barriers faced by today’s caregivers and caregiver advocates. We discuss in
some detail the necessity of implementing caregiver interventions in clinics and
other community settings (i.e., the “real world”) where they are most likely to
affect the lives of caregivers and care recipients. We conclude the chapter with a
peek into the future of caregiving for the chronically ill, discuss emerging issues,
and offer some suggestions for addressing the pressing challenges to come.
The authors of the disease-specific chapters were asked to format their chap-
ters to provide information that would be useful for both researchers and
clinicians. Most of the chapters in this volume are divided in to two discrete
sections: The Caregiving Role and Caregiver Interventions. The Caregiving Role
section includes a thorough review of the literature on the characteristics of care-
givers and care recipients, including related care needs, issues, and challenges
unique to the chronic illness discussed in the chapter. The latter section reviews
the available published literature on caregiver interventions, including descrip-
tions of the interventions and evidence of efficacy.
Because the definitions of evidence-based and evidence-informed interventions
are still under intense debate in the research community, the authors provide an
evidence table so that the reader can judge more easily the level of available evi-
dence. The tables summarize the types of interventions, study sample, racial/cul-
tural factors, study design, outcomes, and evaluative comments on study quality.
If available, authors were asked to include discussions of positive aspects of
caregiving, which was neglected historically by researchers but is now recog-
nized as a critical variable in understanding caregiving and in developing new
interventions. Also, any efforts to translate and implement interventions in com-
munity settings were to be included. Last, to increase the utility of the volume
for clinicians, each chapter includes two case studies describing common prob-
lems encountered by caregivers, along with descriptions of interventions used to
address these problems.
Our small study group was formed to provide an opportunity for like-minded
researchers to share ideas on how to provide better care for dementia caregivers.
Although we had no intention of expanding our interests beyond our initial nar-
row scope of interest, our group evolved in a way that we now see as inevitable.
Our new members provided the perspective that dementia was only one of many
x P R E F A C E

chronic illnesses. As a result of advances in medical science and demographic

trends, the number of individuals with chronic illness is increasing exponen-
tially. Each chronic illness presents family members who care for an affected
loved one with a unique set of challenges. This volume is an attempt to character-
ize the needs of individuals with different chronic illnesses and the challenges
faced by their caregivers. Most important, it provides the reader—both clini-
cians and researchers—with an array of evidence-based interventions developed
to reduce caregiver stress and burden, and to help caregivers become more effec-
tive in their role.
—Louis D. Burgio

R EFER EN C ES

Bergs, D. (2002). The hidden client: Women caring for husbands with COPD: Their
experience of quality of life. Journal of Clinical Nursing, 11(5), 613–621.
Hastings, R. P, & Beck, A. (2004). Practitioner review: Stress intervention for parents
of children with intellectual disabilities. Journal of Child Psychology and Psychiatry,
45(8), 1338–1349.
Langa, K. M., Vijan, S., Hayward, R. A., Chernew, M. E., Blaum, C. S., Kabeto, M. U.,
et al. (2002). Informal caregiving for diabetes and diabetic complications among
elderly Americans. Journals of Gerontology: Series B Psychological Sciences and
Social Sciences, 57(3), 177–186.
Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relation-
ship between autism and parenting stress. Pediatrics, 119(S1), S114–S121.
Wicks, M. N., Milstead, E. J., Hathaway, D. K., & Cetingok, M. (1997). Family care-
givers’ burden, quality of life, and health following patients’ renal transplantation.
American Nephrology Nurses’ Association, 24(5), 527–528, 531–538.
 ABOUT THE EDITORS

Louis D. Burgio, PhD, is founder and director of Burgio Geriatric

Consulting. During a career that spans more than three decades, Dr. Burgio
has held several full-time academic leadership positions. Most recently he
was the Harold R. Johnson Endowed Chair of Gerontology in the School
of Social Work, University of Michigan. Prior to that, he was University
Distinguished Professor and Founding Director of The Center for Mental
Health and Aging, University of Alabama. His research, which appears in
more than 175 peer-reviewed publications, has focused on the development
of social–behavioral interventions to improve the quality of care and qual-
ity of life of patients with dementia and their caregivers. In recognition of
the impact of his research in the field of applied gerontology, Dr. Burgio was
awarded the M. Powell Lawton Awards from both the Gerontological Society
of America (GSA) and the American Psychological Association (APA), the
Rosalynn Carter Institute Award for Excellence in Caregiving Research, and
the Outstanding Research Award, Psychologists in Long-Term Care, also from
the APA. Dr. Burgio has been the Principle Investigator on numerous research
grants awarded by the National Institutes of Health (NIH). He has served
on several national advisory committees, including the National Advisory
Council of the National Institute for Nursing Research (NIH), and has served
on 11 journal editorial boards.

Joseph E. Gaugler, PhD, is a Professor in the School of Nursing and Center

on Aging at the University of Minnesota. Dr. Gaugler’s research examines
the sources and effectiveness of long-term care for chronically disabled older
adults. A developmental psychologist with an interdisciplinary research focus,
Dr. Gaugler’s interests include Alzheimer’s disease and long-term care, the lon-
gitudinal ramifications of family care for disabled adults, and the effectiveness of
community-based and psychosocial services for chronically ill adults and their
caregiving families. Underpinning these substantive areas, Dr. Gaugler also has
interests in longitudinal and mixed methods.
Dr. Gaugler currently serves as Editor-in-Chief for the Journal of Applied
Gerontology and on the editorial boards of Journals of Gerontology: Psychological
xii ABOUT THE EDITORS

Sciences, Journals of Gerontology: Social Sciences, and Psychology and Aging.

He was awarded the 2003 Springer Early Career Achievement Award in Adult
Development and Aging Research, the 2011 M. Powell Lawton Distinguished
Contribution Award for Applied Gerontology from the APA (Division 20: Adult
Development and Aging), and 2011 Dean’s Award from the University of
Minnesota School of Nursing. He is a Fellow of the Gerontological Society of
America and the APA, and the 2016 Gordon Streib Distinguished Academic
Gerontologist Award from the Southern Gerontological Society.

Michelle M. Hilgeman, PhD, is a licensed Clinical Research Psychologist in the

Research & Development Service at the Tuscaloosa Veterans Affairs (VA) Medical
Center. Dr. Hilgeman is an Adjunct Professor in the University of Alabama’s
Department of Psychology and the University of Alabama at Birmingham’s
Department of Medicine; she is also a Faculty Affiliate of the Alabama Research
Institute on Aging, and an Investigator at the Tuscaloosa Research Education
and Advancement Corporation. Dr. Hilgeman’s clinical and research interests
are in geriatric mental health, including the behavioral and psychological symp-
toms of dementia, enhancement of quality of life for those with chronic physi-
cal or mental illnesses, medical decision making and advance care planning,
and family caregiving. Dr. Hilgeman established a Telephone-Assisted Dementia
Outreach clinic in 2012 with support from the VA Office of Rural Health. This
clinical demonstration provides evidence-based interventions to rural veterans
with dementia and their family caregivers. Her other current work on opti-
mizing the delivery of family interventions in dementia and the assessment of
pain in dementia is funded by the VA Rehabilitation Research & Development
Service and the VA Health Services Research & Development Service, respec-
tively. Dr. Hilgeman has been published in numerous scientific journals and was
recognized with a New Investigator Award in 2012. This award was renewed
in 2015. She is a member of the Gerontological Society of America, the APA,
and the American Telemedicine Association. She also serves as the Continuing
Education Committee Chair for the Society for Clinical Geropsychology (APA
Division 12, Section 2).
 CONTRIBUTORS

Rebecca S. Allen, PhD Charles W. Given, PhD

Alabama Research Institute on Aging Research Institute for Health
The University of Alabama Care Studies
Department of Family Medicine
Lisa N. Beck, MS
College of Human Medicine
Department of Psychology
Michigan State University
The University of Alabama
Michelle M. Hilgeman, PhD
Louis D. Burgio, PhD
Research & Development Service
Burgio Geriatric Consulting
Tuscaloosa Veterans Affairs
Department of Psychology, University
Medical Center
of Alabama
Department of Psychology, Western Miyeon Jung, PhD, MSN, RN
Michigan University School of Nursing
University of Michigan
Lisa Dixon, MD, MPH
Columbia University Medical Center Helen M. Land, PhD, MSW
Center for Practice Innovations School of Social Work
New York State Psychiatric Institute University of Southern California
Timothy R. Elliott, PhD, ABPP Brooklyn Levine, PhD, MSW
Department of Educational School of Social Work
Psychology University of Southern California
Texas A&M University
Hyunjin Noh, PhD
James Friedman, RN, PHN, CHPN School of Social Work
School of Nursing The University of Alabama
University of Minnesota-Twin Cities
Klaus Pfeiffer
Joseph E. Gaugler, PhD Robert-Bosch-Hospital
Center for Aging, School of Nursing Stuttgart, Germany
University of Minnesota
Karl Pillemer, PhD
Barbara A. Given, PhD, RN, FAAN Departments of Human Development
College of Nursing and Human Ecology
Michigan State University Cornell University
xiv C O N T R I B U T O R S

Julia M. P. Poritz Catherine Riffin, MA

Department of Educational Department of Human Development
Psychology Cornell University
Texas A&M University
Laura Jane Smith, BS
Susan J. Pressler, PhD, RN, Department of Psychology
FAAN, FAHA The University of Alabama
Department of Acute, Critical, and
Helle Thorning, PhD, LCSW
Long-term Care
Center for Practice Innovations
University of Michigan School of
Columbia University
Nursing
Division of Mental Health Services
Cary Reid, MD, PhD and Policy Research
Division of Geriatric Medicine New York State Psychiatric Institute
Weill Cornell Medical College
 The Spectrum of Family Caregiving
for Adults and Elders with Chronic Illness
 1

Caregiving for Family Members

with Chronic Illness
LOUIS D. BURGIO AND JOSEPH E. GAUGLER ■

At the turn of the 20th century, the major causes of death and disease were
acute conditions such as tuberculosis, diarrhea, and similar transmitted dis-
eases. Today, deaths from infectious diseases have been far surpassed by chronic
illnesses such as heart disease and stroke, cancer, and Alzheimer’s disease
(National Association of Chronic Disease, 2011). However, deaths alone do not
convey the full impact of chronic disease. By definition, chronic illnesses that
affect older adults and elders are manageable but not curable. Often, these condi-
tions can span several decades, with the patient becoming increasingly debili-
tated throughout the course of the disease. Although American taxpayers and
businesses experience a significant economic impact, the family members caring
for these patients bear the brunt of emotional, physical, and economic burdens
associated with giving care.
A sampling of data from recent reports provides some perspective on the
enormity of the problem (e.g., Federal Interagency Forum on Aging-Related
Statistics, 2012; National Association of Chronic Disease, 2011; Thies, Bleiler, &
Alzheimer’s Association, 2013):

• More than 133 million Americans live with at least one chronic
condition.
• An estimated 5.2 million Americans have Alzheimer’s disease.
• Chronic musculoskeletal conditions, including arthritis, are the number
one cause of disability, affecting nearly one of every three adults.
• Stroke has left 1 million Americans with disabilities; many can no
longer perform daily tasks, such as walking or bathing, without help.
• A total of 18.9%, or 43.5 million, Americans care for someone 50 years
of age or older.