Clinical Sociology: Research and Practice

Series Editor:

JOHN G. BRUHNNew Mexico State University, Las Cruces,

New Mexico

This series explores key research and practice in this rapidly expanding field. Topics include ethical and legal aspects; the nature of client relationships; methods of intervention and evaluation; and the role of clinical sociology in specific settings. This open-ended series appeals to students and teachers in sociology, social work, community psychology, public health, health education, and counseling.

For further volumes: http://www.springer.com/series/5805

John G. Bruhn • Howard M. Rebach

The Sociology of Caregiving

1 3

ISSN 1566-7847ISBN 978-94-017-8856-4 ISBN 978-94-017-8857-1 (eBook)DOI 10.1007/978-94-017-8857-1Springer Dordrecht Heidelberg New York London

Library of Congress Control Number: 2014936058

© Springer Science+Business Media Dordrecht 2014This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. Exempted from this legal reservation are brief excerpts in connection with reviews or scholarly analysis or material supplied specifically for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Duplication of this publication or parts thereof is permitted only under the provisions of the Copyright Law of the Publisher’s location, in its current version, and permission for use must always be obtained from Springer. Permissions for use may be obtained through RightsLink at the Copyright Clearance Center. Violations are liable to prosecution under the respective Copyright Law.The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.While the advice and information in this book are believed to be true and accurate at the date of publication, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein.

Printed on acid-free paper

Springer is part of Springer Science+Business Media (www.springer.com)

John G. BruhnDepartment of Sociology Northern Arizona UniversityFlagstaffArizonaUSA

Howard M. RebachDepartment of SociologyUniversity of MarylandSalisburyMarylandUSA

For caregivers past, present and future-JGB

To Katherine, and to my students-HMR

“The greatest discovery of the 20th Century is that our attitude of mind determines our quality of life, not circumstances.”

William James

ix

Preface

How a society cares for its sick, disabled and elderly members reflects its values. In the United States the family, through the process of socialization, continues to mod-el caregiving roles and teach caregiving skills to its members, and instill attitudes of responsibility and obligation for the care of extended kin and non-kin. However, societal change has changed the nature of caregiving in the U.S. Changes in the de-mographics of the U.S. population and in medical technology, and a broader defini-tion of the family have created a growing need for more qualified multi-skilled and specialized caregivers, especially for seniors.

Frequently caregiving needs exceed the resources of a family, requiring manage-ment skills and resources for the care recipient that must be outsourced. Since the need for one or more caregivers in a family is often unexpected and unplanned for, family resources may be limited and prevent the provision of the level and quality of care needed. The resultant social and economic inequities may negatively impact the health and well-being of the care recipient.

Caregiving and how it is provided varies by culture. Some cultures emphasize nurturing more than others. There are cultures where there are strongly held values, beliefs and traditions of nurturing that extend throughout the lifecycle, whereas in other cultures relationships are more likely to be activated by situational need, formally structured, and contracted outside of kin networks. Changes in culture and lifestyle now give Americans more choices in how they can meet the physical and emotional needs of aging family members in lieu of, or in addition to, kin networks.

Caregiving has been acknowledged as an important national topic. It must be considered in the context of the life span with needs that vary with age, developmen-tal levels, mental health needs, and physical health demands of both caregivers and care recipients. As the nature and functions of caregiving evolve it is a critical and salient issue in the lives of individuals in all demographic, socioeconomic, and eth-nic categories. The “graying” of the baby boom generation, whose members turned 50 in 1996, have created new caregiving needs. Baby boomers are projected to live longer than any previous generation and the number of people aged 65 or older is expected to double between 2000 and 2030. Elderly people will also increase as a proportion of the population, and people aged 85 years and older will be the fastest growing segment of that group. Other dynamics within the older population suggest

x Preface

more intensive caregiving demands as well. For example, today’s increased life ex-pectancies mean that many 65 year-olds will be caring for their 90 year-old parents.

This text frames caregiving as a sociological issue focused around a number of central concerns:

• Caregiving is a life span experience associated with aging and the roles of spous-es and adult children.

• Caregiving involves a complex of social system variables that influence social support and the services offered to caregivers and care recipients.

• The nature of the relationship between family caregivers, professional caregiv-ers, and the care recipient are embedded in their interactions and dynamics in-fluenced by the internal and external variables that inhibit or facilitate the care situation.

• Caregiving needs to be integrated with a national public health agenda.• We need to identify and minimize the disparities or inequalities that exist in care-

giving in the United States.• How does caregiving fit within the Patient Protection and Affordable Care Act of

2010?

This text proposes to: (1) provide an overview of the growing complex issues of caregiving in the twenty-first century in the U.S.; (2) highlight the dynamics of caregiving that characterize high quality care; and (3) discuss the development of a new national model of healthcare with respect to caregiving policies and remaining barriers to care. Written for a graduate level audience in sociology, social work, psy-chology, anthropology, public health, gerontology and geriatrics, and public policy, some parts of the text will also appeal to lay persons in general. Our intention was to make this text a resource of information, thought, discussion, and action.

JGBHMR

xi

Acknowledgments

Caregiving is a serious and growing issue as we age and experience increasing health problems which often require assistance from others in negotiating the tasks of daily living, and in some cases complete dependency requiring institutional care. When caregiving involves us personally, especially, we look to resources to assist us. It was the lack of literature in the social and behavioral sciences with respect to caregiving that motivated us to undertake this text. We received encouragement from many colleagues, professional caregivers, and community organizations and agencies to write this book. We draw upon many of their ideas, experiences, and stories. The staff at Hospice of the Valley in Phoenix and their periodic continuing education workshops for volunteers were very helpful. One of the authors (JGB) has been a respite hospice caregiver for 10 years, and facilitated a grief support group for 4 years, and served as a hospital chaplain for 9 years. Both of us have had experience caring for several aged family members. Many of the caregivers in group homes and families of clients receiving assisted services contributed to this book by sharing their journeys about caregiving with us.

We thank Tracy Grindle for her superb work as typist and editor. Vince Colburn and Bob Rebach both provided their skills as graphic artists. The staff at the Fred-erick Douglass Library at the University of Maryland Eastern Shore Campus were generous and helpful in providing resource material for this book.

xiii

Contents

1 The Contemporary Challenges of Caregiving ......................................... 11.1 Introduction ......................................................................................... 1

1.1.1 Trends Shaping Future Caregiving .......................................... 11.1.2 Caregiving Defined .................................................................. 51.1.3 Changing Families and Changing Caregiving Needs .............. 61.1.4 Formal Caregiving ................................................................... 71.1.5 Informal Caregiving ................................................................. 71.1.6 Role Theory and Caregiving .................................................... 81.1.7 Life Span Development and Intergenerational

Caregiving ................................................................................ 91.2 New and Continuing Challenges ......................................................... 111.3 Summary ............................................................................................. 111.4 Questions for Discussion ..................................................................... 12References .................................................................................................... 12

2 Social Change and Caregiving .................................................................. 152.1 Introduction ......................................................................................... 152.2 Trends in Caregiving ........................................................................... 152.3 An Aging Society and Caregiving ....................................................... 17

2.3.1 The Effects of Gender, Rights and Equality Issues on Caregiving ........................................................................... 19

2.3.2 The Household Economy Model ............................................. 202.3.3 The Male Breadwinner/Female Caregiver Model ................... 222.3.4 The Dual Breadwinner/Female Caregiver Model .................... 23

2.4 Effects of Changes in Disease Types and Lifestyles on Caregiving ...................................................................................... 25

2.5 Social Change and Risk Factors for Disease ....................................... 272.6 Implications for Caregiving ................................................................ 282.7 Summary ............................................................................................. 292.8 Questions for Discussion ..................................................................... 30References .................................................................................................... 31

xiv Contents

3 The Life Course Perspective ..................................................................... 333.1 Caregiving and the Life Course .......................................................... 413.2 Summary ............................................................................................. 423.3 Questions for Discussion ..................................................................... 44References .................................................................................................... 44

4 Caregiving Children with Special Healthcare Needs .............................. 474.1 Introduction ......................................................................................... 474.2 Estimates of Prevalence of Children with Special Needs ................... 474.3 Caregiving Concerns ........................................................................... 494.4 Finances of Caregiving Special Needs Children ................................. 534.5 Summary ............................................................................................. 584.6 Questions for Discussion ..................................................................... 58References .................................................................................................... 59

5 Caregiving Adolescents and Young Adults with Disabilities .......................................................................................... 615.1 Introduction ......................................................................................... 615.2 Service Issues ...................................................................................... 625.3 Transition to Adulthood....................................................................... 635.4 Negotiating Autonomy ........................................................................ 645.5 Transition Satisfaction ......................................................................... 665.6 Summary ............................................................................................. 675.7 Questions for Discussion ..................................................................... 68References .................................................................................................... 68

6 Caregiving at Life’s Transitions: The Senior Years ................................ 696.1 Introduction ......................................................................................... 696.2 “Normal” Aging .................................................................................. 70

6.2.1 Joann’s Longevity .................................................................... 706.2.2 Definition and the Realities of the Senior Years ...................... 71

6.3 Empowerment as a Process ................................................................. 716.4 Successful Aging ................................................................................. 73

6.4.1 Autonomy and Control ............................................................ 746.4.2 Social Support and Social Networks ....................................... 74

6.5 Insights into Long, Happy Lives: The Results of the Harvard Grant Men Study ......................................................... 75

6.6 Summary ............................................................................................. 766.7 Questions for Discussion ..................................................................... 77References .................................................................................................... 77

7 Socioeconomic Status and Caregiving...................................................... 797.1 Introduction ......................................................................................... 797.2 Socioeconomic Status and Aging ........................................................ 797.3 The Socioeconomic Context of Caregiving ........................................ 84

xvContents

7.4 Summary ........................................................................................... 937.5 Questions for Discussion ................................................................... 94References .................................................................................................. 94

8 Ethnic Variations in Caregiving ............................................................. 978.1 Introduction ....................................................................................... 97

8.1.1 Growing Ethnic Diversity ...................................................... 978.1.2 A Norm of Family Caregiving & Filial Piety ........................ 1008.1.3 Variations in the Details of Context ....................................... 1058.1.4 The Stress Process Model ...................................................... 108

8.2 Summary ........................................................................................... 1188.3 Questions for Discussion ................................................................... 119References .................................................................................................. 119

9 Outsourced and Specialized Caregiving ................................................ 1239.1 Introduction ....................................................................................... 1239.2 Caring from a Distance ..................................................................... 123

9.2.1 Long Distance Defined .......................................................... 1249.2.2 Long-Distance Caregiving ..................................................... 1249.2.3 Long-Distance Care of a Family Member with Dementia .... 125

9.3 What To Do About Aunt Mary? ........................................................ 1269.4 Level of Burden Index ...................................................................... 1319.5 Caregiving Structures: Levels of Specialized Care ........................... 132

9.5.1 Contracts ................................................................................ 1329.5.2 Levels of Specialized Care .................................................... 133

9.6 Emotional and Financial Costs of Long-term Care for Caregivers .................................................................................... 1339.6.1 Financial Costs ....................................................................... 1359.6.2 Emotional Costs ..................................................................... 135

9.7 Summary ........................................................................................... 1369.8 Questions for Discussion ................................................................... 137References .................................................................................................. 137

10 Caregiving at the End of Life .................................................................. 13910.1 Introduction ..................................................................................... 13910.2 Definitions ....................................................................................... 141

10.2.1 Palliative Care and Hospice Care ...................................... 14110.2.2 End-of-Life and End-of-Life-Care .................................... 141

10.3 Where We Die ................................................................................. 14310.4 The Trajectories of Dying ............................................................... 14410.5 Men as Caregivers ........................................................................... 145

10.5.1 Men as Caregivers at the End-of-Life ............................... 14610.6 Impact of End-of-life Care on Caregivers ....................................... 14710.7 Preventing Caregiver Burnout ......................................................... 14710.8 After Death Care for Caregivers ..................................................... 148

xvi

10.9 Summary ......................................................................................... 14910.10 Questions for Discussion ................................................................. 150References .................................................................................................. 150

11 The Health of Caregivers ......................................................................... 15311.1 Introduction ..................................................................................... 153

11.1.1 Caregiving as a Job ............................................................ 15311.1.2 Caregivers’ Coping and the Positive

and Negative Effects of Caregiving ................................... 15411.1.3 Multiple Roles ................................................................... 155

11.2 Social Support as a Moderator of Caregiving Stress ....................... 15611.3 The Roles, Dynamics, and Outcomes of Caregiving

and Receiving .................................................................................. 15711.3.1 Role Initiation .................................................................... 15811.3.2 Role Performance .............................................................. 15811.3.3 Role Outcomes .................................................................. 160

11.4 Predicting Caregiver Health Effects and Mortality ......................... 16111.4.1 Health Effects .................................................................... 16111.4.2 Mortality ............................................................................ 162

11.5 The Quality of the Caregiver-Recipient Relationship as a Predictor of Caregiver and Recipient Health ........................... 163

11.6 Summary ......................................................................................... 16411.7 Questions for Discussion ................................................................. 164References .................................................................................................. 165

12 Legal and Ethical Issues in Caregiving .................................................. 16912.1 Introduction ..................................................................................... 16912.2 Planning for Incapacity: Legal Issues of Caregiving ...................... 170

12.2.1 Decision-Making ............................................................... 17012.3 Advance Directives ......................................................................... 17112.4 Attitudes Toward and Effects of Advance Directives ..................... 17212.5 The Role and Scope of Surrogates in Advance Directives.............. 17312.6 Physician Aid-in-Dying ................................................................... 17412.7 Crucial Conversations ..................................................................... 17512.8 Elder Abuse, Neglect and Exploitation in Caregiving .................... 177

12.8.1 Definition ........................................................................... 17712.8.2 Prevalence/Incidence of Maltreatment .............................. 17712.8.3 Risk Factors vs. Protective Factors

and Elder Maltreatment ..................................................... 17812.9 Elder Maltreatment in Institutional Settings ................................... 17912.10 Summary ......................................................................................... 18112.11 Questions for Discussion ................................................................. 182References .................................................................................................. 182

Contents

xvii

13 National Caregiving Policy Initiatives.................................................... 18513.1 Introduction ..................................................................................... 185

13.1.1 Caregiving Principles and National Health Policy ............ 18613.2 National Initiatives in Caregiving ................................................... 188

13.2.1 The National Family Caregiver Support Program (NFCSP) (2000) Under the Older Americans Act Title ITTE .......................................................................... 188

13.2.2 The Affordable Care Act of 2010 (P.L. 111–148) .............. 18913.2.3 Caregivers and Veteran Omnibus Health Services

Act of 2010 (P.L. 111–163) ............................................... 19313.3 Family and Medical Leave Act of 1993 (FMLA)

(P.L. 103–3) ..................................................................................... 19413.4 Lifespan Respite Care Act of 2006 (P.L. 109–442) ........................ 19413.5 New Models of Caregiving ............................................................. 19613.6 Summary ......................................................................................... 19713.7 Questions for Discussion ................................................................. 197References .................................................................................................. 197

14 Caregivers’ Utilization of Social Networks and Social Media ...................................................................................... 20114.1 Introduction ..................................................................................... 201

14.1.1 Definitions ......................................................................... 20214.1.2 Scope of Internet Use ........................................................ 203

14.2 The Support Role of Social Networks and Social Media ............................................................................. 204

14.3 Network Disruptions: A Predictor of Caregiver Distress ....................................................................... 205

14.4 Telephone Networks ........................................................................ 20614.5 Interventions to Moderate Family Caregiver

Burden and Stress ............................................................................ 20714.6 Summary ......................................................................................... 20714.7 Questions for Discussion ................................................................. 208References .................................................................................................. 208

Index ................................................................................................................ 211

Contents

xix

List of Figures

Fig. 1.1  Projected number of people age 70+ needing care ........................... 2Fig. 1.2  Availability of caregivers in the future .............................................. 2Fig. 1.3  Women of caregiving age* and individuals 65 and over in

the United States, 2000–2030 (in millions)....................................... 3

Fig. 2.1  U.S. population 65 + by age: 1900–2050 .......................................... 18Fig. 2.2  Aggregate costs of care by payer for Americans age 65

and older with Alzheimer’s disease and other dementias 2012* ...... 19Fig. 2.3  Percentage of fathers and mothers in dual-earner couples

reporting work-family conflict (1977–2008) .................................... 24Fig. 2.4  Changes in leading causes of death ................................................... 26Fig. 2.5  Percentage of obesity (BMI > 30) in U.S. adults, 2010. ................... 26Fig. 2.6  Chronic diseases were the leading causes of death among

U.S. adults aged 65 or in 2002 .......................................................... 29Fig. 2.7  Prevalence of chronic conditions among adults aged 65

years or older varied by race/ethnicity in 2002–2003 ....................... 30

Fig. 8.1  Schematic diagram of stress process model ...................................... 111

Fig. 10.1  Medicare certified hospices by state ................................................. 142

Fig. 11.1  Caregivers are more likely than non-caregivers to have health problems ................................................................................. 154

Fig. 11.2  Key steps in decision making in the evolution of caregiving ........... 157

xxi

List of Tables

Table 1.1  Percentage of caregivers in U.S. by gender, age and race .............. 4

Table 2.1  U.S. population, by age group: 1950–2050 .................................... 17Table 2.2  Major themes of caregiving during different eras

in U.S. history ................................................................................ 20Table 2.3  Actual causes of death in the United States in 1990 and

2000 ................................................................................................ 27

Table 4.1  Health conditions considered special healthcare needs ................. 48

Table 8.1  2010 Census results; percents of population and percent change by race/ethnicity ................................................................. 98

Table 8.2  Foreign-born population by region of birth, 1970 and 2010 .......... 98Table 8.3  Percentage of older adults by race/ethnicity 2000 and 2009 .......... 99Table 8.4  Percents, basic action difficulty and complex activity

limitations by race/ethnicity, 2000 and 2012 ................................. 99Table 8.5  Degree of disability in U.S. population by race and

Hispanic origin, 2010 ..................................................................... 100Table 8.6  U.S. income, education, and poverty status by race/

ethnicity, 2010 ................................................................................ 100

Table 9.1  Caregivers by Level of Burden Index ............................................ 132Table 9.2  Levels of Specialized Care ............................................................. 134

Table 10.1  Percentage of hospice admissions by primary diagnosis in 2009 ............................................................................................ 142

Table 12.1  Risk factors and protective factors for elder maltreatment ............ 179

Table 13.1  Understanding the Patient Protection and Affordable Care Act of 2010 ............................................................................ 190

Table 14.1 Reasons online health information seekers used the internet to connect with others ....................................................... 202