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Aging Families and Caregivingffirs.indd i11/21/08 10:09:40 AM
Wiley Series in Clinical GeropsychologySeries Editor, Sara Honn QuallsPsychotherapy for Depression in Older AdultsSara Honn Qualls and Bob G. Knight, Eds.Changes in Decision-Making Capacity in Older AdultsSara Honn Qualls and Michael A. Smyer, Eds.Aging Families and CaregivingSara Honn Qualls and Steven H. Zarit, Eds.Forthcoming: Grief, Bereavement, and End of Life Issues: What CliniciansNeed to KnowSara Honn Qualls and Julia Kasl-Godleyffirs.indd ii11/21/08 10:09:41 AM
Aging Families andCaregiving Edited bySara Honn QuallsSteven H. ZaritJohn Wiley & Sons, Inc.ffirs.indd iii11/21/08 10:09:41 AM
This book is printed on acid-free paper.Copyright 2009 by John Wiley & Sons, Inc. All rights reserved.Published by John Wiley & Sons, Inc., Hoboken, New Jersey.Published simultaneously in Canada.No part of this publication may be reproduced, stored in a retrieval system, or transmitted in anyform or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise,except as permitted under Section 107 or 108 of the 1976 United States Copyright Act, withouteither the prior written permission of the Publisher, or authorization through payment of theappropriate per-copy fee to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers,MA 01923, (978) 750-8400, fax (978) 646-8600, or on the Web at www.copyright.com. Requeststo the Publisher for permission should be addressed to the Permissions Department, John Wiley &Sons, Inc., 111 River Street, Hoboken, NJ 07030, (201) 748-6011, fax (201) 748-6008.Limit of Liability/Disclaimer of Warranty: While the publisher and author have used their bestefforts in preparing this book, they make no representations or warranties with respect to theaccuracy or completeness of the contents of this book and specifically disclaim any implied warrantiesof merchantability or fitness for a particular purpose. No warranty may be created or extended bysales representatives or written sales materials. The advice and strategies contained herein may notbe suitable for your situation. You should consult with a professional where appropriate. Neitherthe publisher nor author shall be liable for any loss of profit or any other commercial damages,including but not limited to special, incidental, consequential, or other damages.This publication is designed to provide accurate and authoritative information in regard to thesubject matter covered. It is sold with the understanding that the publisher is not engaged inrendering professional services. If legal, accounting, medical, psychological or any other expertassistance is required, the services of a competent professional person should be sought.Designations used by companies to distinguish their products are often claimed as trademarks. Inall instances where John Wiley & Sons, Inc. is aware of a claim, the product names appear in initialcapital or all capital letters. Readers, however, should contact the appropriate companies for morecomplete information regarding trademarks and registration.For general information on our other products and services please contact our Customer CareDepartment within the United States at (800) 762-2974, outside the United States at(317) 572-3993 or fax (317) 572-4002.Wiley also publishes its books in a variety of electronic formats. Some content that appears in printmay not be available in electronic books. For more information about Wiley products, visit ourwebsite at www.wiley.com.Library of Congress Cataloging-in-Publication Data:Aging families and caregiving / edited by Sara H. Qualls, Steven H. Zarit.p. cm.—(Wiley series in clinical geropsychology)Includes bibliographical references and index.ISBN 978-0-470-00855-3 (cloth alk. paper)1. Social work with older people. 2. Family social work. 3. Aging parents—Care.4. Adult children of aging parents. 5. Caregivers—Family relationships. I. Qualls, Sarah Honn.II. Zarit, Steven H.HV1451.A37 2009362.6–dc222008036139Printed in the United States of America.10 9 8 7 6 5 4 3 2 1ffirs.indd iv11/21/08 10:09:41 AM
ContentsContributorsviiPrefaceix1. Who Are the Aging Families?Rosemary Blieszner2. Functions Families Serve in Old AgeKaren L. Fingerman, Laura M. Miller, and Amber J. Seidel1193. The Cultural Context of Clinical Workwith Aging CaregiversMartha Crowther and Audrey Austin454. All in the Family: Providing Care to ChronicallyIll and Disabled Older AdultsMary Ann Parris Stephens and Melissa M. Franks615. Impact of Dementia Caregiving: Risks,Strains, and GrowthWeiling Liu and Dolores Gallagher-Thompson856. Assessment and Intervention with Family CaregiversJudy Zarit1137. Empirically Supported Treatment for Family CaregiversSteven H. Zarit, PhD131vftoc.indd v11/21/08 10:11:58 AM
viContents8. Caregiver Family Therapy for Conflicted FamiliesSara Honn Qualls and Tara L. Noecker9. Integrating Families into Long-Term-Care PsychologyServices: Orchestrating Cacophonies and SymphoniesMargaret P. Norrisftoc.indd vi15518910. Family Caregiving and U.S. Federal PolicyDiane L. Elmore and Ronda C. Talley20911. Family Care Planning ServicesPatti Auxier23312. Caregiver Services: Resources, Trends,and Best PracticesNancy Giunta and Andrew Scharlach24113. A Platform for Intervention and Researchon Family Communication in Elder CareMichael Williams and Clayton Lewis26914. Personal Health Records for Older Adults withChronic Conditions and Their Informal CaregiversElaine A. Blechman287Epilogue Future Directions in Family Caregiving:Clinical, Policy, and Research InitiativesSteven H. Zarit311Author Index319Subject Index32911/21/08 10:11:59 AM
ContributorsPatti AuxierHealthSouth RehabilitationHospitalColorado Springs, CODolores Gallagher-Thompson, PhDDepartment of Psychiatry andBehavioral SciencesStanford University School ofMedicineStanford, CAElaine A. Blechman, PhDDepartment of PsychologyUniversity of Colorado, BoulderBoulder, CONancy Giunta, PhDUniversity of California,BerkeleySchool of Social WelfareBerkeley, CARosemary Blieszner, PhDDepartment of HumanDevelopment and Center forGerontologyVirginia Polytechnic Institute andState UniversityBlacksburg, VAClayton Lewis, PhDColeman Institute for CognitiveDisabilitiesUniversity of Colorado,BoulderBoulder, CODiane L. Elmore, PhD, MPHAmerican PsychologicalAssociationWashington, DCWeiling Liu, PhDVeterans Affairs Palo Alto HealthCare SystemPacific Graduate School ofPsychologyPalo Alto, CAMelissa M. Franks, PhDDepartment of Child Developmentand Family StudiesPurdue UniversityWest Lafayette, INviifbetw.indd vii11/21/08 10:12:34 AM
viiiContributorsTara L. Noecker, MSDepartment of PsychologyUniversity of Colorado, ColoradoSpringsColorado Springs, COMargaret P. Norris, PhDPrivate PracticeCollege Station, TXSara Honn Qualls, PhDDepartment of PsychologyUniversity of Colorado, ColoradoSpringsColorado Springs, COAndrew Scharlach, PhDUniversity of California,BerkeleySchool of Social WelfareBerkeley, CAfbetw.indd viiiMary Ann Parris Stephens, PhDDepartment of PsychologyKent State UniversityKent, OHRonda C. Talley, PhD, MPHCenters for Disease Control andPreventionAtlanta, GAMichael Williams, PhDCaring Family, LLCLouisville, COJudy Zarit, PhDPrivate PracticeState College, PASteven H. Zarit, PhDPenn State UniversityUniversity Park, PA11/21/08 10:12:35 AM
PrefaceAGING FAMILIES AND CAREGIVINGFamilies are so important within the lives of older persons that theyoften are part of mental health assessment and treatment, whether explicitly or implicitly. Families are hidden victims of devastating diseases suchas Alzheimer’s disease (Zarit, Orr, & Zarit, 1985) and are the primarycaregiving service providers of older adults (see Chapter 4, this volume).Yet, families are so much more than caregivers to older adults. They arethe primary social network for older persons, accounting for nearly allof the confidants reported by older adults (see Chapter 1, this volume).Families receive both emotional and instrumental support from olderadults who have provided similar assistance throughout the entire lifespan of their offspring. Families give back more than they receive onlywhen parents reach very late life. In short, families of older adults arelinked in complex, reciprocally beneficial, and challenging relationshipsthat are powerful and meaningful.This book is included in Wiley’s Clinical Geropsychology seriesprecisely because families are so critical to the well-being of older adults. Thebook series parallels and grows out of an annual Clinical Geropsychologyconference held in Colorado Springs each summer (www.uccs.edu/geropsy).The conference provides advanced training to experienced mental healthproviders seeking postlicensure learning opportunities related to geriatricmental health. About midconference, the presenters built on the conference curriculum to create the content of the book you hold in your hands.The annual “author dinner” has become a highlight of the conferencebecause it offers experts in the field the opportunity to build a book thatcan guide clinicians who are relatively new to geriatric work. Essentially,the entire set of presenters engages in the same task that the cochairsfaced in structuring the conference: how to focus what is known in avery large field into the background knowledge underlying clinical skills.ixfpref.indd ix11/21/08 10:16:40 AM
xPrefaceEach year, creative perspective shifts occur as the presenters brainstorm,challenge each other, and ultimately hone in on a structure and suggestedauthors. Each presenter tackles a chapter or two, and other experts areasked to bring additional expertise to the project. What you have is aremarkable compendium created by outstanding scholars and clinicians.The structure of a book always reflects a creative process. The editorsof each book in this series could describe the unique challenges to summarizing each entire field in a way that is useful to practicing clincians.The first book on Psychotherapy for Depression in Older Adults (Qualls &Knight, 2006) took up the challenge of summarizing a vast and growing literature in a way that was practical for clinicians treating depressedolder adults with complex presentations of symptoms and in contextsthat extend far past our empirical research base. The interdisciplinarynature of a rapidly emerging new field was the challenge of the secondbook, Changes in Decision-Making Capacity in Older Adults: Assessmentand Intervention (Qualls & Smyer, 2007). The book you hold addressesyet a different challenge: building an empirically based approach to clinical work with older families despite the extremely limited base of clinicaloutcome research.Much of the foundation for clinical work with older families can befound in the family development and family caregiving literatures. Todate, few studies have examined specific methods for intervening withaging families to benefit either the older members or their families (seeChapter 7 for S. Zarit’s review of that literature). Because the beginningpoint for clinicians is to learn about how older adults age within families, the first two chapters of this book are devoted to orienting cliniciansto the family contexts of aging (Blieszner, Chapter 1) and the structuresand functions of aging families (Fingerman et al., Chapter 2). Who isincluded or implied in the term later-life family? What do families actuallydo? Without understanding this developmental background, clinical carerisks misunderstanding the immediate caring context.Caregiving is a primary context in which clinicians will encounterthe families of older adults, so three chapters review the key componentsof the caregiving literature that clinicians need to know. Crowther andAustin review effects of culture on family caregiving in Chapter 3;fpref.indd x11/21/08 10:16:40 AM
PrefacexiStephens and Franks describe families’ process of providing careto persons with chronic illness in Chapter 4; and Liu and GallagherThompson review the effects of caring for persons with dementia ontheir family members in Chapter 5. Each chapter summarizes a vast andconfusing literature, providing structure that offers clinicians a frameworkfor engaging families effectively in their practice.The second section of the book addresses clinical services for familiesengaged in care of an older person. J. Zarit provides a rich clinical introduction to assessment and intervention with caregiving families encountered in clinical practice in Chapter 6. S. Zarit reviews the empiricalresearch literature, drawing conclusions about how clinicians might usethat literature to guide their work in Chapter 7. Qualls and Noeckerdescribe a family therapy intervention designed specifically for caregiving families in Chapter 8. Finally, Norris addresses the complex issuesthat arise in working with family caregivers within long-term care residences in Chapter 9. These chapters are rich with clinical illustrations,guidance, tips for practice, and encouragement to persevere in the faceof significant clinical complexity.The next section of the book provides the background in social servicesand policy that clinicians need to know in order to practice effectivelywith older adults and their families, who almost inevitably will needmore than just mental health resources. Among the more vexing tasks ofexpanding practice to work with any new population is figuring out the“lay of the land” of services that various clients will need. The topography of geriatric social services is shaped by policy and regulation atthe federal, state, and local levels. Elmore and Tally provide a fascinating overview of federal policy issues that influence family care for olderadults and clinicians working with caregiving families in Chapter 10.Auxier provides a practical guide to the diverse array of services availablewithin most communities in Chapter 11. Giunta and Scharlach addressvariations and trends across states in the funding and structuring of socialservices in Chapter 12. The complex interplay among federal and stateregulations ultimately shape the richness and format of local services andthus are key components of the knowledge base needed by geriatricmental health providers.fpref.indd xi11/21/08 10:16:41 AM
xiiPrefaceThe final section of the book represents an emerging area of knowledgefor mental health providers—the use of technology to improve qualityof care and quality of life. Two chapters explore innovative approachesfor addressing key challenges in family caregiving that have been developed by psychologists working across the boundaries of basic scienceand business solutions. In Chapter 13, Williams and Lewis describe atechnological approach to helping elders participate in the electroniccommunication network used by family members without requiringthe elder to learn to use a computer or even a cell phone. The simplefax-type machine allows elders to submit handwritten materials, photographs, or other family artifacts that are scanned and sent to familymembers’ e-technology of choice. Williams and Lewis have developedrich behind-the-scenes support systems to facilitate communication, ifdesired by users. These are but two of a myriad of technological innovations available to promote independence among family members andelders, support care demands, and foster well-being during the elder-carephase of family life. Other solutions are highlighted by organizationssuch as the Center for Aging Services Technologies that attempt tomake technology more accessible to providers who can pass them alongto families.The first challenge addressed in Chapter 14 is managing multiple care providers, keeping good records, and advocating for coordinatedcare, which are some of the more complex challenges faced by familycaregivers. Electronic health record systems are a hot area of innovationintended to support providers in providing higher quality of care, yetpatients and families often are kept outside the official record-keepingsystem. In Chapter 14, Blechman provides an excellent orientation tothe different types of electronic records, their strengths and weaknessesfor older adults and their caregiving families, along with an introductionto a new technical solution to these challenges. She introduces characteristics of the next generation of electronic records by demonstratinghow her person-centric personal health record extends beyond archivingto support coordination of care among diverse and dispersed health,social service, and residential providers. The second challenge is keepingolder family members well-integrated into informal family communicationfpref.indd xii11/21/08 10:16:41 AM
Prefacexiiichannels that are increasingly occurring through technologies not yetembraced by most elders.Finally, S. Zarit addresses the future of family caregiving in the Epilogue.We hope you find this book challenges some of your assumptions,opens doors to new ways of practicing, and provides useful informationthat will influence your clinical practice. Regardless of the setting inwhich you provide services, or the services you provide to older adults,we hope this book helps you always think family when working with aclient or patient in clinical practice.REFERENCESQualls, S. H., & Knight, B. G. (2006). Psychotherapy for depression in older adults.New York: Wiley.Qualls, S. H., & Smyer, M. A. (2007). Changes in decision-making capacity in olderadults: Assessment and intervention. Hoboken, NJ : Wiley.Zarit, S. H., Orr, N. K., & Zarit, J. M. (1985). The hidden victims of Alzheimer’sdisease: Families under stress. New York: New York University Press.fpref.indd xiii11/21/08 10:16:41 AM
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CHAPTER Who Are the1Aging Families?Rosemary BliesznerAdults typically grow old within multigenerational families. Ties withrelatives are mostly positive experiences that supply companionship,provide numerous forms of support, and lend meaning to life. Of course,close relationships can include conflict and distress, as well. This chapteris introductory to the rest of the volume on interventions aimed at problematic aspects of late-life family ties. It sets the stage for the other discussions by focusing on the diversity of older adults’ family structures andinteractions. First is a detailed look at the definition of family for elderlypersons, including illustrations of a range of family structures. Next isinformation about different types of old-age family ties. The final sectionaddresses numerous personal, sociocultural, and historical influences onthe nature of family interactions in the later years of life.DEFINING OLDER ADULTS’ FAMILYEveryone has an intuitive idea of what the term family means; but whenpeople articulate their views, many different perspectives become apparent. For example, individuals differ on how broad and permeable theyconsider the boundaries of family to be, with some viewing family asa fairly small and fixed group and others having a more encompassing1c01.indd 111/21/08 10:17:48 AM
2Who Are the Aging Families?and even shifting perspective on who is included. Understanding whatpeople mean by family is crucial for psychologists because the definitioninfluences who is important to patients, who is involved with them asthey seek help, and who professionals consider when developing treatment and intervention plans.Traditionally, anthropologists and sociologists used the term family todenote the nuclear family unit, composed of married partners and theirchildren and situated within the larger kinship network (i.e., the groupof all other relatives) (Adams, 1968). Another term for nuclear family isfamily of procreation, used to distinguish the married partners in each newnuclear family from their family of origin, comprising their parents andsiblings. One problem with this traditional conception of family and itsapplication in social sci
ffirs.indd ii 11/21/08 10:09:41 AM. Aging Families and Caregiving Edited by Sara Honn Qualls Steven H. Zarit John Wiley & Sons, Inc. . fbetw.indd viii 11/21/08 10:12:35 AM. ix Preface AGING FAMILIES AND CAREGIVING Families are so important within the lives of older persons that they
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