Family Caregiver Distress E-Book

Dolores Gallagher-Thompson

• Herausgeber: Hogrefe Publishing
• Kategorie: Fachliteratur
• Serie: Advances in Psychotherapy - Evidence-Based Practice
• Sprache: Englisch
• Veröffentlichungsjahr: 2023

Seitenzahl: 223

Beschreibung

Get the science on helping reduce stress in family caregivers of people with dementia: Details the best tools for assessment and explores evidence-based approaches Reflects on diversity, equity, and inclusion Includes downloadable handouts Guidance for supporting family caregivers on maintaining positive mental health This is the first book that takes a "deep dive" to answer the questions that mental health providers encounter when working with family caregivers. Just what are the unique issues family caregivers face? How does this impact their mental health? What can providers do to help? Based on research and clinical experiences of the authors, this volume in our Advances in Psychotherapy series focuses on examining the specific issues that caregivers of people with Alzheimer's disease or other forms of dementia face. Practitioners learn about the best tools for assessment and which evidence-based interventions help reduce caregiver distress – including cognitive behavioral therapy, acceptance and commitment therapy, and mindfulness and multicomponent intervention programs. Resources in the appendix include a caretaker intake interview, and the book is interspersed with clinical vignettes that highlight issues of diversity, equity, and inclusion – making this is an essential text for mental health providers from a variety of disciplines including psychology, psychiatry, nursing, social work, marriage and family counseling, as well as trainees in these disciplines.

Leseprobe

Advances in Psychotherapy – Evidence-Based Practice, Volume 50

Family Caregiver Distress

Dolores Gallagher-Thompson

Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Palo Alto, CA

Ann Choryan Bilbrey

Optimal Aging Center for Training and Research Consultation, Sunnyvale, CA

Sara Honn Qualls

University of Colorado Colorado Springs, CO

Rita Ghatak

Aging 101, Center for Care and Innovation, Los Altos, CA

Ranak B. Trivedi

Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Palo Alto, CA

Center for Innovation to Implementation, VA Palo Alto Health Care System, Palo Alto, CA

Lynn C. Waelde

Palo Alto University, Palo Alto, CA

About the Authors

Dolores Gallagher-Thompson, PhD, ABPP, is active professor emerita in the Department of Psychiatry/Behavioral Sciences at Stanford. For 30+ years she conducted intervention research with caregivers of older adults experiencing memory loss.

Ann Choryan Bilbrey, PhD, is the CEO of the Optimal Aging Center for Training and Research Consultation. Along with Dr. Gallagher-Thompson, she is co-developer of the CWC2.0 Workshop series.

Sara Honn Qualls, PhD, ABPP, is Kraemer Family Professor of Aging Studies and Professor of Psychology at the University of Colorado Colorado Springs. She publishes on mental health and aging, caregiving, and geropsychology.

Rita Ghatak, PhD, is active in direct care, research, and education. Founder of Aging Adult Services at Stanford University Medical Center, she developed many care models. She is the CEO of Aging101.

Ranak B. Trivedi, PhD, assistant professor at Stanford University has sought to improve the self-management of serious illnesses by enhancing the collaboration and coping of patient–caregiver dyads. She is a director of education and training in the VA Palo Alto Health Care System.

Lynn C. Waelde, PhD, is a professor emeritus at Palo Alto University. Her work addresses the use of mindfulness/meditation to promote resilience/recovery from stress and trauma. She is the developer of Inner Resources for Stress, named a best practice by the Benjamin Rose Institute on Aging.

Advances in Psychotherapy – Evidence-Based Practice

Series Editor

Danny Wedding, PhD, MPH, Professor Emeritus, University of Missouri–Saint Louis, MO

Associate Editors

Jonathan S. Comer, PhD, Professor of Psychology and Psychiatry, Director of Mental Health Interventions and Technology (MINT) Program, Center for Children and Families, Florida International University, Miami, FL

J. Kim Penberthy, PhD, ABPP, Professor of Psychiatry & Neurobehavioral Sciences, University of Virginia, Charlottesville, VA

Kenneth E. Freedland, PhD, Professor of Psychiatry and Psychology, Washington University School of Medicine, St. Louis, MO

Linda C. Sobell, PhD, ABPP, Professor, Center for Psychological Studies, Nova Southeastern University, Ft. Lauderdale, FL

The basic objective of this series is to provide therapists with practical, evidence-based treatment guidance for the most common disorders seen in clinical practice – and to do so in a reader-friendly manner. Each book in the series is both a compact “how-to” reference on a particular disorder for use by professional clinicians in their daily work and an ideal educational resource for students as well as for practice-oriented continuing education.

The most important feature of the books is that they are practical and easy to use: All are structured similarly and all provide a compact and easy-to-follow guide to all aspects that are relevant in real-life practice. Tables, boxed clinical “pearls,” marginal notes, and summary boxes assist orientation, while checklists provide tools for use in daily practice.

Continuing Education Credits

Psychologists and other healthcare providers may earn five continuing education credits for reading the books in the Advances in Psychotherapy series and taking a multiple-choice exam. This continuing education program is a partnership of Hogrefe Publishing and the National Register of Health Service Psychologists. Details are available at https://www.hogrefe.com/us/cenatreg

The National Register of Health Service Psychologists is approved by the American Psychological Association to sponsor continuing education for psychologists. The National Register maintains responsibility for this program and its content.

Library of Congress of Congress Cataloging in Publication information for the print version of this book is available via the Library of Congress Marc Database under the Library of Congress Control Number 2023934039

Library and Archives Canada Cataloguing in Publication

Title: Family caregiver distress / Dolores Gallagher-Thompson (Department of Psychiatry and

Behavioral Sciences, Stanford University School of Medicine, Palo Alto, CA), Ann Choryan Bilbrey

(Optimal Aging Center for Training and Research Consultation, Sunnyvale, CA), Sara Honn Qualls

(University of Colorado Colorado Springs, CO), Rita Ghatak (Aging 101, Center for Care and

Innovation, Los Altos, CA), Ranak B. Trivedi (Department of Psychiatry and Behavioral Sciences,

Stanford University School of Medicine, Palo Alto, CA, Center for Innovation to Implementation,

VA Palo Alto Health Care System, Palo Alto, CA), Lynn C. Waelde (Palo Alto University, Palo

Alto, CA).

Names: Gallagher-Thompson, Dolores, author. | Bilbrey, Ann Choryan, author. | Qualls, Sarah Honn,

author. | Ghatak, Rita, author. | Trivedi, Ranak, 1975- author. | Waelde, Lynn C., author.

Series: Advances in psychotherapy--evidence-based practice ; v. 50.

Description: Series statement: Advances in psychotherapy--evidence-based practice ; volume 50 |

Includes bibliographical references.

Identifiers: Canadiana (print) 20230193978 | Canadiana (ebook) 20230194001 | ISBN 9780889375178

(softcover) | ISBN 9781613345177 (EPUB) | ISBN 9781616765170 (PDF)

Subjects: LCSH: Dementia—Patients—Home care—Psychological aspects. | LCSH: Caregivers—Mental health

services. | LCSH: Caregivers—Mental health. | LCSH: Caregivers—Care. | LCSH: Caregivers—

Psychology. | LCSH: Stress management.

Classification: LCC RC521 .G35 2023 | DDC 362.1968/31—dc23

© 2023 by Hogrefe Publishing

www.hogrefe.com

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|v|Acknowledgments

We thank the many caregivers whose lived experience provided the basis for our passion to work in this field. We also thank collaborators who provided expertise on specific chapters: Jennifer Ramsey, PhD (Chapter 1), Maureen Ross, LMFT (Chapter 2), and Victoria Ngo, PhD (Chapter 9). We are grateful for their contributions.

Contents

Acknowledgments

Preface

1  Description

1.1  Terminology

1.1.1  Individuals Providing and Receiving Care

1.2  Caregiver Demographics

1.2.1  Ethnic and Racial Diversity of Caregivers

1.2.2  Age, Relationship to Care Recipient, and Gender

1.2.3  Reasons for Providing Care

1.3  The Emotional and Physical Impacts of Caregiving

1.3.1  Common Caregiver Responses to Stress: Mental Health Issues

1.3.2  Common Caregiver Responses to Stress: Physical Health Issues

1.3.3  Other Stressors Most Caregivers Face

1.3.4  Positive Aspects of Caregiving

1.4  Knowledge of the Care Recipient’s Dementia

1.4.1  Neurocognitive Disorders: Basics About Dementia

2  Theories and Models

2.1  Stress and Coping Model

2.2  Sociocultural Model

2.3  Trajectory of Illness Model

2.4  Transition Into Early-Stage Caregiving

2.4.1  Description

2.4.2  Interventions

2.5  Early-Stage Caregiving

2.5.1  Description

2.5.2  Intervention

2.6  Transition Into Middle Stage

2.6.1  Description

2.6.2  Interventions

2.7  Transition Into Late Stage

2.7.1  Description

2.7.2  Interventions

2.8  Postcaregiving Life

2.8.1  Description

2.8.2  Interventions

2.9  Interventions With Family Systems

2.9.1  Rationale for the Family Systems Approach

2.9.2  Theories of Family Therapy and Applications to Caregiving

2.10  Dyadic Models

3  Assessment

3.1  Caregiver Core Assessment Battery

3.1.1  Overall Mental Health

3.1.2  Caregiver Specific Challenges

3.1.3  Caregiver Supports

3.2  Optional Measures to Address Unique Needs

3.2.1  Assessment of Suicidality

3.2.2  Screening for Cognitive Function

3.2.3  Other Specific Measures

3.2.4  Assessing Domains Not Listed

3.2.5  Working With Diverse Caregivers

3.2.6  Monitoring Change

3.3  Assessment Tools in Depth

3.3.1  Overall Mental Health

3.3.2  Caregiving Challenges

3.3.3  Caregiving Supports

3.3.4  Optional Measures

4  Interventions to Reduce Caregiver Distress

4.1  Introduction of Stepped Approach

4.1.1  Levels of Intervention

4.1.2  Supporting Evidence for Interventions

4.1.3  Diversity and Inclusion Issues

4.2  Psychoeducational Interventions

4.2.1  Coping With Caregiving (CWC)

4.2.2  Savvy Caregiver Program

4.2.3  Inner Resources for Stress (IR)

4.2.4  Building Better Caregivers (BBC)

4.2.5  iSupport

4.3  Specialized Care: Psychotherapeutic Interventions

4.3.1  Cognitive Behavioral Therapy (CBT)

4.3.2  Acceptance and Commitment Therapy (ACT)

4.4  Multicomponent Intervention Programs

4.4.1  Resources for Enhancing Alzheimer Caregivers Health (REACH II)

4.4.2  New York University Caregiver Intervention (NYUCI) Program

4.5  Family Systems Approach

4.5.1  Family Interventions

4.5.2  Dyadic Therapy

4.6  Technology-Enabled Interventions

4.6.1  Caregiver Wellness and Self-Care

4.6.2  Caregiver Education and Navigation

4.6.3  Caregiver Support

4.6.4  Caregiving Task Management

4.6.5  Adaptive Home Products

4.6.6  Using Technology in Session

4.7  Other Interventions

4.7.1  Care Management

4.7.2  Palliative Care

4.8  Ethical Dilemmas Often Experienced by Caregivers

4.8.1  Over-Arching Themes

4.8.2  Practical Issues Rooted in Ethical Dilemmas in the Caregiving Trajectory

4.9  Summary of Critical Points to Effectively Treat Distressed Caregivers

5  Professional Practice Issues

5.1  Training Content and Competencies

5.2  Education and Training Resources

5.3  Billing for Caregiver Services

6  Case Vignette

7  Further Reading

8  References

9  Appendix: Tools and Resources

|xi|Preface

Caring for older adult friends or family members with chronic illness is demanding and strenuous. Caregiving can have serious negative effects on caregivers’ physical and mental health, particularly if the care recipient is experiencing Alzheimer’s disease or another form of dementia (ADRD). At the same time, caregiving provides its own rewards and satisfactions. However, since our health care systems generally focus on care recipients and not caregivers, many of their specific needs for education, support, and treatment are not addressed. Recent legislation such as the BOLD Infrastructure for Alzheimer’s Act (2018) and the newly enacted National Strategy to Support Family Caregivers (2022) provide leadership and funding so these efforts can and will move forward. Caregivers are the backbone of long-term care in the US.

Providing services to family caregivers of persons with dementia (or other forms of chronic illness) requires that we think of caregivers in relation to their care recipients since their difficulties and strengths are inextricably linked. Over time, we need to understand their changing needs and those of their larger family/friend social network. We focus on ADRD caregivers in this book because they are the most distressed, the most well-studied, and the persons with whom we have the most clinical experience.

We invite you to dive deeply into this book and to utilize the many resources provided in the appendices. We welcome your feedback as you put these recommendations into practice!

Dolores Gallagher-Thompson

Ann Choryan Bilbrey

Sara Honn Qualls

Rita Ghatak

Ranak B. Trivedi

Lynn C. Waelde

|1|1Description

This book focuses on assessment and intervention with persons who provide care to an older adult with a significant cognitive impairment referred to as dementia. Although much of this information can be applied to caregivers of persons with other chronic medical and/or psychiatric illnesses, we focus on dementia caregivers because more is known about how to help them. For clinicians unfamiliar with this topic, this section introduces key content and issues. If clinicians have no personal experience with the devastation created by dementia, we recommend they read one of the many excellent books written by caregivers describing their lived experience, found in Appendix 1.

1.1  Terminology

1.1.1  Individuals Providing and Receiving Care

The term caregiver refers to an individual, typically a family member, friend, partner, or neighbor, who is responsible for providing care “above and beyond” that normally given to a person with chronic medical conditions. Typically, caregivers begin their role when the care recipient is experiencing moderate cognitive impairment plus difficulties taking care of their everyday roles and responsibilities. They are referred to as informal caregivers because care is usually provided without pay, whereas most formal caregivers are paid. Care is broadly defined to include physical, emotional, social, and/or financial support. The primary caregiver is the individual who is the person assuming the greatest responsibility. Other informal caregivers are secondary caregivers. A long-distance caregiver is someone who lives so far from the person that they cannot provide continuous in-person care.

The person receiving care is the care recipient. They may be experiencing a significant level of memory loss or other dementia symptoms and may also have a formal dementia diagnosis. They may also have other concurrent medical and/or mental health issues. They are often referred to as a person living with dementia (PLWD).

The medical care team ideally is a collaborative interprofessional, transdisciplinary team working together for the benefit of both caregivers and care recipients. This team, dependent on setting, may contain the care recipient’s primary care physician and specialists, nurse practitioners or physician assistants, and registered nurses along with other outpatient specialists including |2|social workers, physical and occupational therapists, pharmacists, and psychologists. In some settings caregivers are an integral part of the team; they inform about current needs, viability of recommended treatments and are the link between the medical systems and the patient.

Interventions and Evidence

Actions deliberately taken to improve caregivers’ well-being are termed interventions. In a discussion of evidence-based practice in psychology, empirically supported treatments were defined as interventions shown to be “efficacious in controlled clinical trials” (APA Presidential Task Force on Evidence-Based Practice, 2006). The terms evidence-based and empirically supported interventions are based on a high level of scientific rigor; that is, randomized controlled trials (RCTs). Interventions described in this book as evidence-based have RCTs supporting their use. For those that lack RCT-level research but that are used successfully in clinical practice with distressed caregivers, we use the term evidence-informed. Interventions in this category may either be in the early stages of development and show promise, or they may be using elements of the evidence-based programs that have been tailored to better meet clients’ needs.

Legal Issues

A frequent caregiver concern is whether the PLWD can make independent decisions, either legally, financially, or medically. This ability is referred to as capacity, or the ability to make a particular decision, at a specific time or in a specific situation (see Moye, 2020 for a comprehensive guide to capacity). Competency is a legal term, determined by a judge, influenced by a clinical examination in which it is assessed that the PLWD no longer has the level of judgement and decision-making ability needed to manage their own affairs and to sign official documents. This legal determination has a great effect on the care recipient’s life, including where they live, who they live with, how their money is spent, whether they can enter or dissolve a contract, and accept or decline treatment. Any PLWD judged to be incompetent will have a conservator or guardian (who may or may not be the primary caregiver) appointed who is responsible for making decisions the care recipient cannot make on their own and for handling financial matters. Competency can be a partial or full judgement dependent on progression of the dementia. A health care agent is the person chosen by the care recipient to make medical decisions for them when they no longer have capacity to make those decisions themselves. If the care recipient has not selected one, a judge may assign medical decision-making to the conservator. Even if the caregiver is the health care agent, if the care recipient has a conservator, the conservator is the person who is responsible for payment.

Care Settings

Most PLWD will require some form of long-term care. Home care and/or health services are provided inside the care recipient’s own home and can include personal care, meal preparation, and housekeeping, as well as skilled services such as nursing and occupational or physical therapy. Respite care services provide the caregiver with a break from caregiving demands. This |3|can be an informal arrangement among friends and family or a more formal arrangement with a paid caregiver who stays in the home monitoring the care recipient while the caregiver is away. There are also community based respite programs available in some areas. Adult day care occurs outside the home. Several days a week the care recipient is transported to a center that offers meals, activities, and opportunity for social engagement (e.g., art, music, or exercise). Assisted living refers to residential settings that provide aid with activities of daily living (e.g., meal preparation and medication management) for those who can live with some degree of independence. Many PLWD are moved first into assisted living, although as dementia progresses, the support they need increases dramatically, so they may be transferred to a higher level of care. Designated memory care units accept persons with behavioral problems while providing unique activities designed to promote social engagement. Those with significant concurrent medical issues plus dementia may need to be transferred to a skilled nursing facility (SNF) for round-the-clock care. Often PLWD and their family caregivers respond well to palliative care and hospice programs as they near end of life. These programs provide comfort without curative intent.

1.2  Caregiver Demographics

As of 2020 there were an estimated 43 million caregivers in the United States (AARP & National Alliance for Caregiving, 2020). More than 11 million of them provided 16 billion hours of unpaid care to individuals living with ADRD (Alzheimer’s Association, 2022). These sources found that about 83% of older adults with dementia rely on help from family members with about two-thirds of these informal caregivers being women.

1.2.1  Ethnic and Racial Diversity of Caregivers

US caregivers are quite diverse: 61% report they are non-Latino White, 14% describe themselves as Black or African American, 17% as Hispanic/Latino, and 5% as Asian/Pacific Islander/Native Hawaiian, and a small percentage identify as Native American/American Indian (AARP & National Alliance for Caregiving, 2020). These census categories mask the complexities of racial and ethnic diversity, however, since they are not homogenous groups. Each category consists of a significant number of subgroups, each with their own history, culture, values, and belief systems, and in some cases, language too. For example, Hispanic individuals can originate from Spain, Mexico, Cuba, Puerto Rico, and South or Central America. While they may have the Spanish language in common, they differ significantly in immigration history and degree of acceptance by the non-Latino white majority culture. Within the Asian/Pacific Islander/Native Hawaiian category there are six dominant subgroups (Asian Indian, Chinese, Filipino, Japanese, Korean, and Vietnamese) who collectively comprise approximately 97% of the Asian American population when classified by single race. Each group has its own |4|unique socioeconomic profile, preferred language, and cultural heritage. Clinicians need to inquire about each client’s cultural heritage and not make assumptions, based on name or other identifying features.

1.2.2  Age, Relationship to Care Recipient, and Gender

About 30% of caregivers report they are 65 or older (Alzheimer’s Association, 2022). More than 50% care for a parent or parent-in-law and 10% care for their spouse. Many caregivers (66%) live with the person they are caring for, and 25% are considered part of the sandwich generation, caring for both younger children and one or both of their parents or parents-in-law.

Most caregivers are women. They are 2.5 times more likely than men to live with the care recipient, and they tend to provide more hours of care. Of those who provide 40 hours or more of care weekly, 73% were women. The facts and figures report of the Alzheimer’s Association (2022) noted that women reported higher levels of burden, depression, and impaired health compared to men. This may reflect the greater amount of time they spend giving complex care to recipients with more severe problems. Not unexpectedly, in such situations, women caregivers are more likely to seek psychological help, with 85% seeking individual counseling, and 84% seeking respite care (Alzheimer’s Association, 2022).

For men who are caregivers, a typical scenario is that of an older husband taking care of his wife. Though we know less about their experiences, research has found several important differences between men and women. First, men more often hire professional caregivers rather than provide care themselves. This is likely due to lack of experience with many typical tasks of caregiving, particularly in the middle and later stages when personal care needs increase. Sons and husbands may maintain the decision-making role when it comes to medical care, placement, and the like, even if others in the family (e.g., daughters, daughters-in-law, other relatives) are doing most of the hands-on caregiving. It is important for clinicians to ask about family roles and dynamics and who is responsible for caregiving decisions.

1.2.3  Reasons for Providing Care

Why do caregivers take on this role and remain in it for many years? Sixty-five percent note that their main motivation is keeping their care recipient at home, followed by just under half (48%) noting that they were the closest in proximity to the care recipient.

Who takes on the caregiving role varies significantly by culture, race, and ethnicity. For example, in many Asian cultures, the eldest son is expected to take on the primary caregiving role, yet it is his wife who typically provides needed hands-on care to the mother- or father-in-law, whether or not they have a compatible relationship. For many African Americans, caregiving is done by fictive kin, individuals not related by blood to the care recipient but who nevertheless have strong ties akin to familial bonds. In Latino families, multiple generations may live in the same household and share the caregiving |5|tasks. Although there is still usually one primary caregiver, caregiving overall is a more shared experience in many cultural groups than it is in white families where one person often takes on most of the work – typically, the eldest daughter.

1.3  The Emotional and Physical Impacts of Caregiving

Due to the progressive nature of dementia, chronic stress is an ongoing issue for most caregivers. A recent survey found that 38% of caregivers reported high or very high physical stress, and 59% reported high or very high emotional stress of day-to-day caregiving (Alzheimer’s Association, 2022).

1.3.1  Common Caregiver Responses to Stress: Mental Health Issues

Depression and Anxiety

A meta-analysis comparing dementia caregivers with noncaregivers found they were significantly more likely to experience depression and anxiety (Ma et al., 2018), with higher prevalence noted in female caregivers, caregivers with male care recipients, and spouses of care recipients (Sallim et al., 2015). In a population-based study with rigorously matched controls, Roth and colleagues (2020) noted that spouses and younger caregivers had an increased risk for depressive symptoms, while noting that other demographic characteristics, such as ethno-racial identity and gender, were not associated with increased vulnerability.

Strain/Burden

Caring for someone with dementia is a demanding job, and as a result 40% of caregivers report a significant level of burden associated with being a caregiver (AARP & National Alliance for Caregiving, 2020). Hours are long, help is often unavailable, and tasks are more difficult for dementia caregivers when compared to caring for someone with other chronic illnesses. One such example is medical-related tasks: 22% of dementia caregivers report completing medical or nursing related tasks, even though 51% note they have no experience doing these types of tasks and lack the resources to accomplish them. In comparison, only 11% of nondementia caregivers report completing medical related tasks. However, burden is not equally endorsed by all caregivers. Many, particularly those who identify as members of Black, Indigenous, and People of Color (BIPOC) racial and ethnic minority groups, find it discordant with their cultural values and beliefs to think about, much less talk about, caregiving in this way.

|6|1.3.2  Common Caregiver Responses to Stress: Physical Health Issues

Caregivers report poorer subjective health than noncaregivers, and there is an association between poorer health, greater reported burden, and depressive symptoms (Pinquart & Sörensen, 2007). Caregivers delay their own preventive health care which can lead to worsening of pre-existing conditions or delay of treatment of undiagnosed conditions (Son et al., 2007). Common negative health effects, such as hypertension, increased stress hormones, slower wound healing, and increases in coronary heart disease have been documented (Schulz & Eden, 2016