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- Herausgeber: Hogrefe Publishing
- Kategorie: Fachliteratur
- Sprache: Englisch
- Veröffentlichungsjahr: 2023
Learn how family caregivers of people with dementia can be supported by psychotherapy Provides step-by-step guidance for face-to-face or remote therapy Illustrated with therapeutic dialogs from real cases Includes downloadable intervention handouts This handbook addresses the extremely challenging situation that family caregivers of people with dementia face and is informed by the use of evidence-based psychotherapeutic strategies to support them. The book guides readers step-by step through effective therapeutic strategies, mainly based on cognitive-behavioral therapy, and illustrated with excerpts of dialogs between therapists and family caregivers from real sessions. Different modules address topics such as dealing with challenging behavior, self-care, perfectionism and guilt, as well as changes in the relationship with the ill person, barriers to seeking social and professional support, stress management and emotion regulation, accepting one's own limits, and dealing with institutionalization. These modules can be put together to meet different individuals' needs. Particular emphasis is placed on creating a positive therapeutic alliance, resource activation, and helping caregivers develop the motivation for change. Finally, multiple handouts that can be used in clinical practice are available for download. The intervention is suitable for various settings, including face-to-face therapy or remote forms such as telephone or online therapy. This manual is ideal for clinical psychologists, gerontologists, psychotherapists, social workers, and counsellors working with people with dementia and their families.
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Psychotherapeutic Support for Family Caregivers of People With Dementia
The Tele.TAnDem Manual
Gabriele Wilz
Marlena L. Itz (Translator)
About the Author
Gabiele Wilz, PhD, is Head of the Department of Counseling and Clinical Intervention and Director of the Psychotherapeutic Outpatient Clinic and CBT qualification at the Friedrich Schiller University Jena since 2009. She studied psychology in Marburg, received her PhD in 1998 at University of Leipzig, and worked from 1998 to 2003 as Assistant Professor at the University of Leipzig in the Department of Medical Psychology and Medical Sociology. From 2003 to 2008 she was Professor of Clinical and Health Psychology at the Technical University of Berlin. She is a licensed clinical psychologist and clinical supervisor with licensure in cognitive-behavioral psychotherapy.
Library of Congress Cataloging in Publication information for the print version of this book is available via the Library of Congress Marc Database under the LC Control Number 2023945513
Library and Archives Canada Cataloguing in Publication
Title: Psychotherapeutic support for family caregivers of people with dementia : the Tele.TAnDem
manual / Gabriele Wilz ; Marlena L. Itz (translator).
Other titles: Therapeutische Unterstützung für pflegende Angehörige von Menschen mit Demenz. English
Names: Wilz, Gabriele, 1966– author.
Description: The present volume is a translation of Therapeutische Unterstützung für pflegende
Angehörige von Menschen mit Demenz. Das Tele. TAnDem Behandlungsprogramm by Gabriele Wilz,
Denise Schinköthe, & Tanja Kalytta
Copyright © 2015 by Hogrefe Verlag GmbH & Co. KG. -- Title page
verso. | Includes bibliographical references.
Identifiers: Canadiana (print) 20230526551 | Canadiana (ebook) 20230526594 | ISBN 9780889376311
(softcover) | ISBN 9781616766313 (PDF) | ISBN 9781613346310 (EPUB)
Subjects: LCSH: Cognitive therapy—Handbooks, manuals, etc. | LCSH: Caregivers—Psychology—Handbooks,
manuals, etc. | LCSH: Dementia—Patients—Care—Handbooks, manuals, etc.
Classification: LCC RC489.C63 W5513 2024 | DDC 616.89/1425—dc23
Original title: Therapeutische Unterstützung für pflegende Angehörige von Menschen mit Demenz. Das Tele.TAnDem Behandlungsprogramm by Gabriele Wilz, Denise Schinköthe, & Tanja Kalytta
© 2015 by Hogrefe Verlag GmbH & Co. KG
Translated by Marlena L. Itz
© 2024 by Hogrefe Publishing
www.hogrefe.com
The authors and publisher have made every effort to ensure that the information contained in this text is in accord with the current state of scientific knowledge, recommendations, and practice at the time of publication. In spite of this diligence, errors cannot be completely excluded. Also, due to changing regulations and continuing research, information may become outdated at any point. The authors and publisher disclaim any responsibility for any consequences which may follow from the use of information presented in this book.
Registered trademarks are not noted specifically as such in this publication. The use of descriptive names, registered names, and trademarks 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.
The cover image is an agency photo depicting models. Use of the photo on this publication does not imply any connection between the content of this publication and any person depicted in the cover image.
Cover image: © TatyanaGI – iStock.com
Author photo, back cover: © Anne Günther – University of Jena, Germany
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ISBN 978-0-88937-631-1 (print) • ISBN 978-1-61676-631-3 (PDF) • ISBN 978-1-61334-631-0 (EPUB)
https://doi.org/10.1027/00631-000
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Contents
Foreword
Preface
1 Demands, Burden, and Health Impact of Caregiving
1.1 Introduction
1.2 Overview of Specific Caregiver Burden in Dementia
1.3 Models and Predictors for Burden and Coping With Caregiving
1.3.1 Problem Behavior as Well as Noncognitive Symptoms and Neuropsychiatric Disorders
1.3.2 Grief and Family Caregivers’ Experience of Loss
1.3.3 Experiencing and Witnessing Changes in the Care Recipient due to Dementia
1.3.4 Role Changes and Taking on New Roles
1.3.5 Social Isolation and Insufficient Social Support
1.4 Family Caregivers’ Coping Strategies
1.5 Positive Aspects of Caregiving
2 Need for and Effectiveness of Psychosocial Interventions
2.1 Need for Helpful Family Caregiver Interventions
2.2 Demands for Helpful Family Caregiver Interventions
2.3 CBT-Based Caregiver Interventions: Content, Evaluation, and Recommendations
2.3.1 Recommendations for the Timing and Duration of the Intervention
2.3.2 Recommendations for Setting Conditions
2.4 Concept and Evaluation of the Tele.TAnDem Intervention
2.4.1 Overview of the Content of the Intervention Concept
2.4.2 Number of Sessions, Duration, and Setting Conditions of the Intervention Concept
2.4.3 Tele.TAnDem Evaluation Results
3 Helpful Information on Dementia and Caregiving-Specific Issues for Family Caregivers
3.1 Illness-Specific Topics
3.1.1 Dementia Diagnosis
3.1.2 Course of the Illness
3.1.3 Problem Behaviors in Dementia
3.1.4 Causes of Problem Behaviors
3.2 Medical Questions
3.3 Care-Related Questions
3.4 Legal Questions
3.5 Financial Questions
4 Diagnostic Tools for Caregiving of People With Dementia
4.1 Questionnaires for Family Caregivers
4.1.1 Psychological and Physical Burden Measurements
4.1.2 Measurements of Specific Caregiving Situation Issues
4.2 Questionnaires for the Subjective Assessment of Behavioral Problems in Dementia Patients
4.3 Assessment of the Severity of Dementia
5 Therapist Attitude and Relationship Building
5.1 The Caregivers Are Caregiving Experts
5.2 Normalizing and Depathologizing Counseling
5.3 Family Caregivers Are Doing Their Best: Appreciation and Validation of Their Efforts
5.4 Isolation and Severe Suffering: Empathy and Patience
5.5 Unchangeable Burdens and Loss of Control: Confrontation and Acceptance
6 Therapy Topics, Intervention Methods, and Framework
6.1 Individualized Therapy
6.2 Setting
6.3 Therapy Process and Structure of the Sessions
6.4 Work Between Sessions: Therapeutic Homework
7 First Session and Relationship Building
7.1 Goals of the Module
7.2 Therapeutic Approach
7.2.1 Relationship Building and Imparting Knowledge
7.2.2 Exploring the Caregiving Situation
7.2.3 Analysis and Selection of the Main Problem Areas
7.2.4 Developing Motivation to Change
7.2.5 Goal Definition
7.2.6 Concluding the First Session
8 “I Grew Up in the Countryside, and That Was a Given There”: Changing Dysfunctional Thoughts and Appraisals
8.1 Goals of the Module
8.2 Therapeutic Approach
8.2.1 Identifying, Challenging, and Criticial Examination of Dysfunctional Thoughts
8.2.2 Imagination Exercises for the Identification and Modification of Dysfunctional Thoughts
8.2.3 Working Out Effects on Dysfunctional Thoughts on Mood and Behavior
9 “You Are Still at Home Here!” – Dealing With Challenging Behavior
9.1 Goals of the Module
9.2 Therapeutic Approach
9.2.1 Psychoeducation and Guided Discovery
9.2.2 Exploring Challenging Behaviors and Encouraging Self-Disclosure
9.2.3 Behavioral Analysis
9.2.4 Goals for Dealing Better With Challenging Behaviors
9.2.5 Modification of Appraisals
9.2.6 Problem-Solving Strategies for Behavior Modification
9.2.7 Accepting Feelings Related to Challenging Behavior
10 “Anger Is Completely Normal” – Stress Management and Emotion Regulation
10.1 Goals of the Module
10.2 Therapeutic Approach
10.2.1 Decatastrophizing and Normalization of Fury and Anger in Acute Stress Situations
10.2.2 Dealing With Strong Emotionality: Four Steps for Dealing With Acute Stressful Situations
10.2.3 Encouragement of Understanding and Acceptance
10.2.4 Work on the General Level of Tension
11 “And What About Me?” – Self-Care and Value-Based Activities
11.1 Goals of the Module
11.2 Therapeutic Approach
11.2.1 Imparting and Working Out the Importance and Necessity of Self-Care and Taking Up Balancing Activities
11.2.2 Promoting Self-Care: Collecting, Selecting, and Planning Balancing Activities
11.2.3 Problem-Solving Training for Planning and Implementing Pleasant Activities
11.2.4 Reflecting the Implementation and Maintenance of Self-Care and Planned Pleasant Activities
11.2.5 Dealing With a Guilty Conscience and Feelings of Guilt: Normalization and Acceptance
12 “From the Diagnosis Until Death” – Dealing With Change, Loss, and Grief
12.1 Goals of the Module
12.2 Therapeutic Approach
12.2.1 Perceiving and Expressing Burdensome Thoughts and Feelings: Sadness, Guilt, and Anxiety
12.2.2 Confronting and Coping With Feelings of Grief, Guilt, and Anxiety
12.2.3 Accepting Thoughts and Feelings
12.2.4 Identifying and Processing Dysfunctional Thoughts in Relation to Emotional Experiences
12.2.5 Working on Redefining Roles
12.2.6 Resource Activation
12.3 The Time After the Death of the Person With Dementia
12.3.1 Consequences of Anticipatory Grief
12.3.2 Complicated Grief Reaction
13 “I Need to Do It on My Own” – Support Options for Family Caregivers of Persons With Dementia
13.1 Goals of the Module
13.2 Identifying the Need for Assistance
13.3 Overcoming Barriers to Utilizing Support
13.4 Finding the Right Time for Support
13.5 Searching for Support Options
13.6 Difficulties Regarding Utilization of Support
13.6.1 Asking for Help
13.6.2 Working With Professional Services
13.6.3 Family Caregivers Expect Support From the Therapist Regarding Legal and Organizational Questions
14 Nursing-Home Placement – When the Limits of Home Care Have Been Reached
14.1 Goals of the Module
14.2 Decision-Making Factors
14.2.1 Encouraging Caregivers to Reflect on Their Stress Limits
14.2.2 Feelings of Guilt and Fear of Making the Wrong Decision
14.2.3 Information on Institutional Care
14.3 Support in Decision Making
14.3.1 Reflecting on the Positive and Negative Aspects As Well As Consequences of Nursing Home Care
14.3.2 Working out Realistic Expectations Regarding Nursing-Home Care
14.4 Care in an Emergency
14.5 Dealing With the Decision
14.6 Therapeutic Procedure for Intolerable Caregiving Situations
15 Completion of Therapy
15.1 Goals of the Module
15.2 Therapeutic Approach
15.2.1 Evaluating the Achieved Goals
15.2.2 Gathering Coping Options and Maintaining Achieved Changes
15.2.3 Dealing With Crises
15.2.4 Utilization of Additional Support Services
15.2.5 Feedback to the Therapist
15.2.6 Saying Goodbye
References
Appendix
|1|Foreword
Books for mental health professionals are published every year, sometimes updating what is already known, sometimes rewording what we already know, but rarely providing something very new and important – what we don’t know and what is important for us to know. This book by Gabriele Wilz, Psychotherapeutic Support for Family Caregivers of People With Dementia, is a welcome, important, indeed much needed and exciting, contribution to the field. And I feel privileged to be able to write its Foreword.
As any practicing therapist knows, people rarely change by simply telling them to do something different. Yet, the extent to which therapists intervene when working clinically with a caregiver – and I must confess that I am guilty of this myself – is telling them “It is important to take care of yourself.” What is needed beyond this simple behavioral suggestion is how to deal with the emotions – guilt, stress, apprehension, resentment, depression, anger – that might make it difficult for them to care for themselves. What therapists need is to help the caregiver learn, sometimes painstakingly so, how to develop a new and very difficult caregiver script, one that involves significant changes in their emotions, thinking, and behavior. This volume provides clinicians with clinical guidelines for helping caregivers adopt this new, complicated, and emotionally difficult script.
This volume describes how therapists can work clinically with patients or clients who are caring for a significant other who is suffering from dementia. Among the many difficulties associated with dementia are short-term memory loss, language problems, orientation difficulties, difficulty in caring for themselves, and impaired cognitive functioning. Depending on the severity of impairment, cognitively impaired individuals typically require the assistance of others to get through the day. Currently, it is estimated that over 50 million people in the world suffer from some form of dementia – most typically Alzheimer’s disease. Moreover, this alarming statistic is likely to increase as individuals live longer.
Although medical research has been focusing on ways to better understand dementia, it has yet to come up with a cure or even an effective treatment. Knowledge of the psychological aspects of dementia similarly leave much to be desired, and we are limited in our understanding of what therapists need to know and do to help caregivers cope with the task of helping loved ones. In short, there is a crying need for clinical guidelines to help therapists in working with caregivers, and this volume fills this much-needed void.
Caring for a cognitively impaired significant other is probably one of the most difficult experiences one is likely to encounter in one’s lifetime. I say this not only from my work as a therapist, but also from personal experience. It is a totally new world, whereby the rules for day-to-day interactions with a loved one are likely to be different from anything one has experienced in the past. It can be unbelievably challenging emotionally, cognitively, and behaviorally. Caregivers are likely to experience a myriad of emotions, such as stress, anger, guilt, depression, exasperation – just to mention a few. Cognitively, there is confusion – being at a loss in trying to understand what is happening to one’s significant other along with confusion about what to do in day-to-day interactions. Behaviorally, a caregiver’s own life is disrupted, and they find themselves having difficulty personally functioning as they had in the past. Without clinical guidelines for working with caregivers, therapists are likely to end up having their own emotional, cognitive, and behavioral difficulties professionally.
Psychotherapeutic Support for Family Caregivers of People With Dementia offers highly sophisticated clinical guidelines, describing everything a therapist needs to know in working with caregivers. It describes not only what to do and why to do it, but also the behavioral, cognitive, and emotional obstacles that can undermine therapeutic progress. Moreover, it contains several modules that can allow the practicing clinician to personalize the intervention to the specific needs of the patient.
In short, this is an invaluable volume that provides practicing therapists with clinically relevant and empirically grounded therapeutic guidelines for working with the ever-increasing number of caregivers who are confronted with the challenging task of caring for a loved one. In addition to offering helpful information about dementia, it also describes the burden put on caregivers and validates the very important role of support in their lives. The the|2|rapy modules that can be tailored to the needs of the patient include guidelines on how to solve the numerous situational challenges one is likely to encounter in caring for a loved one; strategies for dealing with the wide range of emotions associated with caregiving; and ways to achieve the all-important goal of accepting those aspects of one’s life circumstances that cannot be changed. Not only is this clinically meaningful, but research evidence exists that it indeed makes a significant positive impact on the psychological and physical well-being of caregivers.
Marvin R. Goldfried, PhD
Stony Brook University
New York, USA
|3|Preface
The majority of caregiving responsibilities for older people is shouldered by family members. Due to the increasing number of people with dementia worldwide and the amount of care and assistance they require, supporting caregivers is becoming an increasingly important issue in health care. Without family members who take on most of the care in private households, it would not be possible to ensure sufficient assistance for people with dementia, as well as for older family members who need help in general.
Although family caregivers are usually healthy, they are at great risk of developing mental and physical health problems such as depressive and anxiety symptoms, insomnia, and exhaustion.
This raises the question of why the enormously helpful strategies of psychotherapy are usually not provided for the heavily burdened caring relatives, to prevent mental illness and physical impairments. Up to now, cognitive-behavioral therapy (CBT) for family caregivers has been hardly addressed in the training of psychotherapists, even though some research studies have evaluated comprehensive psychotherapeutic concepts in this area. Moreover, as a significant preventive intervention, CBT for family caregivers is not regularly established in health care systems.
Because of this need, I have continuously pursued the goal of developing and evaluating specific psychotherapeutically sound support concepts for family caregivers. As a result, the Tele.TAnDem concept was created, which was published in 2015 in cooperation with Dr. Denise Schinköthe and Tanja Kalytta from my research group (Wilz, G., Schinköthe, D., & Kalytta, T. (2015). Therapeutische Unterstützung für pflegende Angehörige von Menschen mit Demenz. Das Tele.TAnDem-Behandlungsprogramm. Göttingen: Hogrefe (Psychotherapeutic support for family caregivers of people with dementia. The Tele.TAnDem concept).
Dr. Marlena L. Itz has translated the English version of the handbook in an intensive, careful, and outstanding manner. On basis of this translation, all parts of the text were considered in a joint exchange and linguistic revisions were discussed. Furthermore, I have undertaken relevant updates and have adapted the topics with regard to international requirements.
The handbook is based on cognitive behavioral therapy. In 10 different modules main typical caregiving topics and useful intervention strategies such as cognitive restructuring, emotion regulation, problem solving, self-care, and coping with loss and grief are addressed. Furthermore, specific aspects of acceptance and commitment therapy are integrated, because many aspects of the disease and the caregiving situation cannot be changed. Helping caregivers to manage and accept the negative emotions and cognitions accompanying such a difficult experience (e.g. anger, grief, shame, guilt, anxiety, and depression) is another central objective of the intervention.
The book aims to provide comprehensive and specific guidance as how to work psychotherapeutically with family caregivers. This goal is realized through clear instructions, case examples, work sheets, exercises, and precise explanations. Special features of the book are the comprehensive dialogues of real therapy sessions and a focus on how to build and maintain a helpful therapeutic alliance and motivation to change for family caregivers. The intervention is suitable for various settings such as group, face-to-face, or remote therapy forms (telephone and online/web-based therapy). In several RCTs and qualitative studies, the therapy concept has been positively evaluated.
So far, the caregivers evaluated this specific psychotherapeutic support as particular helpful, as the following quotations illustrate:
“Discussing and analyzing stressful situations when I got out of my skin at the end of my nerves and yelled at my innocent, ill husband. Working together on how to cope with these feelings, without affecting my husband. How I let off steam, was very helpful.”
“I have gained a much better understanding of the disease and can react more calmly to the problems.”
“By listening, responding to me, being taken seriously and noticed, problem solutions were worked out, emotions were captured and taken seriously, to develop other perspectives on situations helped me and strengthening my person.”
|4|“Through the consultation, I have learned to take more care of myself and to do something for myself. I try not to lose sight of that. The word mindfulness has taken on a very special meaning for me!”
“I try hard to get space for myself. The realization that I can’t give up completely if I want to persevere, that this is even essential.”
“It was a blessing that I participated in this therapy and the only effective help. I am infinitely grateful for that!”
“The psychological support was perfect! Please don’t change anything!”
I am very happy that a translation of the manual is now available. I hope it will be helpful for therapists and other professionals, as well as for family caregivers.
Jena, in February 2023
Gabriele Wilz
|5|1 Demands, Burden, and Health Impact of Caregiving
This chapter provides an overview of the specific burden caregivers may experience while providing care for a family member living with dementia. Models and predictors that may play a crucial role in the individual experience of burden are presented as well as coping strategies and positive aspects of providing care.
1.1 Introduction
There are currently 57.4 million people worldwide living with dementia, which is predicted to triple by the year 2050 (GBD 2019 Dementia Forecasting Collaborators, 2022). As there is presently no causal treatment for dementia, ensuring the care of people with dementia will become a challenge in the coming decades for health policy makers and families. Contrary to the stereotype of “nursing-home placement,” around 69 % of people suffering from dementia are cared for at home, with almost two thirds of them cared for exclusively by family members, mainly wives, daughters, or daughters-in-law (Wimo et al., 2018).
Due to the specific symptoms of dementia, family members are confronted with particularly burdensome problem situations that can constantly change daily and as the disease progresses. Caring for someone with dementia can thus be described as an extremely demanding task. The caregiver must constantly overcome new challenges in daily life and in relation to the changes in the person with dementia. This large number of stressors often causes health-related impairments. In addition to the increased health impairments (Cheng, 2017) and mortality rates (Schulz & Beach, 1999), caregivers of people with dementia have considerably more severe impairments in mental and physical health compared to comparable healthy populations or caregivers of other chronically ill care recipients (Pinquart & Sörensen, 2003).
In particular, 30 – 60 % of caregivers have reported clinically meaningful depressive symptoms (Barrera-Caballero et al., 2021; Collins & Kishita, 2020; Joling et al., 2015), higher prevalence rates of anxiety (32 %, Kaddour & Kishita, 2020), and higher rates of comorbidity of both depression and anxiety (32 – 54 %, Barrera-Caballero et al., 2021; Joling et al., 2015) and lower quality of life (Karg et al., 2018). Health impairments have also been shown for physiological parameters such as higher blood pressure, risk of cardiovascular diseases, reduced immune function, and a longer healing time for wounds (Gouin et al., 2008; Mausbach et al., 2007; von Känel et al., 2008). Particularly, female caregivers, who make up more than 70 % of all caregivers, are especially burdened (Barrera-Caballero et al., 2021; Joling et al., 2015; Kaddour & Kishita, 2020). Accordingly, Collins and Kishita (2020) reported 1.45 times higher odds of women having depression compared to male caregivers.
Additionally, when caregivers receive insufficient support, their experience of burden is particularly pronounced (Holst & Edberg, 2011). Thus, due to the above-mentioned health consequences for the caregivers on the one hand, as well as the increasing numbers of dementia cases due to demographic changes, on the other hand, there is an urgent need to preserve at-home care and support caregivers in this challenging task.
1.2 Overview of Specific Caregiver Burden in Dementia
When caring for a family member with dementia, caregivers face an abundance of complex, challenging, and time-consuming demands. Experiences and results from our studies provide evidence of the long-lasting burden of being involved in caregiving, which lasted an average of 5 years. For example, family caregivers reported spend|6|ing an average of 11 hours per day providing care, with more than half of the participants (52 %) reporting that they had to ensure round-the-clock care. For 26 % of study participants, this meant that they either could not leave the dementia sufferer alone during the day or only for less than 1 hour. The high need for care was due to attending to orientation disorders, confusion, self-threatening behavior, or personality changes, as well as performing care tasks (household management, assistance with food and fluid intake), helping with personal hygiene, especially for incontinence (64 % of the people with dementia), visiting public authorities, doctor visits, and engaging with the person with dementia. At the time of the initial assessment, 40 % of the family caregivers provided nighttime care in addition to daytime care: Family caregivers had to help the person with dementia up to 12 times per night, mainly with using the toilet or changing incontinence pads and/or bed linens. These tasks are particularly burdensome for caregivers who care for a physically mobile person with dementia whose nightly disturbances increase (see also Miyamoto et al., 2002).
Moreover, family caregiving often occurs without a prior deliberate decision-making process. It is often seen as a nonquestionable “matter of course.” Accordingly, family caregivers are mostly unprepared for the ensuing tasks and burden. Here it is important to note that, due to the changing symptoms, which are in turn dependent on the severity of the disease, caregivers are confronted with various and changing caregiving situations. In the following list, the most important demands regarding guidance, support, and caregiving tasks are summarized:
Support for the family member with dementia in daily tasks. In the beginning, assistance with complex day-to-day activities is necessary (e.g., shopping, handling of financial matters), which are then fully taken over by the caregiver. As the course of the disease progresses, simpler everyday activities (such as getting dressed, preparation and intake of meals) require more intensive guidance and support from the caregiver.
Taking care of personal hygiene and assisting with mobility (e.g., walking, going to bed) at advanced stages of the disease.
Attending to the relative with dementia when temporal, local, and personal disorientation increases.
Dealing with dementia-related cognitive impairments, neurological symptoms (e.g., speech disorders), gait disorders, incontinence, and other consequences of dementia.
Dealing with restlessness, anxiety and depression, day–night rhythm disorders, aggressiveness, social withdrawal, and passivity, as well as delusional symptoms.
Dealing with challenging behavior in private surroundings and in public.
Stabilizing and promoting remaining abilities and skills as well as mental well-being through meaningful activation and involvement of the relative with dementia in everyday life.
However, caregiving not only places special demands on the organization and arrangement of daily life and requires the appropriation of new skills for the support and care of the impaired person, family caregivers must also adapt mentally in order to perceive and accept the changes in a person close to them, as well as to learn to deal with these changes and integrate them into their relationship. The challenge in dementia caregiving lies, therefore, in coping mentally and emotionally with the disease and processing one’s own emotional distress and losses. In particular, the following aspects describe the situation in which family caregivers find themselves.
Due to fluctuations in symptoms, it is difficult to adapt consistently to the care recipient’s limitations and personality changes and to adjust to living together accordingly; for the caregiver, uncertainties and doubts arise again and again regarding their own behavior and attitudes toward the care recipient.
The cognitive and personality changes associated with dementia are grieved in a way similar to grieving the loss of an ill partner or parent: The intensity and depth of this “anticipatory grief” is comparable to grieving the death of a loved one and represents considerable emotional burden.
For caregiving within a marriage, the healthy spouse must take on new roles and functions, which can lead to persistent overload: Prospects for joint planning of life together in late adulthood must be abandoned or reconsidered.
Adult children must make decisions for their now dependent parent with dementia: Role reversal and parentification of the children occur.
Caring for a family member is not only based on emotional attachment and closeness, but can also be motivated by feelings of obligation or gratitude, moral or familial norms, (presumed) expectations of other family members, or the social environment. This can lead to the experience of burden if the caregivers do not perceive the expected gratitude from the family member with dementia or other family members and if conflicts arise in the caregiving situation.
|7|Fantasies of detachment from the partner or the parent who has now become a stranger, or the desire for their death as a liberation from the burdensome caregiving situation can elicit considerable feelings of guilt.
1.3 Models and Predictors for Burden and Coping With Caregiving
Pearlin’s stress model (Pearlin et al., 1990) addresses and gives structure to some of these complex challenges that family caregivers face. On the one hand, this model describes primary stressors in caregiving, such as sociodemographic variables, type of care arrangement, and development of care. These are further categorized into objective (e.g., cognitive status, everyday-life skills, problem behaviors) and subjective (overburden, loss of relationship quality, appraisal of stress) stressors. On the other hand, secondary stressors are defined, which are subdivided into role stressors (familial tasks, occupation) and intra-psychological stressors (coping and self-esteem, loss of self). Additionally, the consequences (health, well-being, taking on a new role, use of healthcare services) stemming from those demands, as well as the caregivers’ resources (coping with problems and emotions, finding meaning in caregiving, and social support), are taken into consideration. In section 1.3.1, the most important of the above-mentioned stress-related and influential factors are described in detail.
1.3.1 Problem Behavior as Well as Noncognitive Symptoms and Neuropsychiatric Disorders
A high level of stress can be observed in caregivers when there is an increase in problem behavior as well as in noncognitive neuropsychiatric disorders such as anxiety, lack of drive, apathy, or restlessness. Behavioral abnormalities play a crucial role in the caregiver’s well-being and early nursing-home placement (Coen et al., 2002; Perren et al., 2006). They are of greater importance than the cognitive and functional impairments in the person with dementia (Perren et al., 2006), the number of caregiving tasks, as well as the duration of care (Fauth & Gibbons, 2014). The more frequently behavioral problems occur and the higher their severity is, the lower the well-being of the family caregiver (Perren et al., 2006). An increase in behavioral symptoms leads to increased stress experience and deterioration of the caregiver’s health (Hooker et al., 2002). In addition, behavioral disorders also have a negative effect on the person with dementia’s well-being (Haupt et al., 2000; Hurt et al., 2008). Furthermore, the challenging behavior also changes the quality of the relationship between caregivers and care recipients and can lead to depressive mood for caregivers (Schoenmakers et al., 2010).
1.3.2 Grief and Family Caregivers’ Experience of Loss
The experience of grief in informal caregivers commences long before the actual death of the person with dementia (Cheung et al., 2018). This phenomenon is referred to as anticipatory grief (Lindemann, 1994) or predeath grief (Meuser & Marwit, 2001). The prevalence among family caregivers of people with dementia ranges from 47 % to 80 % (Dehpour & Koffman, 2023). The grief experienced is hardly different from grief after a close person’s death (Meuser et al., 2004). Family members who stated that they did not grieve nevertheless expressed strong feelings of loss when they talked about the person with dementia, even though they did not classify their emotions as grief. Due to the specific dementia symptoms, family members often have difficulty naming the experience of loss, because the person with dementia still physically participates in life, while their personality increasingly changes. Thus, predeath grief in dementia is a distinctive type of grief characterized by compound serial losses, including the loss of intimacy and companionship, personal freedom, and social or occupational opportunities: Moreover, role identity separates and emotionally disconnects the caregiver from the still physically present person with dementia (Dehpour & Koffman, 2023). The cause of such a grief reaction can be understood in the context of attachment theory models (Bowlby, 1977). People form attachments based on their desire for protection and security. When such an attachment is threatened or broken by death, illness, or other critical life events, a grieving process occurs. Due to the progressive course of dementia, this adaptation process persists and represents an extreme emotional burden for the family member (Dempsey & Baago, 1998). Ambivalence with feelings of hope and resignation arises. This ambiguity regarding loss can also lead to family |8|members not openly admitting their grief, making them less likely to want to make use of outside help and/or support (Dempsey & Baago, 1998; Sanders et al., 2007). Moreover, the necessary grieving process is complicated by the lack of recognition in the environment. The experienced feelings of shame, embarrassment, anger, and fury cannot be communicated. The lack of exchange in this respect can lead to social withdrawal (Frank, 2008) and avoidance of openly talking about grief (Walker et al., 1995).
Holley and Mast (2009) showed that the intensity of family caregivers’ experienced grief can be considered as one of the most important and constant predictors of burden. Accordingly, caregivers experiencing a higher level of grief reported lower well-being and higher caregiver burden (Cheung et al., 2018) as well as higher perceived stress (Kobiske et al., 2019). Although predeath grief and caregiver burden share risk factors (later stage of dementia, behavioral problems of the person with dementia, and primary caregiving role), there are also risk factors unique to predeath grief, namely a younger age of the person with dementia, lower educational attainment of caregivers, and being a spousal caregiver (Liew et al., 2019).
The extent to which family caregivers are able to cope with and adapt to relationship and role changes and/or losses depends largely on how caregivers deal with their grief over the experienced losses (Kasl-Godley, 2003). Results of some studies suggest that adequately dealing with the experienced losses positively influences how dementia caregivers cope with both caregiving and grief after the person with dementia’s death (Kasl-Godley, 2003). Those who do not deal with such losses prior to the death of their family member with dementia showed higher depression and anxiety scores as well as complicated grief symptoms after the death (Hebert et al., 2006). Research results from Boerner et al. (2004) and Hebert and Schulz (2006) showed that many family caregivers experience difficult and, to some extent, long-lasting grief. One year after the person with dementia’s death, 30 % of family caregivers fulfilled the criteria for a depressive disorder, and 20 % fulfilled the criteria for complicated grief (Hebert & Schulz, 2006).
In this context, it should be noted that a strained relationship with the person with dementia before dementia onset has been identified as a fundamental predictor of psychological impairment in caregivers. Williamson and Shaffer (2000) showed that dementia family caregivers were less depressed and were less aggressive, impulsive, and impatient in caregiving situations if the relationship before taking on the caregiver role was characterized by mutual respect for each other’s needs.
1.3.3 Experiencing and Witnessing Changes in the Care Recipient due to Dementia
The caregiver’s perception of the care recipient’s suffering substantially impacts the caregiver’s experience of burden and depression (Huang, 2022; Schulz et al., 2017). Especially when the caregiver sees no possibility in positively influencing the relative with dementia’s emotional state, sympathizing with and witnessing their family member suffering presents a heavy burden (Monin & Schulz, 2009).
1.3.4 Role Changes and Taking on New Roles
The loss of autonomy and the personality changes mostly associated with dementia are experienced by healthy spouses as a massive change in their relationship because usual behavior patterns in the relationship are no longer reacted to in a familiar way by the person with dementia (Clark et al., 2019). The partner’s dementia thus disturbs the existing role allocation within a generally long-lasting marital relationship. The healthy partner’s assumption of new roles often contributes to their overload (Välimäki et al., 2012). The redefinition of marital identity, in which both the ill and healthy partners take on new roles, can be complicated because dementia symptoms often fluctuate, thus making it more difficult to come to terms with the adapting process. Sometimes, dementia symptoms are denied, or their severity is misconceived in order to withstand the tension between strangeness and familiarity. These burdensome aspects of the relationship with the ill partner or parent can lead to denial about dementia (Clark et al., 2019). However, an adaptation of family life to the disease cannot be achieved in this case: Family caregivers react inadequately to the cognitive and behavioral impairments, and the person with dementia will be overtaxed with trying to behave like a healthy person. For adult children, role reversal and parentification occur, which can have considerable potential for conflict for both sides and require the caregiving children to adapt substantially (Välimäki et al., 2012).
|9|Therefore, it is understandable that caregivers are extremely burdened by the changes in the relationship (Enright et al., 2020) and are more likely to give up home care and move their family member to a nursing home. For example, the increasing loss of knowledge of their own identity and the accumulation of situations when they no longer recognize their family members is particularly burdensome and thus often associated with the decision for nursing-home placement (Annerstedt et al., 2000).
1.3.5 Social Isolation and Insufficient Social Support
Another major burden is the social isolation many caregivers fall into while providing care. On the one hand, this occurs due to reduced time and organizational possibilities for socializing, and, on the other hand, because friends and close relatives often withdraw themselves (Liu et al., 2021; Wawrziczny et al., 2017). Although dementia has become increasingly less taboo in recent years, many caregivers still report social exclusion from preexisting networks. Lack of knowledge and uncertainty regarding how one should deal with the person with dementia are often responsible for this reaction from the social environment (Wawrziczny et al., 2017). The experience of burden is especially pronounced when caregivers receive unsatisfactory and insufficient professional support (Lee et al., 2022; Xu et al., 2021).
Furthermore, the COVID-19 pandemic increased social isolation and, therefore, the burden of caregivers of a person who is at high risk for severe COVID-19 disease and mortality. Thus, the importance of social support and access to social resources for the caregivers’ well-being became even more evident (Cohen et al., 2020). Moreover, the COVID-19 pandemic further highlights the importance of access to remote forms of therapy, especially for family caregivers.
1.4 Family Caregivers’ Coping Strategies
Family members of persons with dementia use various strategies to cope with the stressful care situation, and these strategies vary from individual to individual. Studies conclude that strategies such as active problem solving, searching for information, or positive reassessment and acceptance have a stress-reducing effect (Gilhooly et al., 2016). Due to the course of disease progression in dementia, many problems faced by caregivers cannot be changed, despite caregivers’ greatest efforts. Therefore, successful coping includes the ability to recognize one’s own limits and strengths, to ask for help, and to learn to accept the disease and its consequences (Kneebone & Martin, 2003). One’s attitude toward the caregiver role also affects the level of experienced burden. Finding meaning or personal growth in caregiving eases coping (McLennon et al., 2011). Subjective appraisals also affect whether objective stress factors, especially disease-related behavioral changes, are experienced as strenuous and exhausting. Furthermore, given the same level of objective difficulties, the subjective burden experience depends on the caregiver’s conviction on whether they have the situation under control and are able to cope with the situation by their own efforts. Various studies point to the importance of self-efficacy beliefs for caregiver burden. Belief in one’s own self-efficacy with respect to dealing with behavioral problems and the ability to control anger-generating thoughts reduces stress and especially anxiety and depressive symptoms (Lopez et al., 2012; Nogáles-González et al., 2015). In contrast, avoidance strategies such as wishful thinking, resignation, or passive complaining can lead to depressive symptoms (Gilhooly et al., 2016). Moreover, the availability of social support and positively rated social contacts can provide relief (Atienza et al., 2001).
1.5 Positive Aspects of Caregiving
Besides the burden of caregiving, a substantial proportion of family caregivers report positive experiences through providing care, such as increased intimacy with the care recipient, strengthening of self-esteem, personal growth, a sense of purpose, and the feeling that providing care is worthwhile (Cabote et al., 2015). Family caregivers who could find important meaning or personal purpose in providing care showed fewer depressive symptoms and had higher self-esteem, and this positive appraisal was not related to objective stressors of providing care (Noonan & Tennstedt, 1997). These positive aspects of caregiving can thus compensate for burden, reduce depression, and increase the caregiver’s well-being (Pinquart & Sörensen, 2004; Wu et al., 2022). In addition, despite changes and burden, closeness and intimacy to the care recipient is usually preserved and enables continuous, valuable shared experiences (Bjørge et al., 2019).
|11|2 Need for and Effectiveness of Psychosocial Interventions
This chapter presents the need and requirements for helpful family caregiver interventions, the current state of research regarding specific intervention studies, as well as recommendations for family dementia caregiver interventions that are based on these research findings.
2.1 Need for Helpful Family Caregiver Interventions
The results of numerous studies indicate that the utilization of professional support (such as day care, outpatient home care) reduces caregiver burden and contributes to a longer stay at home for the person with dementia (Eska et al., 2013; Vandepitte et al., 2016). Paradoxically, however, despite the high need for professional assistance, there is relatively low usage of the available support (Brodaty et al., 2005; Lamura et al., 2006; Røsvik et al., 2020). In a cross-sectional study with 170 family caregivers, less than half of the family caregivers (42 %) used professional help (Rother & Wilz, 2010). Family members of people with dementia usually hesitate for a long time until they seek outside assistance (Neville et al., 2015) and many caregivers feel ashamed to ask for or accept help (Winslow, 2003).
Acquiring information on available support may be difficult for family caregivers due to their social isolation. Many family caregivers do not have adequate information about dementia, treatment options, and available support services. Generally, family members are often too stressed to seek help and report that they do not have the time to gather information. Some also criticize that the information for the service providers is too extensive, making it difficult to have an overview and compare them (Bieber et al., 2019; Stephan et al., 2018). In a review Bieber et al. (2019) showed the following main concerns of caregivers: attitudes toward services, financial aspects, burden and stress, behavioral problems of the person with dementia, and worries about restriction of one’s own independence.
In the case of out-of-home services, especially in rural areas, there may also be concerns regarding others’ reactions. Moreover family caregivers could be afraid that information shared in caregiver groups will not be treated confidentially (Morgan et al., 2002). Additional important psychological barriers are family caregivers’ worries about alienation or distancing themselves from the person with dementia, or fear that, for example, a day-care center visit could increase concern for the well-being of the person with dementia or cause severe unrest (Schacke & Zank, 1998).
For home services, caregivers complain about intrusion of privacy. They do not want to have a stranger in their household, under whose observation they might feel controlled (Roelands et al., 2008). The rejection of help by the person with dementia, the lack of the caregivers’ acceptance of professional assistance, as well as feelings of guilt and obligation are also discussed as important barriers (Grässel et al., 2010).
The selected findings show that the decision-making process regarding whether and which type of professional assistance is utilized is complex and particularly dependent on individual appraisals of the situation. Psychological interventions for prevention and reduction of burden-related secondary diseases for dementia caregivers should thus specifically take these mental barriers into account. The modification of obstructive attitudes toward utilization of support (changing dysfunctional thoughts) and the encouragement of acceptance and utilization of relieving assistance offers are therefore considered essential objectives of professional family caregiver interventions.
|12|2.2 Demands for Helpful Family Caregiver Interventions
In a review of 34 studies Bressan et al. (2020) classified the needs of family caregivers into four themes: being supported by formal services and emotionally, receiving accessible and personalized information, being trained and educated to manage changes, and finding a balance to deal with changes in their lives and time for themselves. Taking these topics into account, as well as the challenges of dementia caregiving presented in Chapter 1, interventions should include the following aspects:
imparting knowledge on dementia, financial and legal issues, and support services;
modifying the appraisal of symptoms to promote understanding and acceptance of the disease;
developing strategies for dealing with behavioral problems and promoting problem-solving skills;
coping with and accepting the new role;
supporting the caregiver in processing the change of the relationship and disease-related losses, and developing strategies for dealing with stressful emotions such as grief, anger, fury, guilt, shame, anxiety, and depression;
improving the perception of stress limits and encouraging self-care and consideration of one’s own needs;
identifying dysfunctional thoughts and schemes regarding one’s own caregiving abilities, perfectionism in caregiving, and assumption of responsibility;
removing barriers to and promoting utilization of professional and informal support;
encouraging helpful, positive family relationships as well as shared positive activities with the person with dementia.
Thus, a wide range of intervention strategies is required in order to provide adequate support for the above-mentioned problem areas. A sole focus on managing objective stressors is overly simplistic as it ignores the psychopathological (e.g., dysfunctional thoughts, activity restriction, and experiential avoidance) as well as salutogenetic factors (e.g., utilizing the available psychosocial resources) that lead to caregivers’ subjective appraisal of caregiving as either burdensome or manageable (see Chapter 1).
2.3 CBT-Based Caregiver Interventions: Content, Evaluation, and Recommendations
Among the numerous interventions for family caregivers of people with dementia, cognitive behavioral therapy (CBT) has been found to be particularly effective on depression, anxiety, and burden. However, on other outcomes such as physical health, quality of life, or stress, effects of CBT were not consistent (Cheng et al., 2019; Gallagher-Thompson & Coon, 2007; Hopkinson et al., 2019; Verreault et al., 2021). Following a detailed description and analyses of these single studies, the meta-analysis by Cheng et al. (2019) presented a differentiated overview.
An explanation of the inconsistency of CBT yielding effects on a wider range of outcomes could be that only a few caregiver intervention studies implemented a comprehensive CBT approach and used sound evaluation methods. The analysis of the type and frequency of intervention methods used in previous studies shows that, to date, the majority of studies focused solely on only a part of the burden and problem areas, using a limited repertoire of intervention strategies (Kurz & Wilz, 2011). The most frequently used strategies were ones to improve problem-solving skills, followed by imparting knowledge, and, third, guidance for self-care. Interventions focused much less often on expanding the support network, modification of dysfunctional thoughts, emotion regulation, or coping with loss and grief (Kurz & Wilz, 2011).
Few caregiver intervention studies have focused on changing dysfunctional cognitions, although this focus represents one of the most efficient cognitive-behavioral strategies, particularly for treating depressive symptoms. Such cognitions can include, for example, thoughts reflecting over-protectiveness (e.g., not letting the care recipient do things of which they are capable out of a fear that they will fail) or dysfunctional thoughts, which prohibit receipt of professional or informal support. One important objective of these effective interventions is to encourage caregivers to think more adaptively and to develop more realistic beliefs and goals that facilitate their everyday coping with caregiving demands and their own self-care. The benefits of changing dysfunctional thoughts have been demonstrated with respect to caregivers’ depressive symptoms (Losada et al., 2011) and anxiety (Vernooij-Dassen et al., 2011).
|13|In the following paragraphs a selection of studies with a comprehensive cognitive-behavioral intervention approach will be described in more detail.
Losada et al. (2011) conceptualized a 12-hour group program, in which primarily cognitive restructuring and pleasant activity scheduling were used as intervention methods. The family caregivers in the intervention group benefited in terms of reduced depressive symptoms, increased pleasant activities, and a decline in dysfunctional thoughts, compared to the untreated control group.
In the study by (Coon et al., 2003), two different treatment concepts were compared. In the anger management group, the intervention methods were frustration management, relaxation skills, positive self-instruction, self-observation of dysfunctional thoughts, as well as social competence training and role-playing within the framework of 10 group sessions. In the depression management group, the relationship between mood and positive activities was explained, a self-change plan was developed, and individual goals were defined. Moreover, the therapeutic work involved encouraging positive activities and problem-solving skills with a focus on cognitive interventions (10 group sessions). Both intervention concepts showed positive effects in terms of reductions in depressive symptoms, hostility, and anger, compared to the waiting-list control group.
Gallagher-Thompson et al.’s (2000) study also compared two intervention groups with 10 group sessions each. In the group, increasing life satisfaction, the intervention focused on observing the relationship between positive activities and mood, promoting positive activities, developing a self-change plan, and on individual goals. In the increasing problem-solving group, the intervention comprised strategies for improving problem-solving skills, stress management, emotion regulation, and differentiation between changeable and unchangeable situations. The comparison with the waiting-list condition showed an improvement in depressive symptoms only for the increasing life satisfaction group. However, an increase in action-related coping strategies was found for both intervention groups.
In a follow-up study, the Gallagher-Thompson et al. (2003) research group compared a CBT-based group therapy with traditional supportive family caregiver groups. Several CBT techniques were implemented: stress management, relaxation techniques, realistic evaluations of the person with dementia’s behavior, social competence training, promotion of positive activities, and creation of a self-change plan. The CBT group showed a decrease in depressive symptoms and an increase in positive coping strategies in comparison to the support group.
An extension of this approach was investigated in a follow-up study (Gallagher-Thompson et al., 2008). Within 13 to 16 weekly group sessions, a wide range of CBT strategies were used: psychoeducation, dealing with behavioral abnormalities, problem solving, role-play, homework, changing dysfunctional thoughts, promoting social competence, positive activities and shared activities with the person with dementia, promoting self-care, relaxation training, imparting professional support services, as well as planning for the future regarding the person with dementia’s needs. The results showed reductions in depressive symptoms and in general caregiving-related experienced stress. Moreover, more caregiving-related skills were reported, and the caregivers rated the CBT group as more helpful than the minimal telephone-based support that the control group received.
In the REACH II study Belle et al. (2006) evaluated a multicomponent intervention including education, skills to manage problem behaviors, social support, cognitive strategies, and strategies for enhancing healthy behaviors and managing stress. The intervention consisted of 12 in-home and telephone sessions over a period of 6 months. The results showed greater improvement in quality of life (using a composite score including the outcomes depression, burden, self-care, social support, and care recipient problem behaviors) for Hispanic, Latino, and Caucasian caregivers of the intervention group compared to a control group with minimal support.
In the study of Losada et al. (2015) CBT and ACT (acceptance and commitment therapy) and a control group were compared. In the CBT group the intervention concept included cognitive restructuring, promoting social support, relaxation, and increasing pleasant activities. In the ACT group participants were encouraged to accept that aspects of the disease and the care situation cannot be changed. Participants learned how to manage negative emotions and cognitions in a more helpful way. Both intervention groups successfully reduced dementia caregivers’ depressive symptomatology, anxiety, dysfunctional thoughts, and increased their leisure activities at postintervention. Experiential avoidance was only reduced in the ACT group and follow-up effects were only found for depression in the CBT group.
Regarding the findings of the described meta-analyses and intervention studies, the following recommendations should be considered: Effective interventions actively include family members by using behavioral exercises, role-|14|
