Hoarding Disorder: A Practical Guide to an Interdisciplinary Treatment

By Nassim Agdari-Moghadam

This book offers in-depth information on pathological hoarding, describing both the root of the disorder and its progression. How can hoarding disorder be diagnosed? What are the challenges involved in treatment? How can professionals best deal with those affected? In this practical guide, health professionals will find the answers to these and many other questions.

In the last few years the awareness of this disorder has gradually increased – not only in the academic community, but also in the media – and it has become clear that there are a considerable number of people worldwide who continue to suffer from it. The case studies presented here share essential insights into the diverse backgrounds and lives of affected individuals. In addition, hoarding disorder has since been classified as a new mental disorder by the WHO, which means many psychoanalysts, psychologists, psychiatrists and social workers will need to be trained accordingly. This book offers valuable guidance.

• Language: English
• Publisher: Springer
• Release date: Jul 30, 2021
• ISBN: 9783030723422

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© The Author(s), under exclusive license to Springer Nature Switzerland AG 2021

N. Agdari-MoghadamHoarding Disorderhttps://doi.org/10.1007/978-3-030-72342-2_1

1. Introduction

Nassim Agdari-Moghadam¹  

(1)

Sigmund Freud University, MMag. Dr. Nassim Agdari-Moghadam, Vienna, Austria

Nassim Agdari-Moghadam

Email: [e-mail]

Keywords

History in AustriaTerminologyRelevance for psychoanalysisConsumptionFetishism cultural factors

Introduction

This chapter reviews the history of hoarding research in Austria , which began with the initiative of those affected to reach out and found a support group. As I move on to the current state of international research, I address terminology and definition issues. This is followed by an overview of different perspectives on social and cultural implications. Specifically, I explain the significance of material possessions in modern-day society as well as their role in creating a sense of security, providing a rationale behind the relatively new phenomenon of hoarding disorder. Particular emphasis is placed on the connection between consumer culture and hoarding symptomatology. Today, it is largely considered the norm to buy, consume, discard, and buy again. Alongside this throwaway cycle, other interconnections of society and hoarding are also revealed.

In 2005, when a support group for people affected by hoarding was started as part of a new university for psychotherapy sciences in Austria, nobody was aware of the historical relevance of this event. The support group had arisen simply from the need of those affected to share their suffering with others . Up until then, participants had believed they were alone in their experience. Seeing there were others with the same kind of behavior initially provided them with great relief.

At the time, people involved were unaware that they were dealing with a new mental disorder on the rise. No one knew just yet how many people were affected by hoarding behavior, or how great the psychological strain hoarding problems could cause. More and more individuals were actively seeking help. However, the resources to answer the demand for assistance was still lacking . As the professional community was only beginning to explore hoarding as a pathological phenomenon, there were no mental health experts available who fully understood this form of expression or could have offered their support.

At the beginning of hoarding research, it was unclear whether the phenomenon described a way of life, a trend, or a mental disorder. Standard diagnostic tools used to identify disease, particularly the International Classification of Diseases (ICD) and Diagnostic and Statistical Manual of Mental Disorder (DSM) , did not yet include any such phenomenon as hoarding. Those affected, however, have always suffered considerable impairment and psychological strain in their day-to-day lives. Their tireless commitment and active participation gradually changed the picture and contributed to a broader awareness. Section 1.1 gives a more detailed overview of the history of hoarding research in Austria , specifically the role of Sigmund Freud University of Vienna.

It is above all the phenomenon’s complexity and many different forms that continue to feed my curiosity. From the very beginning, my work with patients and later scientific discussions have been characterized by a certain kind of excitement, as if being involved in the discovery of something new. In 2013, the DSM-5 for the first time included a separate entry for hoarding disorder, confirming that a new mental illness was born. The official recognition of hoarding disorder shows just how relevant the issue is at present. The latest revision of the ICD-11 followed suit to list hoarding as an independent disorder in the obsessive-compulsive or related disorders category. This can be seen as a breakthrough for both the professional world and patients. Over the next few years it remains to be seen the extent to which the topic will become even more relevant. The inclusion of hoarding disorder in the DSM-5 and ICD-11 marked an essential step in the right direction toward providing relief for individuals with HD. While establishing a new mental disorder may be viewed critically, I would like to draw attention to the benefits this entails, including standardized approaches and methods applied in science and improved access to treatment in practice. The chapter on diagnostic considerations (Sect. 2.​5) gives a more detailed account of the advantages and disadvantages of current research developments.

Over the last 80 years, several articles and reports have appeared about individuals who hoard. However, it was not until the 1970s that the scientific community began to publish relevant articles on PubMed. These publications have only been sporadic, and up to the release of the German edition of this book, a comprehensive guide to hoarding was still lacking. This book is the first practical guide for professionals that details the state-of-the-art in German-speaking hoarding research. It provides professionals from different disciplines concerned with hoarding with a complete guide to the definition, cause, development, and treatment of the disorder, directly addressing the need for diagnostic measures and therapy options for this very new disorder.

The first part focuses on the beginnings of German-speaking hoarding research at Sigmund Freud University, Vienna. The scientific discussion of the phenomenon has intensified only recently , which is why the history of hoarding research in the German-speaking world is a rather brief one. At Sigmund Freud University and its outpatient clinic, pioneering work was carried out by an HD research group and professionals in the field. In addition to detailing this work, this introductory part also examines issues of terminology and definition, as well as the social and cultural factors of influence applying to hoarding.

The second chapter is devoted to compulsive hoarding or hoarding disorder and provides several different perspectives . To help better understand hoarding phenomena, I begin by explaining preliminary theoretical considerations such as related to the underlying causes as well as symptoms and features of the disorder. The chapter concludes with problems of diagnosis, emphasizing the broad spectrum of hoarding disorder and a need to differentiate comorbidities.

In the third chapter of this book, I provide an overview of current treatment recommendations and the unique challenges of HD treatment. The special issue of how to protect the interests of children and adolescents growing up in homes with hoarding parents shall be touched on. The chapter also demonstrates the benefits of and opportunities for interdisciplinary exchange. It presents a set of assumptions providing the foundation for a medical and psychotherapeutic treatment that helps us better understand and reduce the suffering of individuals affected by HD, and to finally induce behavioral changes.

The fourth chapter supplements the theoretical and practical considerations presented in previous sections by discussing the psychodynamic aspects based on a set of case vignettes.

The book is complete with a summary and recommendations for future research and some of the most common test procedures relevant to diagnosing HD.

1.1 History of Hoarding Research in Austria

In Vienna, the study of HD began with an interview on a radio show. Shortly after this interview in 2001, the group analyst Elisabeth Dokulil, née Vykoukal, began to offer group therapies for those affected. From the very beginning, the demand was high. Due to Dokulil’s initiative and continuing efforts , Sigmund Freud University established the first Austrian self-help group for individuals with HD as part of its outpatient clinic in 2005. It was a happy coincidence that I was allowed to participate in this group as a student. The group was exceptional in that it proved difficult for participants to appear in scheduled meetings. They were unable to meet regularly and continuously at the same time and place. Gradually, we came to understand the reasons and motives for this inability and created a framework to accommodate it. I was part of a student group at Sigmund Freud University to offer assistance and support to the participants of this self-help group, using participant observation. This method is still practiced at Sigmund Freud University today.

The intensive involvement with HD patients provided me with a unique opportunity to delve into their lives and better understand their day-to-day problems. It was an excellent opportunity to gain first-hand experience with hoarding behavior and learn about it from a practical perspective. This intensive involvement also enabled me to learn about group dynamics in a self-help setting.

Soon after the self-help group for patients started, the need for self-help groups for relatives became evident. Intervision and supervision groups formed, allowing psychotherapists at the university outpatient clinic to offer individual and group therapy. In the next years, the study in the field intensified, and publications on HD followed. Over the years, we have hosted four HD conferences at Sigmund Freud University. We saw another milestone when our HD research group won second place in the 2008 competition for the City of Vienna Health Award.

Over the years, I have been able to work with many HD patients, developing a close familiarity with their problems and practices. After completing my training as a psychoanalyst , I started offering therapy to individuals with HD. I also work with professionals, inviting them to participate in my seminars and supervision sessions. This exchange also inspired the idea of this book, aiming to provide psychotherapists, doctors, psychologists, social workers, family assistants, and others professionally involved in HD with a practical guide in treating affected individuals.¹

1.2 Terminology and Definition

There was neither an exact term nor a precise definition of hoarding disorder in the German-speaking world until standard diagnostic manuals included the illness. However, the latest German revision of the ICD has not yet come into effect, which is why there is still a certain degree of variation in terminology and definition. Researchers refer to compulsive hoarding behavior as Messie-Syndrom [1], Vermüllungssyndrom [2], Diogenes-Syndrom [3], Organisations-Defizit-Störung [4], or Desorganisationsproblematik [5].

In the early 1980s, American and German self-help movements mainly used the word Messie to describe hoarders. Sandra Felton, herself a hoarder, was the first to use the term, describing the mess associated with compulsive hoarding. However, the problem with this term is that the ending in ie appears belittling. It is hence inappropriate, rendering it unfitting for use in professional discourse. In the German-speaking world, hoarding disorder was one of the first mental health problems patients themselves had brought to the professionals’ attention. It is, therefore, hardly surprising that confusion as to its terminology would arise. Professionals are still working to create a standard language and criteria to differentiate diagnoses.

The global English-speaking community has adopted the term hoarding from American research early on. Initially, the name was strongly associated with OCD (compulsive hoarding). In 2013, however, hoarding was included in the DSM-5 as a separate, isolated disorder (hoarding disorder). The ICD-11 now lists hoarding in the obsessive-compulsive disorders category.

Hoarding derives from hoard (German Hort), which etymologically describes a hidden treasure, hiding place, or cave. The word was extinct in Middle High German and revived later through the discovery of The Song of the Nibelungs ([6], p. 423). From a psychological perspective , these etymological roots, meaning treasure and hiding place, is particularly impressive.

The historical use of the word is almost equally fascinating. At the beginning of the twentieth century, before the term became more common, it primarily described money and gold values ([7], p. 558). Although this usage has become almost obsolete and people today no longer associate hoarding with accumulating money or gold, it is essential to know that compulsive hoarding indeed reflects the idea of keeping a treasure. Especially from a psychoanalytical point of view, the root of the term, therefore, points to the unconscious deeper meaning of hoarding.

Another term often used in the context of compulsive hoarding is collecting. The practice of collecting, however, does not capture the suffering associated with hoarding and the complexity of these behavior patterns. Therefore, it is recommended to clearly distinguish the rather everyday practice of collecting from hoarding disorder.

Individuals affected by HD do not have collections; objects accumulate unintentionally.

The objects they hoard do not belong to a specific set of items, even though individual preferences may play a role. While some individuals tend to accumulate paper items, including books, magazines, or newspapers, others are more inclined to acquire technical devices. Such preferences, however, do not make hoarders collectors. Collectors follow a systematic approach, where they organize items according to specific criteria such as date or design. Hoarding, however, arises from the subjective urge and inability to give anything away . The verb to collect stems from the suffix col-, which originally meant together. The same applies to sammeln in German, which, based on the suffix sam-, refers to gathering objects together that are similar ([6], p. 783). Individuals with HD do not collect items in that they do not select and organize them deliberately, at least not in the traditional sense of collecting. Consequently, professionals recommend using the term hoarding in English and Horten as its German translation.

In the German-speaking literature, the phenomenon has primarily been translated as pathologisches Horten (pathological hoarding, hoarding disorder). In line with scientific discourse, I also preferably used the term throughout the German edition of this book. One should also note, however, that Messie-Phänomen (messy phenomenon), Messie-Syndrom (messy syndrome), and pathologisches Horten have evolved alongside each other and are to be understood synonymously. A standard translation of hoarding disorder is currently pending. At the time of writing this book, the German edition of the ICD-11 was still a work in progress. Some evidence suggests that the term will most likely be translated as pathologisches Horten. A translation as zwanghaftes Horten (compulsive hoarding) or Sammel- und Hortstörung (collecting and hoarding disorder) does not seem to sufficiently incorporate the psychodynamics of the phenomenon. These terms also do not account for the patients’ inability to discard objects. The term pathologisches Horten may not be ideal as it describes hoarding as pathological. However, it does help us take hoarding patterns more seriously and reduces the chance of belittling those who are affected or even fall into ignorance of their suffering.

Individuals with HD do not collect items in that they do not select and organize them deliberately, at least not in the traditional sense of collecting. Consequently, professionals recommend using the term hoarding in English and Horten as its German translation.

1.3 International State of Research

HD or compulsive hoarding has received tremendous media attention in recent years. Patients have written self-help books for other patients , and many guidebooks have circulated. Self-proclaimed hoarding experts have entered the picture and continue to shape widespread conceptions. This book is meant as a practical guide for professionals in the field. Relevant literature has been reviewed carefully in the preparation of this book, aiming to provide readers with a compilation of the most insightful findings made so far. This chapter gives an overview of the current state of research, as this is important for any serious discussion of the matter.

To give a holistic view of hoarding and its scientific discussion, I also look at how the disorder has developed in the Anglo-American world. What were the most significant developments and achievements of Anglo-American research in the field? What are the research interests of reputable international scientists? These and related questions shall be answered in the present section.

I would particularly like to draw attention to the Scientific Community, a group of interacting scientists active in the English-speaking world, particularly the USA. The work of this group clearly distinguishes itself from self-help counseling. It is how the disorder is displayed, which sets the scientific approach apart from the sensational and often repellent form of presentation adopted by popular science.

Whenever we speak of a new mental disorder, it is important to share new insights and knowledge worldwide, particularly diagnostic tools. It is vital that diagnoses follow uniform criteria, regardless of whether they are made in Austria, Texas, or India. The requirement for standard diagnostic systems and globally applicable treatment options was also one of the central reasons to create the ICD. A critical reflection on the underlying difficulties with such diagnostic manuals is presented in Sect. 2.​5.

In 1975, PubMed yielded the first-ever result for the search term hoarding. The article was titled Diogenes Syndrome: A Clinical Study of Gross Neglect in Old Age. With this first study dating back less than 50 years, hoarding research in its infancy.

In German-speaking countries, the Diogenes Syndrome was first mentioned by Joachim Klosterkötter and Uwe Henrik Peters. However, they only discussed the phenomenon in the context of geriatrics [3].

In 1987, the American Journal of Psychotherapy published the article Compulsive Hoarding [8]. In 1990, the article Hoarding as a Psychiatric Symptom [9] appeared in the Journal of Clinical Psychiatry. It was with this publication that the subject finally began to attract greater scientific interest. In the early 1990s, a few isolated discussions followed. By the mid-1990s, scientific interest had drastically increased to the extent that numerous psychological and psychiatric publications have been produced every year since.

However, German-speaking literature on hoarding has remained scarce. The most seminal German-language works are the following:

The work of Gisela Steins first focused on hoarding from a socio-psychological perspective . She introduced the concept of disorganization [5]. Renate Dettmering coined the term Vermüllungssyndrom, literally clutter syndrome. The psychiatric phenomenon she described was characterized by social isolation, cluttering as a form of relief and panic reactions to removing the clutter [2]. The Swiss Annina Wettstein first applied a cultural science approach to hoarding in 2005 [10].

In Messies—Sucht und Zwang, the psychoanalyst Rainer Rehberger presented several case studies demonstrating parallels between hoarding and obsessive-compulsive disorder as well as severe attachment problems in the histories of those affected [11]. In the meantime , Sigmund Freud University had applied an interdisciplinary approach to the subject. Their research combined psychotherapy and psychiatric results and later published them in the anthology Das Messie-Syndrom [1]. More recently, significant German-language contributions were made by the naturopath Veronika Schröter, who published her book Messie-Welten in 2017 [12] and by Katrin Külz and Ulrich Voderholzer with the 2018 [13] manual Pathologisches Horten.

The first known case of excessive hoarding became public in the late 1940s with the death of the Collyer brothers. Homer and Langley Collyer came from a wealthy and educated American family. The two became known for their eccentric lifestyle. They lived in seclusion and social isolation in their house in Harlem, New York City. The windows and doors were blocked and traps installed throughout the house. After their parents had died, the brothers continued to live in the house alone, completely shut off from the rest of the world. When someone reported the smell of decomposition emanating from the Collyer house, the police broke into the building and found the two brothers were dead. At first, they only found Homer Collyer, who had died of thirst. Days later, Langley, who had been nursing his sick and blind brother, was also found dead. The police reported that he had released one of his traps and been buried underneath debris. Following this discovery, the police removed over 100 tons of material from the house [14]. This first public case of hoarding was moving and shocking at the same time. It is this strangeness within others, the abnormal, that both attracts and repels us.

As I mentioned previously, the academic and scientific interest was sparked by the self-help movement. Clinical psychologists and psychiatrists have increasingly become interested in hoarding from the early 1990s onward. Remarkable work in the field is done by Randy Frost, Professor of Psychology at Smith College, Massachusetts; David Mataix-Cols, Professor and Psychologist at the Karolinska Institutet in Stockholm; David Tolin, Clinical Psychologist at Yale School of Medicine, Connecticut; and Jack Samuels, Associate Professor at Johns Hopkins University, Baltimore. Their research teams each must be acknowledged for their pioneering work in the field.

With his publication of The Hoarding of Possessions in [15], Randy Frost has laid the foundation for his research. His team has published several studies on the topic every year since. David Mataix-Cols has contributed several studies, particularly regarding the relevance of establishing hoarding as an independent disorder.

1.3.1 Relevance for Psychoanalysis

Reviewing the current literature on hoarding, one could get the impression that psychoanalysis does not provide answers or treatment options. Psychoanalysis almost seems to have fallen into oblivion in the face of global psychology or psychiatric research. The behavioral approach overshadows all other theories, apparently offering answers to any questions pertaining to the human psyche and mental illness. However, there are several studies that suggest otherwise, one being Diagnosis and Assessment of Hoarding Disorder [16]. It is one of the very few works that touch on the work of Sigmund Freud and Erich Fromm, even if just in their introduction. The research cites the anal triad formulated in Freud’s drive theory, pointing to its decisive role in theoretically conceptualizing obsessive-compulsive disorders.

The authors of Hoarding Versus Collecting also refer to Freud and Fromm:

In contrast to the theoretical conceptualizations of hoarding offered in previous work (Freud, Fromm), these operational criteria were intended to define the features that characterize hoarding at a pathological, rather than merely idiosyncratic, level. ([17], p. 167)

The theory of psychoanalysis is much more than the mere enumeration of idiosyncratic personality traits. Psychoanalytic models offer methods to gain an etiological understanding of psychological phenomena.

The normal originates in the pathological, yet at a stage of development when the pathological still forms a part of normal development.

Freud claims to have studied neuroses to develop a deeper understanding of psychoses. He regards psychoanalysis as providing the foundation for an understanding:

People are beginning to understand – best of all, perhaps, in America – that the psycho-analytic study of the neuroses is the only preparation for an understanding of the psychoses, and that psycho-analysis is destined to make possible a scientific psychiatry of the future which will not need to content itself with describing curious pictures and unintelligible sequences of events {…} ([18], p. 205 ff.)

Studying psychoanalytical work in relation to the pathogenesis of disorders and symptom formation yields numerous opportunities to explain and treat mental illness. It is striking that many of today’s assumptions and research results are rooted in psychoanalytical theories and concepts , which have postulated them early on. This is why, in this work, I generally cite the primary sources from which these psychoanalytical ideas and schools stem.

Initially, Anglo-American research groups regarded hoarding as a symptom of obsessive-compulsive disorder; only after several years of research did a more critical approach emerge. It can be assumed that this classification of hoarding under the broad umbrella of obsessive-compulsive disorders originated in the clinical setting. In the US, the first studies on hoarding were conducted at clinics with hundreds of patients already diagnosed with OCD previously. Sigmund Freud University has taken a more exploratory approach from the very onset of research. This approach attempted to experience, describe, and document the phenomenon as such. In other words, Austrian research into hoarding has developed from a psychoanalytical approach known from ethnopsychoanalysis. Students accompanied the university’s self-help group and enabled researchers to experience and observe patients unaffected by any previous hypotheses.

Sigmund Freud and later Béla Grunberger already postulated the unique role of doubt in obsessional neuroses. An extensive study with more than 1100 subjects confirmed this characteristic trait of obsessive-compulsive disorder (cf. [19]).

Thomas Maier has published the most recent scientific discussion of pathological hoarding in Switzerland. Citing the DSM-5 and the problem of defining hoarding patterns, the author explores the question of whether hoarding is a symptom or a syndrome. Maier examines the differences between the symptoms of pathological hoarding and obsessive-compulsive hoarding and concludes that hoarding is distinct in that it lacks the intrusive and ego-dystonic character [20].

According to psychoanalysis, the intrusive character of OCD arises from obsessive thoughts and actions. However, pathological hoarding reflects another aspect of OCD, namely that of being unable to discard or part with possessions. Therefore, the symptoms are neither intrusive nor ego-dystonic . International studies soon came to recognize the connection to obsessive-compulsive behavior. Tests demonstrated an overlap of patients with obsessive-compulsive disorder and those who exhibited symptoms of hoarding. Psychoanalytic models have associated hoarding symptoms with the spectrum of obsessive-compulsive disorder from the very beginning. This mutual agreement of scientific and clinical theories is remarkable.

There are very few studies on hoarding in child and adolescent psychiatry, yet there is evidence to suggest some compelling connections. Hoarding tendencies often become apparent as early as in childhood , meaning that they could be treated early on. The Canadian study Three Reasons Why Studying Hoarding in Children and Adolescents Is Important defends the need for early treatment. The authors argue that the symptoms of hoarding first appear in childhood and consequently develop chronically and persist into adulthood. Hoarding is also associated with a variety of negative experiences and consequences (see [21]).

When diagnosing children and adolescents, we have to remember that they repeat and intensify developmental phases. They are also just learning how to deal with their aggressive and sexual impulses, which often finds expression in untidy rooms and a resurgent pleasure in the anal, or the dirty. It is decisive for a child’s psychosexual development if this is just a phase, eventually completed successfully, or if parts of this behavior become chronic as an integral part of their personality. Problems related to this stage of development usually only become apparent when affected individuals move out of their parental home into a place that they have to take care of on their own. This is when pathological hoarding tendencies also become visible for the first time.

A study of 109 children diagnosed with anxiety disorder found that in 22% of the cases, the parents exhibited hoarding behavior. The participating children with an inclination to hoard also demonstrated higher scores regarding aggression, attention problems, fearfulness , obsessive-compulsive behavior, or symptoms of depression. The results suggested a clear connection between these behavior patterns and emotional dysfunction. In principle, it can be said that affected children exhibit not just one, but multiple patterns of abnormal behavior. Further research will be required to develop a more substantial picture of how anxiety disorder, attention deficit disorder, and pathological hoarding intersect (see [22]).

Psychoanalytic developmental science suggests that much