An exploratory study on the lived experiences of hoarding in Singapore

1 INTRODUCTION

One of the earliest references to hoarding dates back to Dante Alighieri's The Inferno, where ‘hoarders’ and wasters were condemned to the fourth circle of hell and were doomed to roll heavy, weights against each other. Over the years this behavior has been referred to as Collyer Brother's syndrome, syllogomania, compulsive or pathological hoarding. It is only in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) that hoarding disorder was considered as a separate diagnostic entity (Mataix-Cols et al., 2010). Hoarding disorder is defined as an excessive acquisition of objects and persistent difficulty in discarding or parting with possessions regardless of their actual value, resulting in significant clutter and associated with distress or functional impairment (American Psychiatric Association (APA), 2013). The excessive accumulation and haphazard stacking of possessions not only restricts access to the homes of persons with hoarding but also increases the risk of falls, fire hazards, food contamination, social isolation and health risks (Ayers, Saxena, & Golshan, 2010; Pertusa et al., 2010) thus creating an unsafe environment for the person, their families and the community.

A recent meta-analysis estimated the prevalence of hoarding disorder to be 2.5% (Postlethwaite, Kellett, & Mataix-Cols, 2019). While not a highly prevalent disorder, there is considerable public awareness and focus on the problem, driven partly by the immense amount of media interest in the phenomenon (Everyday Health, 2014). Much of the research on hoarding has focused on the epidemiology, genetics, neurobiology and treatment of the disorder. Researchers have also studied the phenomenon from the perspective of the person with hoarding (Andersen, Raffin-Bouchal, & Marcy-Edwards, 2008; Cherrier & Ponnor, 2010; Kellet, Greenhalgh, Beail, & Ridgway, 2010; Taylor, Theiler, Nedeljkovic, & Moulding, 2019). These studies have identified emotional attachment to the possessions as a significant theme that cuts across ages and populations. Using an ethnographic approach, Andersen et al. (2008) concluded that older adults with hoarding found the act of acquisition to be reassuring and that their possessions helped them feel connected to others as well as their own personal history. The act of acquiring items made them feel productive and keeping possessions in their sight or arranging them the way they wanted gave them a sense of control. Using a combination of phenomenological interviews and documentaries, Cherrier and Ponnor (2010) identified three main motivational themes associated with the desire to accumulate things. These comprised an emotional connection to the past (memories, craftsmanship), an orientation towards the future (uncertain future, responsibility towards environment) and a day-to-day adventure (joy of finding and keeping objects). Kellett et al. (2010) using interpretative phenomenological analysis found that those with hoarding expressed a ‘sense of fusion in the relationship with hoarded items’. Roster (2015) examined case reports of people with hoarding provided by professional organisers using interpretive analysis and noted a pattern of hyper-attachment to possessions as they evoked good memories and also because they felt a sense of responsibility to the possessions. This strong emotional attachment leads to their inability to discard these items and the resultant clutter of living spaces. However, few studies have examined the impact of hoarding on families and communities or the efficacy of treatment and decluttering from the perspective of those with hoarding disorders (Gibson, 2015; Lucini, Monk, & Szlatenyi, 2009).

Singapore is a multi-ethnic island state situated in Southeast Asia, with a total population of approximately 5.5 million (Singapore Statistics, 2016). The Singapore Mental Health Study conducted in 2010 found that one in 50 community-dwelling residents displayed hoarding behaviour in Singapore (Subramaniam, Abdin, Vaingankar, Picco, & Chong, 2014), whereas a local study conducted among psychiatric outpatients established that 13.8% had met DSM-5 symptom criteria for hoarding disorder (Ong et al., 2016). The majority of Singapore's resident population, approximately 80%, live in dense public housing, which makes hoarding both a highly visible and poorly tolerated phenomenon. Families and neighbours of people with hoarding disorder face several adversities related to the behaviour such as encroachment of common areas, infestation by pests and fire hazard (Choo, Lee, & How, 2015).

Locally, there is a gap in the literature in terms of the personal narratives of individuals with hoarding disorder—the objects acquired, their relationship with the possession, the way they make sense of their behaviour, the impact of the disorder on themselves and others, experiences with decluttering and help-seeking. It is also acknowledged that while clinical features of hoarding disorder are similar, it is possible that ethnocultural differences may lead to differences in the phenomenology of the disorder (Shaeffer, 2012) indicating the need to study the disorder in diverse populations.

The aims of this study were to (a) examine the reasons for hoarding and reluctance to discard objects, (b) understand experiences and impact of decluttering and (c) discern the consequences of hoarding on self and others, from the perspective of individuals with lived experience of hoarding disorder.

2 METHODS

3 RESULTS

4 DISCUSSION

To the best of our knowledge, the current qualitative study is the first to explore the lived experiences of individuals with hoarding disorder in Singapore. The mean age of onset of hoarding behaviour in this study was 43.9 years, ranging from 12 years to 75 years. Our findings are similar to studies by Grisham, Frost, Steketee, Kim, and Hood (2006) and Fontenelle, Mendlowicz, Soares, and Viersiani (2004) who found an early age of onset (12 years and 13 years respectively) in clinical samples (Fontenelle et al., 2004; Grisham et al., 2006). The current exploratory study also found that the approximate onset of hoarding behaviour began earliest at the age of 12 years, but the associated problems and progression of hoarding symptoms occurred at a slightly later age. These findings are similar to a study conducted by Ayers et al. (2010) where the majority of individuals recalled that their hoarding behaviour started at an early age (around 10 years), and severity of hoarding symptoms increased steadily across the lifespan.

The variety of things collected by the participants in this study seemed to have little actual value such as old newspapers, magazines, receipts, clothes, discarded toys, cans and old electronic items. These commonly hoarded items were similar to those reported in studies from other countries (Chiu, Chong, & Lau, 2003; Grisham, Norbert, Williams, Certoma, & Kadib, 2010; Kellett et al., 2010). Some participants in our study also reported hoarding pets, and this created an unsafe and unsanitary environment for themselves as well as for the animals. However, most of them had difficulty discarding or parting with their possessions. The relationship that the person had with the saved items such as sentimental attachment, memories and the belief that the item is a work of craftsmanship, or had significant utility value made it extremely difficult for them to discard these possessions. These beliefs and emotions are similar to those reported in other studies. In the study by Cherrier and Ponnor (2010) those with hoarding behaviour described the saved items as an emotional link to the past, they were described as connections or memories to events, places or persons. They also saved items that were made with some craftsmanship and hence found it difficult to discard these items. Kellett et al. (2010) similarly describe complex relationships with the saved item like emotional attachment, memory and appraised utility value leading to avoidance of discard among people with hoarding. It has been suggested that the nature of beliefs which drive hoarding behaviour may have more to do with saving the things rather than difficulties discarding them. Participants in our study mentioned saving items as a heritage for the future generation and even as a means to avoid waste which is good for the environment. Interestingly, in the study by Cherrier and Ponnor (2010) informants similarly expressed a duty to keep things to avoid wastage.

The three homes visited by the researchers were cluttered and physical movement within the homes was not easy. When asked to describe the way they organised their saved items, most participants said that they stored their collected items on tables, kitchens tops, piled them up on the floor, or clustered them in a disorganised way, which obstructed their movement in their homes. Only two participants arranged the collected items in an organised way. Kellet et al. (2010) described clutter similarly, wherein the homes visited by the interviewers were extremely cluttered to the extent that they prevented the original use of the property. They observed that all surface spaces were over-utilised for storage purposes and moving within and between rooms was difficult due to the disorganised stacking of items.

The majority of participants reported a negative impact of hoarding behaviour on their lives, including impact on self, family/friends and community. Individuals with hoarding described quarrels with family members and even family members moving out of the house due to the inhabitable state of the homes. They felt disrespected and therefore often isolated themselves from by their family members. They also isolate themselves from friends and family because they are perceived as critical of their hoarding and pushing them to clean and discard, which results in their feeling disrespected (Holmes, Wolter, & Harris, 2014). A study by Garza and Landrum (2015) reported that hoarding might cause strained relationships as family members may perceive the phenomenon as ‘off-putting, repellant or disgusting’ and their desire to get rid of the hoarded items may be perceived as a rejection of self by the person with hoarding. Another possible reason for the disagreements could be the impact on family members outside of the house; family members may be embarrassed to invite friends to come over to their home for fear of judgement. Children of people with hoarding behaviors also suffer from bullying if others at school find out about their living environment (e.g. messy, unsafe and filled with things); thus it may be an embarrassment to let others visit their home (Tolin, Frost, Steketee, & Fitch, 2008). Furthermore, when family members of individuals with hoarding behaviour try to take charge of the hoarding situation such as to reduce the amount of clutter in the house, this leads to further strife and loss of relationships (Wilbram, Kellett, & Beail, 2008).

Additionally, hoarding can create an unsafe environment for habituation due to various reasons. For example the clutter can lead to increased risks of accidents especially for children who are trying to navigate their home, or when they can easily access dangerous items (e.g. chemicals) that should have been kept out of reach (Tolin, Meunier, Frost, & Steketee, 2010). Hoarding of items can be a fire hazard; research suggests that the clutter and the combustible nature of the hoarded items act as an enabling hazard promoting the growth of fire. The clutter may further block the exit routes and passageways thus impeding those trying to escape from a burning household resulting in fatalities (Lucini et al., 2009). Infestation and animal hoarding, on the other hand, render the house unfit for human habitation and impose significant health concerns for family members (Hoarding of Animals Research Consortium, 2002).

Consistent with previous research findings, this study showed that individuals with hoarding disorder tend to lack insight into the problems and consequences of their hoarding. Few of the participants had sought help on their own for their hoarding problems. Most of them were referred by family members of community-based agencies to seek treatment. Saxena, Brody, Maidment, and Baxter (2007) similarly found that those individuals with hoarding behaviour deny their illness, are indifferent to the consequences of their hoarding behaviours, have inflexible beliefs in relations to their possessions and show defensive reactions against change (Saxena et al., 2007). Bodryzlova and O'Connor (2018) also identified the lack of insight as a significant barrier to help-seeking and engagement in treatment. This study also found that participants experienced significant distress associated with decluttering, even when initiated by themselves. Distress and negative emotions like anger, worry, feeling wretched were expressed by all participants who had experienced decluttering by either family members or community-based agencies. Moreover, Frost, Hristova, Steketee, and Tolin (2013) found that due to considerable emotional attachment towards the hoarded items—these individuals were deeply affected by the community agencies, clinical team and family members involvement in the process of discarding the hoarded items (Frost et al., 2013). It is also possible that the focus on decluttering results in the dismissal of the emotional needs and concerns of the person, causing them significant psychological distress (Gibson, 2015).

Another interesting finding was the experience of traumatic life events described by the participants both during childhood and adult life. These participants talked about unexpected death, parental abuse and neglect and other traumatic life events. While some participants linked the event to their hoarding behaviours, others did not directly connect the two. Similarly, Grisham and colleagues found a significant association between hoarding behaviour and traumatic events wherein 55% of their sample reported experiencing a stressful life event at the onset of hoarding symptoms (Grisham et al., 2006). Hoarding behaviours may begin as a result of a stressful event that occurred in the past or an event in which they had trouble coping with, in which the symptoms first appear at the time of the event or shortly after the traumatic event (Tolin et al., 2010). Hence, the development of hoarding behaviour could be a result of a conditional emotional attachment to possessions and various thoughts and beliefs they have towards these possessions, for example they perceive that by protecting the processions, they are protecting themselves (Grisham et al., 2006). Besides that, Neave, Tyson, Mcinnes, and Hamilton (2016) also found that collecting or accumulating things filled the emotional void caused by the trauma and allowed individuals to avoid dealing with the pain (Neave et al., 2016). Interestingly, prior studies exploring correlates of hoarding disorder had found the onset of hoarding disorder to be associated with chronic stress and important life events (Morgado, Sousa, & Cerqueira, 2015; Shaw, Witcraft, & Timpano, 2016). Our study results emphasize the need for a comprehensive assessment of traumatic life events in individuals with hoarding disorder and treating the trauma with evidence-based therapies.

This study has some limitations. The study sample was largely Chinese; it is important to include more Malays and Indians to understand ethnic and culture-specific experiences. Nevertheless, we believe that the findings that have emerged from this study are important in enhancing the knowledge of hoarding disorder and its management in the Singaporean community. Diagnosis of hoarding disorder was based on the clinical judgement of psychiatrists and community workers, but the research team did not have access to medical records. Hence it is possible that some of the participants referred by community workers had clinically significant hoarding that was secondary to another psychiatric disorder. However, the detailed narratives seemed to indicate the onset of hoarding to be primary in nature though several participants reported that relationship problems and decluttering led to low moods and anxiety. Individuals with hoarding disorder may have been prone to describing more negative experiences with decluttering given the observable strain on them to take immediate actions to resolve the issues stemming from their hoarding as they had been identified by a clinical or community team as having hoarding disorder. Although we reached data saturation for important themes, the research would benefit from interviewing more diverse residents such as those living in private housing or those with animal hoarding to get a more comprehensive understanding of the situation and experiences in the community. In general, as this is a qualitative study and given the non-representative nature of the sample, these findings cannot be generalised to all individuals who hoard in the community.

Despite these limitations, our qualitative study conducted among a community sample of individuals with hoarding disorder has considerable strengths. Interviews lasted for at least 1-hr, were conducted in local languages, conducted in venues chosen by the participant and confidentiality was assured. These strategies resulted in prolonged and meaningful engagement of the participants. The researchers who were trained in qualitative methodologies and from different disciplines (including psychiatry, psychology and social work), analysed the data and discussed the themes ensuring investigator triangulation. The authors maintained careful audit trails for decisions made during data analysis and reporting of results. Key themes identified in the study are consistent with the literature on studies on hoarding which have been done mainly with Anglo-Saxon participants. Common themes such as relationship with the hoarded object, difficulty discarding, distress associated with decluttering and experiencing traumatic life events indicate that the experience of hoarding transcends cultural boundaries to a great extent. Additionally, the detailed description of the context of the study, sample (size, socio-demographic characteristics), interview procedures and interview guide ensure the transferability of the results.

The study has important implications for both future research and practice. Themes identified in this study mapped well to the DSM-5 criteria of hoarding and resonated with studies done in other populations. Participants endorsed difficulty in discarding, need to save items, cluttered living spaces and the impact of the behaviour on self and others. The only difference that the researchers could identify was that the acquisition of items was mainly through collecting free items either from rubbish bins or getting it from others. Few participants endorsed buying items as a form of acquisition.

Participants stated that they had been in contact with health or social services for problems related to their hoarding behaviours, but almost all of them were unable to describe what aspects of the treatment/interventions were helpful to them. This may be due to their lack of insight as most of them did not perceive their hoarding as a problem or insisted that they were capable of managing the problem on their own. Considering the salience of traumatic life events in participants’ narratives and the existing evidence on the association between hoarding disorder and traumatic life events; inclusion of a comprehensive assessment of trauma and relevant therapy would be highly beneficial as part of the treatment plan for individuals with hoarding behaviour. Engagement of the person with hoarding by peers and delivery of therapy in the community setting to encourage decluttering also needs to be studied further (Mathews et al., 2018). Additionally, raising awareness about hoarding behaviour among other community services and teams working with vulnerable groups such as the elderly, low-income residents and the desolate is necessary to identify residents with possible hoarding tendencies that can enable early intervention. It is also necessary to plan public outreach and targeted anti-stigma messages to reach out to and encourage early help-seeking among those with hoarding.

CONFLICT OF INTEREST

None.