Research with HD Relatives
Over the last decade, studies have portrayed families as caregivers for people with hoarding disorder (HD). Healthcare studies commonly apply caregiver frameworks and notions of caregiver burden, but risk using people instrumentally as resources for others, ignoring individual needs for health and safety. Children's needs are being ignored for the benefit of their parents.
Research on HD relatives is in its infancy. People with hoarding disorder need advocates, ambassadors, and effective treatments, and so do children and families. The needs of children and families are not being met.
Psychoeducation can answer questions about confusing behaviors, create more realistic expectations, and improve coping skills, but the current emphasis on psychoeducating families to support people with HD does not meet their needs, or address their trauma.
Acknowledging trauma forces us to question this caregiving model. "Negative attitudes," judgment, hostility, impatience arise from the harms people suffer, not a lack of compassion and understanding. When children’s needs consistently go unmet, or are inconsistently met, childhood, developmental trauma can occur.
Hoards perpetuate trauma. We learn to parent from our parents and cycles of trauma are often seen in HD families.
Pressing families into the role of caregivers with psychoeducation about HD, without assessing the needs of all individual family members, may further strain already damaged relationships and retraumatize all involved.
Trauma-informed support for HD relatives is long overdue.
Children need trauma assessments, and direct services, not psychoeducation to help their parents, even if trying to save their parents is where the journey begins.
Genuine help for families must cultivate healthy, reciprocal relationships, with appropriate boundaries, while recognizing the urgency of rapid developmental windows and the priority of children's need for care. Children need relief from squalor, biohazards, and some may also require protection from unsafe parents who endanger them.
Parents are the caregivers responsible for the safety, welfare, and nurture of their children, not the reverse. Children’s needs must be normalized. Children can never successfully raise their parents and themselves.
Children do not experience parents’ hoarding behaviors through the eyes of clinicians, researchers, and diagnostic criteria. Children experience parents as a whole, through the necessary dependence, vulnerability, and asymmetry of the parent/child relationship.
Folding childhood trauma into ‘caregiver burden’ invalidates much of what COHPs experience. Attempts to alleviate caregiver burden through self-care, boundaries, and coping strategies may help, but they will not address unrecognized or misidentified trauma.
When parents are unable to fulfill their role, parentifying children is not an appropriate solution. This backward "caregiver" perspective disregards child maltreatment and ignores children's needs, frequently retraumatizing children, and exacerbating the hopelessness they face. It fuels the bottomless guilt and desperation to save their parents that children feel.
Children must "accommodate" parents whom they depend on for survival, often in all manner of destructive and unhealthy ways. This is not a choice. "Codependence" is the requisite for survival, it is the inescapable condition of childhood dependence and vulnerability. There can be no healthy dependence for a child upon unhealthy parents. Change for adult children can come at the cost of complete rejection. Ignoring trauma layers institutional betrayals over childhood, developmental trauma, retraumatizing while adding victim blaming and compassion shaming, which is surely nobody’s desire or intent.
A hoard is no place for a child.
Raising a child in a hoard clearly indicates a failure to meet the range of children's needs. Mental illness is on every list of the risk factors for child abuse. Illness does not make anyone abuse a child.
Many people with HD are able to mitigate the impact of the disorder on others. Some cannot. We can anticipate that children who grow up in hoards experience trauma, although children, their parents, clinicians, and researchers often appear largely unaware.
Childhood trauma is a predictor of poor long-term health. Reversing the roles between parent and child is widely recognized as abuse, stealing childhoods, and causing lifelong harm in many kinds of dysfunctional families. Caregiver frameworks can exploit unhealthy "codependency" and further stress dysfunctional family systems. It is time for a new paradigm.
Safety must come first.
Nobody tells a child sexual abuse survivor to be patient, that pedophilia is hard to change. We would not offer survivors psychoeducation to better understand and heal a rapist. We do not tell domestic violence survivors to work on unsafe relationships. Drunk drivers are subject to higher penalties for endangering a child, often despite substance abuse disorders. We automatically recognize animal hoarding as cruelty by definition, because otherwise we are talking about appropriate standards of care in a shelter, kennel, etc.
Hoarding disorder, itself, does not cause child maltreatment. The inability to manage the symptoms, the stress, and conflict the condition may create, as well as the consequences of a hoard, do harm cohabitants, and particularly developing children. Trauma assessments can help us meet people wherever they are.
By contrast, the IOCDF tells us: “Be aware that it is a disorder, but you do not need to suffer as a consequence. Know that hoarding behavior is hard to change. Do not force Change. Remember you do have a choice not to live in the clutter at some point.” https://hoarding.iocdf.org/for-families/how-hd-affects-families/
We all already know it is never so simple.
We look forward to new directions that address the needs of HD relatives instead of defining them as caregiving resources for the benefit of people with HD. We hope to see child development and trauma specialists meet some of these needs. Parents with HD need support and psychoeducation to better understand the developmental needs of children, and to meet them. Children need safe and healthy homes and caregivers who can meet their needs.
One COHP wrote: “The psychological experience of growing up a homeless orphan in an indoor landfill makes some kids believe their parents should never have had children and wish they'd never been born. Some adult children are so haunted by unrecognized, unresolved trauma they spend a lifetime wishing they were dead. No hoarding intervention is ever going to fix parents who don’t serve their intended purpose, heal childhood trauma, or mend a broken family.”
Some noteworthy findings from the research on HD relatives include:
HD is found to cause high levels of family rejection, equal or worse than schizophrenia (Tolin, 2008, 342), and caregiver burden exceeding Alzheimer’s (Drury, 2014, 12). Sampson notes negative feelings, a lack of compassion from family members, intense frustration and anger (Sampson, 2013, 393-395). Drury finds impaired social and emotional functioning equivalent to those diagnosed with HD, with perceived squalor found to be a significant predictor of impairment (Drury, 2014, 12). Park recognizes the “pernicious influence on family functioning” of poorer insight and increased hoarding severity, with no subjects falling within the range of healthy functioning (Park, 2014, 333). Substantial impairment of family functioning, damage to parent-child relationships, and impaired offspring functioning increase risk of mood and anxiety disorders (Park, 2013, 12).
Sampson notes “there are no professional services directly aimed at family members of persons who hoard” and highlights the “need for professional support for family members of persons who hoard, through the forms of psychoeducation and clinical training for working with this presenting problem in families” and clinical help for overcoming “feelings related to shame and embarrassment” not relief from trauma (Sampson 2014, 389, 391, 399). Recognizing hoarding is “a very dangerous problem and a public health issue,” Chasson proposes “Family as Motivators” training which can “decrease adverse impact of HD on the family” and “decrease the likelihood that family members trigger highly charged and dangerous or impairing behavioral incidents” (Chasson, 2014, 14-15).
Findings suggest “Clinicians working with compulsive hoarding may find it advantageous to work with the family by providing education about the harmful effects of such negative attitudes (e.g., by using cognitive strategies to reframe the patient’s behavior as manifestations of an illness rather than as a personality flaw or malicious behavior) and improving coping strategies among family members (Van Noppen & Steketee, 2003)” (Tolin, 2008, 342).
Noting trends across healthcare, Drury suggests “family interventions have been found to be cost-effective, to positively impact carer burden, and to promote readiness to continue providing care” (Drury, 2014, 12). Drury concludes “family members may also benefit from education and support to help them understand how best to support their relatives” and also “how to cope with the impact of hoarding on their own lives” (Drury, 2014, 13).
Wilbram, following work on OCD, understands accommodation as instances “whereby family members feel forced to collude with compulsive rituals” even when compliance was ensured by threats of violence (Wilbram, 2008, 60). Buscher notes that “it is not necessarily the needs of hoarders that pose a problem for mental health nurses as much as it is the needs of those family members affected by the hoarding” (Buscher, 2013, 497). Contrary to predictions, Thompson found psychoeducation did not improve caregiver distress, or caregiving burden but participants did show improved understanding of hoarding disorder and the group was well received by the 12 subjects in the study (Thompson, 2016, 70).
Perhaps the primary problem is not "caregiver distress"? Something is better than nothing but psychoeducation about hoarding disorder is not support for families.
Tolin, 2008 Family Burden
Wilbram, 2008 Carer perspectives
Thompkins, 2011 Harm Reduction
Sampson, 2013 Experience of Family
Vorstenbosch, 2013 Accommodation
Park, 2014 Family Functioning
Park, 2014 Parental hoarding
Chasson, 2014 Empowering families
Drury, 2014 Caregiver Burden
Buscher, 2014 Effects on families
Vorstenbosch, 2015 Accommodation
Thompson, 2016 psychoeducational intervention
Garrett, 2020 The Perspective of COHPs