Research with HD Relatives
Over the last decade, studies have portrayed families as caregivers for people with hoarding disorder (HD). Caregiver frameworks and caregiver burden are common in mental health studies, but risk using people as resources for others, ignoring individual needs for health and safety. Reassigning children to the role of caregiver denies them the care they require and charges them with raising their parents instead. Reversing the roles between parent and child is widely recognized as abuse, stealing childhoods, and causing lifelong damage.
Trauma-informed care for HD families is long overdue. Children need trauma assessments, and direct services, not psychoeducation to help their parents.
Children need relief from squalor, safety hazards, and homes, and relationships, that do not serve their intended purpose. Ignoring trauma to recruit children as caregivers retraumatizes them while pretending to offer help and support, often painting children as lacking compassion, patience, and understanding for parents unable to meet children’s needs.
Safety must come first. Nobody tells a child sexual abuse survivor to be patient, that pedophilia is hard to change. We would not offer psychoeducation to better understand a rapist. We do not tell domestic violence survivors to work on the relationship. Mental illness is on every list of the risk factors for child abuse. Mental illness does not make anyone abuse a child.
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/
Research on HD relatives is in its infancy. We look forward to new directions that address the real needs of families instead of defining them as caregiving resources for the benefit of people with HD as well as psychoeducation about the developmental needs of children for parents with HD. Some noteworthy findings 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).
“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, emphasis added). 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 (Thompson, 2016, 70).
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