Last edited · 267 revisions  

 


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.  This disregards children's need for parents.

Children are not caregivers, supporters, or helpers, and cannot raise themselves.  

People with hoarding disorder need advocates, ambassadors, and effective treatments, and so do children and families. 

The obvious developmental needs of children have been disregarded for too long, fueling conflict, resentment, and retraumatization.

Psychoeducation can answer questions about confusing behaviors and create more realistic expectations, but the current emphasis on psychoeducating families to support people with HD often invalidates and retraumatizes children and adult children who survive trauma, abuse, and neglect.

Acknowledging the trauma of growing up in a hoard forces us to question this pervasive caregiving model.  

“Negative attitudes,” judgment, hostility, impatience arise from the harms people suffer, from damaging parenting and hoarding behaviors, not stigma, not a lack of patience, compassion, or understanding.    

Cycles of trauma and dysfunction are seen in many HD families.  

Defining children as caregivers for people with HD denies their need for parents.

Guilt-tripping families and shaming them for resentment with psychoeducation about HD, often further strains already damaged relationships and retraumatizes all involved.    

Children need independent advocates who are not compromised by a conflict of interest.  We don't tell rape survivors to support their rapist or make getting help dependent on anyone else.

Trauma care for children and HD relatives is long overdue.  

HD research does not address the needs of children and families.

Trauma assessments can meet people wherever they are, right now. 

We don’t need to reinvent the wheel, or lectures about supporting and understanding parents who do not reciprocate.

Children need trauma assessments, and direct services, not psychoeducation to help their parents, even if trying to save parents is where we all begin.

Genuine help for families must cultivate healthy, reciprocal relationships, with safe and appropriate physical and emotional boundaries, while recognizing the urgency of rapid developmental windows, and the priority of dependent children’s needs for care.  

Children need relief from squalor, biohazards, and some may also require protection from unsafe parents who endanger them.   

We don't need psychoeducation about hoarding disorder anymore than we'd need rehab for a parent's addiction.

Parents are the caregivers responsible for the safety, welfare, and nurture of their children, not the reverse.  

Children do not experience parents’ hoarding behaviors through the eyes of clinicians, researchers, and diagnostic criteria.  

Children experience parents through the necessary dependence, vulnerability, and asymmetry of the parent/child relationship.  Current paradigms only obscure our needs and redefine children and families as resources for someone else.

Attempts to alleviate caregiver burden will never address the misidentified trauma many children suffer growing up in hoards with parents who are impaired.

 This backward “caregiver” perspective parentifies children further, disregarding child maltreatment and ignoring children’s developmental needs.

Children must “accommodate” parents whom they depend on for survival.  Trauma bonding is not a choice.  

Ignoring trauma further endangers children and adds institutional betrayals, retraumatizing, victim blaming and scapegoating families imprisoned in unhealthy and often dangerous hoards and dysfunctional family systems.  

Raising a child in a squalor and disrepair clearly demonstrates parents' failure to meet the range of children’s emotional, physical, and developmental needs but professionals continue to demand compassion and understanding without showing any for those harmed labeling survivors "resentful" or "angry" instead.

Mental illness is on every list of the risk factors for child abuse and neglect.  

Nobody can be reduced to a diagnosis or behavior.  Abuse and neglect is not defined by motives or intentions, only actions.  

Naming abuse, neglect, trauma, and dysfunction accurately is essential for families to find remedies and never requires blame.  

Families need candor, accountability, health, and safety, not lectures on compassion, or psychoeducation while childhood trauma is ignored.

Many people with HD have insight, seek help, and are able to mitigate the impact of the disorder on others.

Some don't.  We can anticipate that children who grow up in hoards drowning in denial and invalidation experience trauma.   

Caregiver frameworks can retraumatize and exploit unhealthy role reversal, enmeshment, and further stress already damaged, dysfunctional family systems often characterized by multigenerational trauma.    

Nobody tells an incest 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 violent 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.  

Trauma assessments and awareness are critical to avoiding frequent retraumatization of HD relatives.

By contrast, the IOCDF tells us COHPs have a “kind of funny perspective growing up,” and offers coping tips like “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 look forward to new directions and hope to see child development and trauma specialists fill needs that hoarding professionals do not.  

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.  We need psychoeducation about trauma and resources to help ourselves not lectures on how to abandon our needs to help someone else.  

Advocacy for people with HD is great, but it is not help for families.  This conflict of interest only alienates families and deepens mistrust.

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.”

 

See also: Help for Children and Families and Complex/Childhood Trauma and C-PTSD for more information about childhood trauma and assessment tools to meet your needs.

 

We think trauma assessments are a better place to start.  

 

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 childhood 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 adds “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).  

Davidson, et al. reiterate that: "Families can be instrumental in supporting individuals with psychiatric illness or harmful (Steketee, 1993; Thompson- Hollands et al., 2014). Research suggests that families can be unsupportive of their relatives with HD, and that interventions targeting families can improve family members well-being and knowledge of HD (Chasson et al., 2014) but do not necessarily reduce hoarding symptoms (Thompson et al., 2017). Our results further demonstrate the association between family dysfunction and hoarding severity. Specifically, poor family competence (i.e., cohesion, organisation, communication and cooperative problem-solving) and greater family conflict were associated with more severe clutter volume and hoarding symptoms" (Davidson, 2020).

 

 

NCTSN Trauma informed assessments
 

 

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

Chabaud, 2020 A call for protection

Crawford, 2020 Animal hoarding and effects on children

Garrett, 2020 The Perspective of COHPs

Neziroglu, 2020 Impact in adult offspring

Davidson, 2020, Family and social Functioning