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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, filtering children’s experience through their parents’ disorder.  

Children are not caregivers and their developmental needs are being ignored.

People with hoarding disorder need advocates, ambassadors, and effective treatments, and so do children and families.  The needs of children and families are not understood, or prioritized, by researchers and clinicians focused on hoarding.

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.

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 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 care for HD relatives is long overdue.  

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

We don’t need more research or more psychoeducation to help someone else.  

And we don’t need to reinvent the wheel.

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

Prioritizing hoarding and the needs and perspectives of parents cannot heal families.

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.  

Attempts to alleviate caregiver burden through self-care, boundaries, and coping strategies may mitigate caregiver burden, but will never address the misidentified trauma may children suffer.

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.

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” and "enabling" is the requisite for survival, it is the inescapable condition of childhood dependence and vulnerability, when children are not allowed healthy boundaries by parents.   

Breaking the rules can come at the cost of complete rejection by a parent, or much worse.  

Ignoring trauma not only contributes to child endangerment, it layers institutional betrayals over childhood trauma, retraumatizing while adding victim blaming and compassion shaming, which is surely nobody’s desire or intent.  

Raising a child in a hoard clearly demonstrates a failure to meet the range of children’s emotional, physical, and developmental needs.  

Mental illness is on every list of the risk factors for child abuse.  Illness does not make anyone abuse a child.  People are not their behaviors, this is not a question of blame, simply recognizing the problem for what it is.

Many people with HD are able to mitigate the impact of the disorder on others.  Some can't or won't.  We can anticipate that children who grow up in hoards experience trauma, despite widespread professional tunnel vision and conflict of interest. 

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 others, and particularly developing children.  

Childhood trauma is a predictor of poor long-term health.  Reversing the roles between parent and child is widely recognized as abuse, causing lifelong harm in many kinds of dysfunctional families.  Caregiver frameworks can exploit unhealthy enmeshment and further stress dysfunctional family systems.  

Children do not exist to help, support, or understand parents.  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 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.  

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 specialists 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.

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 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).  

 

We think trauma assessments are a better place to start.

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