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Research on HD Relatives


 

For over a decade, studies have portrayed families as caregivers for people with hoarding disorder (HD).  This is not unique.  Healthcare studies commonly apply caregiver frameworks and notions of caregiver burden.  

This disregards children's need for parents.

It also disregards consistent findings of family dysfunction and impairment in HD families, and with untreated mental illness in general.

Mental illness is on every list of the risk factors for child abuse and neglect and the impact of parental mental illness is already well documented, as are children's developmental needs.

Children are not caregivers, supporters, or helpers, and cannot raise themselves, or treat their parents' mental illness.  

A longterm and consistent pattern of institutional betrayal by hoarding researchers, clinicians, and advocates has alienated children and families and destroyed trust and good will.

Ignoring the impact of family dysfunction, trauma, child abuse, and neglect cannot help families.

Of course family rejection exceeds schizophrenia and caregiver burden exceeds Alzheimer's when the so called "caregivers" are childhood trauma survivors buried in trauma and dysfunction.

When children are seeking help, misdirecting them to help someone else is the epitome of institutional betrayal. 

The developmental needs of children have been disregarded by HD researchers and professionals for too long, fueling conflict and resentment.  

Research on HD relatives is motivated to serve people with hoarding disorder, not to help children and families.   

And it is far from neutral or objective.  

It is riddled with assumptions and judgments and blame shifting, and it is premised on making children the caregivers for their parents while ignoring childhood trauma survivors to extract more caregiving from them.

We think the self-proclaimed experts should know better.

Blatant physical abuse and neglect is distinct from the obviously impaired parenting that allows a parent (or a mental health professional!) to minimize depriving children of the basic necessities of life, a safe and healthy shelter, nourishment, sanitation, nurture and care amidst crushing, suffocating, often molding, rotting excess.  

“Negative attitudes,” judgment, hostility, impatience arise from the abuse and neglect children suffer, from damaging parenting and hoarding behaviors, not stigma, not a lack of patience, compassion, or understanding for mental illness.  

Redefining children as "caregivers" retraumatizes parentified children, and capitalizes on misplaced guilt and responsibility, adding institutional betrayal and victim blaming to often dangerous hoards, dysfunctional family systems, and frequently serious mental illness.  

"Experts" in hazmat suits labeling enmeshed trauma survivors "difficult," "negative," "resentful," "angry," "unhelpful," and "unsupportive" earn mistrust, alienate, and retraumatize.

People with hoarding disorder need advocates, ambassadors, and effective treatments.

So do children and families.

Children need independent advocates who are not compromised by bias, tunnel vision, and conflict of interest.  

Childhood trauma survivors (CTS) need resources and support.  Period.  

We do not need psychoeducation to benefit our parents.

We do not need help for the public good.

Children need safe and healthy homes and parents who can meet their physical, emotional, and developmental needs because they are children.

 

Health and safety must come first

 

Anger, resentment, frustration are normal responses to child abuse and neglect.  

Anger is also a quintessential stage of grief.

Anger, frustration, and resentment are perfectly appropriate responses to institutional betrayal by hoarding professionals shaming children for lacking compassion and admonishing them to help, or understand, someone hurting them while ignoring their needs.  

Mental illness does not make child abuse and neglect anything but child abuse and neglect.  

Addiction does not make child abuse anything but child abuse.  

Munchausen by Proxy does not make child abuse anything but child abuse.

Hoarding disorder does not make child abuse anything but child abuse, either.

Malice has nothing to do with definitions of child abuse or neglect.  

Child abuse and neglect (CAN) is not defined by any motive or intention, only actions and inactions.  Love does not guarantee mental health, healthy parenting, or coping skills.

Imprisoning children in squalor, secrets, shame, disrepair and depriving them of basic necessities, safe food, shelter, and care is child abuse and neglect.  Motives and intentions are not relevant to definitions of abuse.    

CDC Definitions

Childwelfare.gov Definitions

 

It is time to change the conversation

 

Dependent children do not define, or damage, the relationship with their parents.

Trauma bonding is not a choice.  

Children must bond with the caregivers they depend on for survival.  

Raising a child in chaos, squalor, and disrepair fails to meet the range of children’s emotional, physical, and developmental needs.

Trauma care for children and HD relatives is long overdue.  

Trauma assessments can meet everyone wherever they are, right now, and empower them to heal. 

Mental illness never forces anyone to abuse or neglect a child.  People with HD come in all shapes and sizes, just like everybody else.   

It is impossible to psychoeducate family dysfunction and trauma away.  

Nobody can clean or declutter mental illness away, either.  A sober alcoholic is still a dry drunk.  

Naming abuse, neglect, trauma, and dysfunction accurately is essential for families seeking health and safety.  Nobody can break cycles of trauma HD professionals deny.

Naming childhood trauma, abuse, and neglect never requires blame.  

 

We don’t need to reinvent the wheel

 

Children need trauma assessments, and direct services, not psychoeducation to help someone else, and not more obfuscating research redefining child abuse, neglect, and trauma as "caregiver burden" or "ambiguous loss."

The impact of parental mental illness on developing children is already established, as is the impact of chronic childhood abuse and neglect.

Family approaches must be attuned to children's developmental needs, the asymmetry between parents and dependent children, and the trauma that delusions, denial, invalidation, hoardsplaining, gaslighting, and grooming cause developing children, on top of growing up in shame, secrets, squalor, biohazards, and danger.

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.   

Healthy adult relationships are reciprocal.  Parents are the caregivers, not dependent children.

The one-sided effort to psychoeducate children and families to provide more caregiving, support, and understanding has destroyed trust and good will.

Imagine the IOCDF told incest survivors to be patient, that pedophilia is a disorder, and hard to change, but "you don't have to suffer as a consequence"?  And then told you to validate your own feelings. 

Drunk drivers are subject to higher penalties for endangering children, often despite substance abuse disorders.  

We automatically recognize animal hoarding as cruelty, by definition, because otherwise we are talking about appropriate levels of care in a rescue, kennel, etc.

But hoarded children are are scolded as "negative," "angry," "unsupportive," and "lacking compassion" in the face of the same abuse.    

We know your feelings are complicated and conflicted and that is entirely appropriate when love is entangled with abuse.  Love cannot guarantee mental health or parents able to meet children's needs.

You can break the cycle.  You can learn healthy ways to cope with the misplaced shame, guilt, and responsibility.

We believe trauma assessments and awareness are critical to reducing further retraumatization of HD relatives, and allowing everyone to make more informed choices where good options are scarce. 

It is never healthy to sacrifice your safety and well being for theirs, no matter how much you love them, no matter how much they harm or endanger themselves. 

Your parents needs and feelings are never more important than yours.

By contrast, the "experts" at IOCDF tell us COHPs have a “kind of funny perspective growing up,” and offer 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/.

 

The future is ours

 

We look forward to new directions and hope to see child development and trauma specialists meet needs that hoarding professionals do not.  

The needs of all individual family members must first be assessed, and addressed, starting with children living in unsafe, unsanitary hoards, at the mercy of parents with untreated mental illness.

Parents with HD, and spouses, need support and psychoeducation to better understand the developmental needs of children, and to meet them.  

Children need accountability, candor, reciprocity, safe and healthy homes, and parents who can meet their basic physical, emotional, and developmental needs.  

Survivors need psychoeducation about childhood trauma, family dysfunction, healthy boundaries and relationships, and trauma resources to help ourselves.  

Advocacy for people with HD is great, but it is not help for families.  

Ask the experts in childhood trauma, instead.

 

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 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).  

Threats of violence?

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).

Rees notes: "All participants reported that their parents had never been open to obtaining assistance for their hoarding difficulties. Many offered explanations for this, including embarrassment, lack of insight, and isolation. A minority of participants reported on some occasions their parent had asked for assistance from themselves or other family members, however attempts to help were met with resistance and sabotage. Likewise, a number of participants also reported various attempts to help their parents over the years (both openly and secretively) that they perceived were often unsuccessful and not appreciated. Consequently, participants often spoke of their perceived lack of acknowledgement and denial in their parents about the presence or extent of the hoarding issues" (Rees, 2017, 332).  

And once again, providing resources to children prioritizes the benefit to parents who hoard: "Provision of these resources may enable adult offspring of those with hoarding issues to better understand their parents’ difficulties (such as reasons pertaining to treatment refusal, continued acquisition, and lack of disposal), provide information as to how to effectively assist their parents such as the harm reduction method proposed in Tompkins & Hartl, 2009), in addition to providing them with tools for effectively managing and coping with their own reactions and relationship difficulties" (Rees, 2017, 334).

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).

It is time for a new conversation.  

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.

 

 
 
 

 

Tolin, 2008 Family Burden

Wilbram, 2008 Carer perspectives

Thompkins, 2011 Harm Reduction

Sampson, 2013 Experience of Family

Vorstenbosch, 2013 Family Accommodation in Hoarding

Park, 2014 Family Functioning

Park, 2014 Parental hoarding

Chasson, 2014 Empowering families

Drury, 2014 Caregiver Burden

Buscher, 2014 Effects on families

Vorstenbosch, 2015 Family Accommodation in Problem Hoarding

Thompson, 2016 Psychoeducational intervention

Rees, 2017, Parental Hoarding

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

Chen, 2022 Interpersonal functioning in hoarding

Guzick, Storch, Chabaud, Garrett 2022, Anxiety, depression, and rejection towards parents

 

 

 

Photo by Gaelle Marcel on Unsplash