Adult-Children of Hoarders - Adul… · 5/10/2012 1 Adult-Children of Hoarders: The Lifetime...

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Adult-Children of Hoarders:

The Lifetime Effects of Having Hoarding Parents

Suzanne A Chabaud, PhD with Cecilia Garrett

Chabaud, S., Adult-Children of Hoarders, 2012

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Chabaud, S., Adult-Children of Hoarders, 2012 2

Sample Recruitment: Adults who Grew up in Hoarded Homes

THROUGH: A&E Website

Children of Hoarders Matt Paxton, Extreme Clutter

OCD Institute of GNO Psychiatric Times

ABC 20/20 Multiple Choice, Rating Scales, and Text Responses to Online

Survey Signed Consent = 793

Q1 = 678 Q205 = 187

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ACOH - Subject Stats

• Of 675 subject, 88% were female and 12% were male.

• Sample included people from 18-69, but 90% of sample was between 22 and 54 years of age.

• 92% endorsed Caucasian ethnicity.

• Only 13% didn’t complete more than a high school education.

• 87% were raised in a single family residence, and 85% of the parents were home owners.


HOUSEHOLD INCOME

SUBJECTS

PARENTS 2010

census

0-25K 17.0% 24.2% 24.9%

25K TO 50K 26.4% 33.1% 25.0%

50K TO -75K 23.8% 24.6% 18.3%

75K-100K 13.2% 10.2% 11.8%

100K AND MORE 19.6% 7.9% 19.9%


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EDUCATIONAL LEVEL 2011 US CENSUS PARENT SUBJECT

PERCENTAGES

Bachelor’s Degree 30.44 21.7 34.9

Master’s degree 10.95 17.8 16.3

Doctorate degree 3.00 3.9 5.6

BACHELOR-DOCTORATE (white women)

29.7 56.8


CURRENT MARITAL STATUS (N= 671)

MARITAL STATUS OUR SUBJECTS

MARRIED/SIGNIFICANT PARTNERSHIP

58.5%

SINGLE/NEVER MARRIED 27.5%

DIVORCED 11.6%

WIDOWED 2.4%

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NEVER MARRIED OR DIVORCED (AGES 30-54), SUBJECT N =450

SINGLE/ NEVER MARRIED DIVORCED (Currently)

SUBJECTS 17.6%

SUBJECTS 12.7%

2010 CENSUS 16.6%

2010 US CENSUS 13.3%

Based on white, non-Hispanic, women



AGE FIRST MARRIED OR ESTABLISHED SIGNIFICANT PARTNERSHIP AT 29 OR YOUNGER

SUBJECTS WHO ARE 29 AND YOUNGER

SUBJECTS OF ALL AGES

DIFFERENCE

36% 87%* 51%

OUR YOUNGER SUBJECTS ARE WAITING LONGER MUCH LONGER THAN OLDER SUBJECTS TO GET MARRIED OR DEVELOP A SIGNIFICANT PARTNERSHIP. *OF THESE 87%, HALF ENTERED MARRIAGE OR SIGNIFICANT PARTNERSHIP BEFORE AGE 21, AND UNDER 10% NEVER LEGALLY MARRIED.

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SUBJECTS WHO WERE CHILDLESS

AGE NO CHILDREN Total N

30-34 54.40% 125

35-39 47.47% 99

40-44 42.72% 103

45-49 30.77% 65

50-54 32.76% 58

55-59* 15.6% 32

*Seems to be a cohort shift starting at age 55


PEOPLE WHO WERE CHILDLESS

SUBJECTS (AGE 30-59), MOSTLY WHITE N=450

MARRIED/SIGN Relation

DIVORCED ANY MARITAL STATUS

NO CHILD 36.9% 52.9% 44.0%

People 40-44, white Non-Hispanic, Any Marital Status, N=103

No Children

SUBJECTS US CENSUS 2008

Any Education 42.7% (n = 44/103) 17.9%

BACHELOR DEGREE 37.21% (n = 16/43) 22.8

POST GRADUATE DEGREE 64.00% (n = 16/25) 21.5

10 Chabaud, S., Adult-Children of Hoarders, 2012

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PARENTING

PARENTING STYLE OF SELF

N = 111 (could pick more than one) • AFFECTIONATE 71.2% • TOO CLOSE 7.2% • DISTANT 5.4% • PROTECTIVE 62.2% • STRICT 33.3% • PERMISSIVE 27.9% • ENGAGED 64.0% • UNDER ENGAGED 12.6%

SUBJECTS’ PARENTS

N = 364

• POOR 40.4%

• Adequate 31.9%

• Good 13.5%

• Very Good 10.2%

• Excellent 4.1%



SPACE TO DO THINGS IN HOME YES

CHILDHOOD HOME N=207, OWN=205 CHILDHOOD OWN HOME

Private space to sleep

59.4% 97.1%

Personal activities like study and

hobbies 31.3% 91.2%

Personal care like bathing,

dressing 62.8% 98.5%

Private communications 35.9% 94.2%

Independent activities 43.7% 95.1%

Play/recreation/hobbies 37.7% 94.1%

Healthy shared family activities 17.8% 90.2%

Meals 36.7% 87.8%

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Which Caretaker Hoarded the Most? N=406 (THE PRIMARY HOARDER)

CARETAKER Percent

Mother 79.8%

Father 16.5%

Grandmother-Maternal 2.2%

Each other grandparents or stepparent BELOW 1%



TO WHOM DID SUBJECT FEEL THE CLOSEST OR MOST DISTANT WHILE GROWING UP?

N = 203 CLOSEST MOST DISTANT

Mother - HOARDER 28.6% 35.0%

Father - NONHOARDER 17.5% 21.7%

Father HOARDER 5.3% 14.8%

Mother – NON-HOARDER 4.8% 3.4%

Sibling - OLDER 14.8% 12.3%

Sibling - YOUNGER 28.0% 10.8%

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MOSTLY CLOSE OR OVERLY DISTANT NOW?

FAMILY RELATION OVERLY CLOSE

OVERLY DISTANT

TOTAL N = 185

Hoarding parent 1 19.0% 81.0% 174

Hoarding parent 2 14.6% 85.4% 41

Non-hoarding parent 19.3% 80.7% 109

Sibling 1 26.1% 73.9% 138

Sibling 2 16.7% 83.3% 78

Sibling 3 26.3% 73.7% 38

Sibling 4 16.7% 83.3% 18

Sibling 5 0% 100% 8


Abuse/Harm in the childhood home


A majority of the adult-children reported occurrences of physical, sexual, verbal, and emotional harm/abuse and/or neglect in their childhood home. “I was always the brunt of my mother's moods--depression, anger, physical rage (although she didn't physically abuse me, she broke lots of things and several times I was confident she was going to kill us in a car accident). Either Mom was super cool, or super scary, and I couldn't always tell which I was going to encounter next. I learned to parent her, taking care of her needs and trying to put off my own.” “Verbal and Physical. My mom would call me names and tell me I was ugly etc. She would be very angry without an obvious reason (to me). She would slap me in the face, sometimes she would pretend to hit and if I would duck she would laugh hysterically at me fear. When I was 16 years old she slapped my so hard that my ear buzzed for 2 days.”

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Mental Health of Primary Hoarder Parent

H NEAT ADHD OCD ADDICT DEP Social PD GAD Other

M 100 0.9 7.5 10.3 11.8 59.9 10.6 16.2 12.7 17.7

F 100 1.6 3.2 25.8 24.2 32.3 14.5 17.7 4.8 14.5


Mother hoards and both parents hoard

Father hoards and both parents hoard

Mother hoards and is primary hoarder

Father hoards and is primary hoarder

Mother hoards, but Father doesn’t

Father hoards, but Mother doesn’t

74/405 74/133 322/405 62/133 331/405 59/133

18.41% 55.64% 79.51% 46.62% 81.73% 44.36%

• Of all hoarder parents (n= 538), 405 are mothers (74.28%) and 133 are fathers (24.72%).

• Mother Hoarding is less dependent on a partner who hoards (18.41%) than is Father Hoarding (55.64%). That is, if a man who hoards, he is more likely to have a wife who hoards (55.64%) than a woman who hoards is likely to have a husband who hoards (18.41%).

• Also if a person is a hoarder, a woman is more likely the primary hoarder (79.51%) than is a man (46.62%).

• When a hoarder hoards alone (the spouse does not hoard), the hoarder is more likely a woman (81.73%), than a man (44.36%).


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Grandparents’ Mental By Primary Hoarder


Parents of Primary Hoarder Mother

N=322 Hoard NEAT ADHD OCD Addict Depress Social PD GAD Other None

Her

Mother 18.01 13.98 0.00 5.28 7.45 14.29 3.42 4.35 4.97 8.70 25.78

Her

Father 8.39 4.04 0.31 0.62 11.49 4.04 0.62 5.59 0.62 7.45 36.65

Parents of Primary Hoarder Father

N=62 Hoard Neat ADHD OCD Addict Depress Social PD GAD Other None

His

Mother 22.58 1.61 1.61 16.13 4.84 17.74 9.68 11.29 3.23 3.23 4.84

His

Father 14.52 0.00 1.61 4.84 12.90 16.13 0.00 4.84 1.61 11.29 1.61

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SUBJECTS’ MENTAL CONDITIONS N=413

Mood Disorders 66.8%

Anxiety Disorders 64.4%

NONE 17.4%

Childhood Disorders 4.4%

Substance Abuse Disorders 3.1%

Eating Disorders 2.9%

Sleep Disorders 1.7%

Hoarding 1.5% Schizophrenia/Psychotic Disorders 0.9%

Sexual/Gender Disorders 0.7%

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WHEN DID THEY REALIZED HOUSE WAS HOARDED?

AGE 6 OR YOUNGER 12%

Ages 7-9 31%

Ages 10-12 29%

Ages 13-16 13%

AGE 17 OR OLDER 15%

What made being in the home most difficult?


“Not being able to change it. Seeing how huge a toll it took on my family and not being able to fix it. I am the problem solver within my group of friends and I think that a large part of that is because no problem I hear is ever as big as the one I grew up with so I can fix whatever a friend needs me to.” “Having multiple rooms of the house being unusable. The lack of privacy. The crushing shame when I compared my house to my friends' houses.” “There was no where to feel clean and comfortable. emotionally feeling like my parents disliked me and that i was making life even worse for them.”

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When did you realize it was hoarded?


“I probably only realized that the house was a problem in the last year that we lived in our town, when I was 8 or 9. I remember my grandmother coming over to help me with the dishes, which were filthy and all over the place. I felt embarrassed, as if it were my fault. My mother had already started to make these undone tasks "mine", so of course I felt responsible.” “I didn't really realize just how crazy things were until I got out. We were totally un-socialized. None of us had any real friends, and no one could come into the house. I still struggle socially with how to talk to people and make myself understood. That feeling of not blending in, of there being a big sign over your head that says you were raised in a very bad borderline crazy situation. It got much much worse when I moved out.” “I realized something was different when I spent the night at my dad's house and couldn't wear the clothes I had packed for the next day because they smelled so badly. I guess living in it, you don't realize the strength of the odor until you are removed from it.”

CLUTTER RATING SCALE1

• Subjects rated three rooms in their hoarding parents’ home, bedroom, living room and kitchen.

• Ratings were across the subjects’ life span and while they lived in the hoarded home.

• Ratings could range between 1 and 9, with 9 being the most severe.

• In tables, notice that ratings were collapsed into three categories: 1-3, 4-6, and 7-9.

• Pattern: % of ratings decrease in 1-3 and shift to higher clutter categories.

• When subjects are in their 60s, ratings drop substantially


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AVERAGE RANGE OF CLUTTER SEVERITY

while living in house across all ages


CLUTTER RATING

ROOM %1-3 %4-5 %7-9

Living Room

N=428 40.54 40.63 18.83

Bedroom

N=425 35.71 42.77 21.52

Kitchen

N= 431 46.84 36.82 16.34

Kitchen Clutter Rating Age is the years that you lived in the home

Age Range %1-3 % 4-6 %7-9 Total N

0-10 69.6 24.8 5.6 395

11-20 40.5 43.7 15.8 380

21-30 28.3 52.4 19.4 191

31-40 28.0 32.9 39.0 82

41-50 25.7 25.7 48.6 35

51-60 6.3 31.3 62.5 16

61-70 33.3 33.3 33.3 9


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Bedroom Clutter Rating Age is the years that you lived in the home

Age Range %1-3 % 4-6 % 7-9 Total N

0-10 58.5 31.9 9.5 398

11-20 28.3 53.0 18.7 385

21-30 16.5 52.1 31.4 194

31-40 16.9 36.1 47.0 83

41-50 20.0 31.4 48.6 35

51-60 6.3 25.0 68.8 16

61-70 44.4 22.2 33.3 9


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Living Room Clutter Rating Age is the years that you lived in the home

Age Range 1-3 % 4-6 % 7-9% Total N

0-10 64.2 28.7 7.1 397

11-20 33.2 49.3 17.4 379

21-30 20.3 53.6 26.0 192

31-40 22.0 35.4 42.7 82

41-50 22.9 25.7 51.4 35

51-60 6.3 37.5 56.3 16

61-70 33.3 33.3 33.3 9


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Dealing with a lifetime hoard.

• I’m afraid my mom is going to die and we will not know or we cannot get an ambulance to her and I’m scared because now they wont allow me to speak to them since I confronted this issue and told them this is hoarding they have called me names and threatened us if something or someone comes there to their home. Its bizarre and I am pretty sure my mom will die in the home soon if we cannot fix this.

• My parents have 14 grandchildren. None of them ever come over and spend time at my parent's house--they only see their grandparents at their own house. Most of their grandchildren/in-laws have either never set foot in the house or have only been in the living room/entryway of the house (like my husband). I know when my parents die, we will have to have a huge undertaking to clear the house. We'll probably rent several dumpsters.

• My Brother's life is being thrown away taking care of mom. He works 50+ hours a week to support her. She refuses to support herself. He barely has friends over and has never had a serious relationship etc. When he was 21 he started fully supporting her and continues to do so. He has no savings, now the house he bought is falling into ill repair, his property is being destroyed and cluttered up by her stuff etc. He is starting to get health problems from working 50+hours in heavy labor for so long. He has no extra money for health or dental care.


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EXAMPLES OF LEAVING


“I plotted and planned to run away. But ultimately, I was too afraid. I also attempted suicide twice...but was not even remotely successful. I wanted out more than anything, but I feared the anger of my mother if I failed and she found out.” “As stated above moved out at 13 and married at 15 to get out of the situation.” “I graduated early and moved out of state to go to college ...where I could control my own environment and do things my way.” “Went and lived in a caravan with my older sister so that we could attend college 12 miles away from family home.” “My brother was too young to survive without me. When I finally left I felt terrible and tried to get custody of him when I was 20 - as soon as I married.” “I knew that if I got pregnant, I could live in a home for unwed parents and would not have to live with either one of my parents. When I was 16, I became pregnant. My future mother in law was able to get custody of me then after I reported my mother to CPS for physical abuse. CPS never entered the home or had any idea of the condition of the home.”


INSIGHT SCALE2, 3

EXCELLLENT Fully rational. Hoarding behaviors may be bad, but hoarder fully recognizes that they are a problem.

GOOD Hoarder readily acknowledges that his/her acquisition, clutter and/or difficulty discarding is a problem. However, when at home or out shopping/acquiring, hoarder has difficulty seeing the problem with acquiring or not discarding items.

FAIR Hoarder may admit clutter is a problem, but only reluctantly admits that his/her behavior (such as acquiring too many things, or failing to discard things) has caused the problem. When at home or out shopping/acquiring. Hoarder has difficulty seeing that he/she has a problem with acquiring or not discarding things.

POOR Hoarder maintains that acquisition, difficulty discarding, and clutter are under control or not a problem. When someone discusses the problem with him/her, hoarder acknowledges that he/she might have a problem, but still underestimates the severity of the problem.

LACKS INSIGHT/DELUSIONAL Hoarder is convinced that he/she has no problems with acquisition, clutter or difficulty discarding at all. He/she will argue that there is no problem, despite contrary evidence or arguments.

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SUBJECTS’ PERCEPTION OF PRIMARY HOARDER PARENTS’ INSIGHT

INSIGHT LEVEL MOTHER

N=321 FATHER

N=67

EXCELLLENT 2.80% 1.49%

GOOD 9.97% 1.49%

FAIR 23.36 16.42%

POOR 30.22% 26.87%

LACKS INSIGHT/DELUSIONAL 33.64% 53.73%

66.7% OF 388 SUBJECTS RATED PARENT AS LACKING INSIGHT/DELUSIONAL

PERCEPTION OF PARENT’S INSIGHT INTO HOARDING BEHAVIOR


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Why did you give up?


“I was brainwashed into saving her and spent all my paychecks on trying to fix her house, not realizing that she was using me and/or she wasn't open to help or change so nothing I did was really going to help her.” “Her very first trip to my new house, in a town of less than 4000, and she managed with 45 minutes to find the thrift store. Not A Joke. That was pretty much the final straw.”

Relationship with hoarding parent

• Subjects varied in attitudes toward hoarding parent; many developed very negative feeling, including worry, hopelessness, and apathy.

• Many suffered parental rejection, often severe, everytime they tried to address the hoarding.

• Most felt that their parent valued objects more than their family. • Many realized that there was nothing to be gained in a relationship with the

hoarder parent. Diminished opportunities for a relationship with the non-hoarder parent.

• Losses in positive family traditions and events. • Limits to what could be available to their own children, such as visits with

grandparents in the family home. • Most realized that parental hoarding took much of what they could have had away

during childhood and continued to consume them for years to come. Many chose to distance from parent in order to be able to secure their own lives.

• Divisions among siblings-divisions in how to approach anything related to the parents, hoarding and aftermath.

• Facing the mess after the parent dies-other parent at risk, damaged and loss property, a huge physical undertaking to clear the house.


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Concerns about hoarding parent


“Her house is sinking and she is now sleeping on a wicker loveseat as she's run out of room for a bed. I'm worried about the damage this is doing to her back. She also can't have friends over because of the hoard. She's now staying in her attic with no heat other than a space heater & no kitchen.” “The home currently has holes in the roof. I am concerned that the roof will cave in and she will be buried under the hoard. Also, she lives alone and only periodically answers her phone. I worry that she could fall and be injured or die in the home and no one would find her for weeks.” “My Mother is now 87 and is unable to get rid of her hoard even if she miraculously wanted to. I think it is horribly sad that her life is essentially over and she's never been able to live ‘normally.’”

How did you feel about your parent?

• THESE STATEMENTS 2,3,4 ARE ABOUT HOW THE SUBJECTS FEEL ABOUT THEIR HOARDING PARENTS

• THE STATEMENTS WERE DONE ON A LIKERT SCALE AND ONLY THE MOST EXTREME RATINGS ARE REPORTED HERE: OFTEN AND NEVER


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I. How I Feel About Parent (X), Primary Hoarder4

STATEMENT 0-12 13-19 20-29 30+

I enjoy being with X. Often 33.6 11.6 15.3 27.2

Never 17.2 28.6 33.7 43.6

It gets easier to understand X

Often 5.1 6.6 18.6 38.0

Never 55.3 60.9 36 27.8

X is an important part of my life.

Often 65.4 32.9 27.6 25.4

Never 10.4 21.3 27.2 25.4


II How I Feel About Parent (X)

STATEMENT O/N 0-12 13-19 20-29 30+

I don’t mind doing things for X.

Often 28.4 14.5 13.9 21.4

Never

19.1 28.1 30.2 31.3

I feel that I can help X get better

Often 20.3 13.0 11.6 7.5

Never

46.1 48.4 54.2 71.1

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III How I Feel About Parent (X), Primary Hoarder

STATEMENT O/N 0-12 13-19 20-29 30+

I don’t expect much from X anymore

Often 26.0 52.3 62.2 33.7

Never

33.7 10.2 8.3 72.8

I am tired of trying to organize my life around X

Often 30.5 54.9 46.8 43.6

Never

39 16 25.0 43.6

If X leaves me alone, I leave X alone

Often 25.0 45.3 48.2 48.0

Never

30.9 16.4 17.9 19.7


IV How I Feel About Parent (X), Primary Hoarder

STATEMENT O/N 0-12 13-19 20-29 30+

I just don’t care what happens to X anymore

Often 8.1 21.4 23.1 29.9

Never

66.5 36.6 39.8 36.8

I wish X had never been born Often 5.8 14.1 8.3 12.3

Never

72.9 61.2 67.1 72.1

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How it felt to be in the home


“Helpless. I wanted to clean, learn to cook, I wanted to watch TV and invite friends over. Little things I was never able to do as a child caused me to grow up so fast and turn to food as an escape from reality.” “Confined… Trapped… Disconnected. I often watched tv from the moment I got home until late at night.” “Anxious…. It was always dark. I also felt disgusted. It's hard not to be when there's 3 inches of dust underneath a desk, or a rotting dead rat nobody can find, but everyone can smell… I wasn't at the time, but now I feel angry. Why weren't we more important than her junk? It would have been nice to have people over. But that would have taken effort, and we weren't worth that.” “Scared. I never knew what mood my mother would be in that day.” “Numb. I spent much of my childhood trying not to feel anything at all.”

Assessment of Depression and Anxiety

• So many of these subjects suffered from depression and anxiety.

• Symptoms of likely varied across subjects development, so we asked them to think back about how much they experienced symptoms during different periods of their lives.

• We used rating scales to measure the severity symptoms.


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PHQ-9(Depression)5 & GAD-7 (anxiety)6

• PHQ-9 measures frequency of 9 symptoms of depression. • GAD-7 measures frequency of 7 symptoms of anxiety. • The higher the frequency, the more severe the disorder. • Standard – Frequency ratings are for the 2 weeks before the

evaluation. • Our study – Frequency ratings are during periods of the subjects

life: 0-12, 13-20, 21-29, and 30+ years. • Of course depending on the subject’s current age, not all periods

were rated. • Each symptom gets a score of: 0 = not at all, 1= several days, 2 =

over half of the days, and 3 = nearly all of the time. • Final severity score is all symptom scores added together • Maximum score for: depression = 27 and anxiety = 21.


PHQ-9 SCORE EQUAL TO OR MORE THAN:

5-9 Mild, 10-14 Moderate, 15-19 Moderately Severe,

20-27 Severe Depression


AGE AVERAGE SCORE

ACROSS SUBJECTS SEVERITY

0-12 9 (8.75) MILD (5-9)

13-20 12 (12.16) MODERATE (10-14)

20-29 10 (10.19) MODERATE(10-14)

30+ 10 (9.9) MODERATE(10-14)

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INTERPRETATION OF RESULTS

Mild depression 5-9

• Few, if any, symptoms in excess of those required to make diagnosis & symptoms result in only minor impairment in occupational functioning or social/relationship functioning.

Moderate depression 10-14

• Symptoms in excess of the minimal number required for the diagnosis that often keep the person from doing things they need to do.



PHQ – 9 Several days > than 1/2 Nearly ALL

Little interest or pleasure in doing things

0-12 33.5 9.3 5.8

13-20 41.5 22.1 10.9

20-29 43.7 15.1 9.1

30+ 41.1 17.3 7.9

Trouble concentrating on things, e.g., reading or watching TV

0-12 24.2 11.3 9.0

13-20 30.7 13.2 13.2

20-29 33.9 13.6 8.0

30+ 31.5 15.5 9.0

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PHQ - 9 Several days > than 1/2 Nearly ALL

Moving or speaking so slowly that other people could have noticed. Or the opposite, being so fidgety or restless that you moved around a lot more than usual

0-12 29.0 23.4 22.2

13-20 21.0 9.0 11.7

20-29 24.2 7.9 6.4

30+ 24.1 7.4 4.4

Poor appetite or overeating

0-12 23.7 19.1 20.2

13-20 24.0 21.7 28.7

20-29 29.0 23.4 22.2

30+ 31.5 22.2 19.2



Trouble falling or staying asleep, or sleeping too much

0-12 24.2 19.9 16.8

13-20 27.0 21.9 30.1

20-29 34.1 23.0 19.4

30+ 34.1 23.0 19.4

Feeling tired or having little energy

0-12 28.0 16.3 12.5

13-20 28.0 16.3 12.5

20-29 34.8 22.5 20.2

30+ 39.6 19.8 17.8

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Feeling down, depressed, hopeless

0-12 42.6 16.4 12.1

13-20 41.5 22.1 10.9

20-29 53.8 21.9 12.0

30+ 53.8 21.9 12.0

Feeling bad about yourself, or that you are a failure or you have let yourself or your family down.

0-12 32.3 19.1 24.5

13-20 29.1 27.1 31.8

20-29 38.1 23.8 18.7

30+ 39.6 19.8 17.8



Thoughts that you would be better off dead or of hurting yourself in some way

0-12 25.7 12.5 9.0

13-20 36.1 13.6 18.2

20-29 36.7 8.0 8.4

30+ 28.7 7.4 5.9

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PHQ- 9 DEPRESSION: MODERATE TO SEVERE RATINGS (2-3); OVER HALF OF THE DAYS - NEARLY ALL OF THE TIME

PERCENTAGE PER AGE GROUP

Statements 0-12 13-19 20-29 30+ Feeling bad about yourself, or that you are a failure or you have let yourself or your family down.

43.6 58.9 42.5 37.6

Thoughts that you would be better off dead or of hurting yourself in some way.

21.4 31.8 16.3 13.4

Feeling down, depressed, hopeless.

28.5 51.6 33.9 35.0


PHQ- 9 DEPRESSION: MILD TO SEVERE RATINGS (1-3); SEVERAL DAYS - NEARLY ALL OF THE TIME

PERCENTAGE PER AGE GROUP

Statements 0-12 13-19 20-29 30+

Feeling bad about yourself, or that you are a failure or you have let yourself or your family down.

75.9 88.0 80.6 77.23

Thoughts that you would be better off dead or of hurting yourself in some way.

47.0 67.8 53.0 42.1

Feeling down, depressed, hopeless. 71.1 91.5 87.7 80.8

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Feelings about ourselves


“I am totally introverted. I have a public façade that I use, but she is nothing like the real me. I worry that people will someday realize that we're not the same person.” “Planting flowers in my mother's garden so the outside of the house would look good -- while inside the house was filthy; I always felt the same way as a kid: I had something very wrong inside me and had to cover it up by acting and looking good on the outside.” “ I felt guilty for taking tags off of toys or taking them out of boxes.” “I didn't like me very much. I felt fat and ugly and stupid.” “I cut myself just to see if I would bleed. I cut myself to feel pain that wasn't destroying me inside. I cut myself to watch it heal and know I was alive. I cut myself daring myself to cut just a bit deeper and end that terrible lie.”

Anxiety and Fear

• Physical conditions of the home

• Not having a consistent idea of what is right and what is wrong, parental inconsistency

• Consequences could and often were severe

• Socially related fears-who will find out, what will they do?

• Fear of loss-house, parent, siblings, friends, freedom, and control over space and stuff.


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Top 3 Fears/Concerns While Living in Hoarded House

FEAR/CONCERN % FEAR/CONCERN %

Social fears 31% Loss of house/things 11%

Danger/Safety 25% Police/Authorities 10%

Grave Endangerment 16% Parents’ Health 10%

Fire 15% Becoming a Hoarder 5%

Separation from family 14% Animal Endangerment 7%

Pests (roaches, rats) 13% None 2%

Always living in a hoard 12%


GAD-7 SCORE6

5-9 Mild Anxiety, 10-14 Moderate Anxiety, 15-21 Severe Anxiety

AGE AVERAGE SCORE

ACROSS SUBJECTS SEVERITY

0-12 11 (10.70) Moderate

13-20 13 (12.99) Moderate

21-29 11 (10.89) Moderate

30+ 10 (9.82) Moderate


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GAD-7 Several days > than 1/2 Nearly ALL

Not being able to stop or control worrying

0-12 29.0 18.4 32.7

13-20 24.4 26.3 39.9

20-29 27.7 28.8 27.7

30+ 31.60 22.64 24.06

Worrying too much about different things

0-12 27.6 20.5 36.2

13-20 28.4 31.4 28.4

20-29 28.4 31.4 28.4

30+ 28.91 25.12 27.49



Trouble relaxing

0-12 24.3 20.2 31.1

13-20 21.1 25.3 39.3

20-29 22.7 25.0 22.7

30+ 31.3 25.1 20.4

Being so restless that it is hard to sit still

0-12 23.0 14.3 18.1

13-20 21.1 25.3 39.3

20-29 9.2 17.6 9.2

30+ 31.8 11.4 9.5

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Feeling nervous, anxious, or on edge

0-12 28.3 20.8 32.3

13-20 22.2 32.0 39.1

20-29 23.8 30.6 23.8

30+ 40.6 25.5 21.23

Becoming easily annoyed or irritable.

0-12 27.6 25.3 16.6

13-20 23.3 30.8 34.6

20-29 9.2 17.6 9.2

30+ 39.1 25.2 21.0



Being afraid as if something awful might happen

0-12 29.5 20.9 32.8

13-20 19.3 24.9 40.0

20-29 25.5 25.9 25.5

30+ 36.0 20.4 20.4

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N =256 SELF-STATEMENTS

UNTRUE TO VERY UNTRUE

TRUE TO VERY TRUE

I blame myself. 12.2% 49.4%

I suffer from guilt. 11.5% 50.6%

I suffer from shame. 12.4% 42.6%

I feel unworthy. 20.0% 34.9%

I have difficulty being aware of my feelings.

41.7% 14.5%

I have difficulty identifying my feelings.

37.9% 18.1%

I get agitated. 13.4% 34.5%


N = 256 SELF-STATEMENTS


TRUE TO VERY TRUE

I am affectionate. 8.3% 45.5%

I am afraid of conflict and avoid it. 10.0% 43.2%

I am a caretaker - I give too much. 15.8% 35.8%

I take too much responsibility for other people’s care or well-being.

15.4% 33.3%

I am overly aware of other people’s needs.

14.1% 28.6%

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N=256 SELF-STATEMENTS


TRUE TO VERY TRUE

I don’t trust that other people will do things properly.

11.2% 40.5%

I am overly attentive to details. 18.8% 25.6%

I over analyze situations. 3.8% 62.6%

I have trouble getting close to other people.

20.4% 29.2%

I have trouble trusting other people.

12.0% 35.5%

I depend on other people to manage things.

45.0% 8.2%

I would prefer to make my own decisions.

3.5% 55.8%


N= 256 SELF-STATEMENTS


TRUE TO VERY TRUE

Having things is important to me. 32.0% 14.3% I have a good sense of the value or worth of my things.

4.2% 48.8%

I undervalue my things. 34.0% 6.1%

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Strengths


Although the effects of hoarding were profound in mood, anxiety , negative emotions and general appraisals of worth, most subjects are doing a lot right. In comparison to their parents.

Less desire toward consumerism, frugality, thriftiness

Greater effort in building healthy relationships with friends and partners.

Greater awareness of parenting behaviors and effort into positive parenting

A highly developed ability to read people via non-verbal cues and to adapt

Achievers, problem-solvers and focused on stability and balance

Compassionate survivors

What would you tell a child who lives in a hoarded home?


N = 160, PERCENTAGES

It’s not your fault 35%

Put your needs first (self-care) 35%

Life gets better (hope) 29%

Leave as soon as you are able 26%

Confide in someone 23%

You are not alone 6%

Uncategorized (still struggling) 5%

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shame

d e p r e s s I o n

frustration

NEGLECT

I s o l a t I o n

abuse

b L a M e

numb

anxious


…for those still in the hoarded house

• Emergent Awareness

• Safe Houses/Access to points of hygiene • Mentoring programs

• Community/social opportunities

• Training teachers/doctors/mental health providers


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…for those who’ve left their parents’ home

• Self-focused recovery groups • Mentoring programs

• Family-based therapy

• Writing workshops to express feelings safely

• Life skills workshops


…to enact lasting change for the whole family

• Resources for family counseling • Changes to reporting laws • Community awareness and support

• Treatment must be family-centered

• Ongoing support


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References

1. Frost RO, Steketee G, Tolin DF, Renaud S. Development and validation of the Clutter Image Rating. Journal of Psychopathology and Behavioral Assessment. 2008;32:401–41

2. Tolin, DF, Fitch, KE, Frost, RO, Steketee, G; Family informants’ perception of insight in compulsive hoarding. Cog Therapy and Research. 2010; 34: 69-81.

3. Tolin DF, Frost RO, Steketee G, Fitch KE. Family burden of compulsive hoarding: results of an internet survey. Behav Res Ther. 2008;46:334-344.

4. Kreisman DE, Simmens SJ, Joy VD. Rejecting the patient: Preliminary validation of a self-report scale. Schizophr Bull 1979;5:220-2.

5. Kroenke K, Spitzer RL, Williams JB; The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001 Sep;16(9):606-13.

6. Spitzer RL, Kroenke K, Williams JB, et al; A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006 May 22;166(10):1092-7.


THANK YOU

• END OF PRESENTATION


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