Thinking About Hoarding: How Adults Who Hoard Think
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1 Thinking About Hoarding: How Adults Who Hoard Think Carol Mathews, MD, Department of Psychiatry, UCSF Scott Mackin, PhD, Department of Psychiatry, UCSF Monika Eckfield, RN, PhD, School of Nursing, UCSF Mental Health Association of San Francisco 14 th Annual International Conference on Hoarding & Cluttering April 27, 2012 Goals for this workshop Present new research that explores: The genetic link of hoarding in families How the brain processes errors or mistakes How the brain processes visual information and performs executive functions The possibility of two different types of hoarding behaviors Discuss how this research can be put into use. Answer your questions. 1
2 Sorting out the Genetics of Compulsive Hoarding Carol A Mathews MD Department of Psychiatry University of California, San Francisco cmathews@lppi.ucsf.edu Compulsive Hoarding and its relationship to OCD Currently a subtype of OCD Proposed for DSM-V as a separate diagnosis Clinically different than OCD, and also more than just hoarding and cluttering behaviors 2
3 Relationship to OCD Many (but not all) compulsive hoarders have additional OCD symptoms Compulsive hoarding runs in OCD families (and vice versa) Hoarding symptoms are not entirely ego-alien or ego-dystonic, in contrast to other types of OCD symptoms Have some similarities to impulse control disorders (e.g., compulsive buying) Overlap of HD and OCD OCD and HD are related to each other, but are not the same disorder 30-50% of HD individuals have comorbid OCD 40% of OCD individuals have hoarding symptoms 10-15% report hoarding as their most impairing symptom 3
4 Hoarding subtype of OCD Multiple subtypes of OCD that are independently heritable Heritability for hoarding subtype =.37 Hoarding subtype Hoarding obsessions and compulsions Compulsive list making Fear of saying the wrong thing Re-reading and re-writing Need to remember seemingly useless info Genetics of HD Heritability of hoarding symptoms in twins is 50% In our large OCD families, heritability of hoarding symptoms is as high as 75% Genetic linkage studies of HD have been conducted, but only in OCD families Identified a region on chromosome 14 that may harbor a HD susceptibility gene This genetic region does not overlap with the regions identified for OCD, even using the same families 4
5 Family risks of OCD If person has: HD and OCD, then the risk of OCD is 40% HD but not OCD, then the risk of OCD is 26% OCD but not HD, then the risk of OCD is 18% Neither HD or OCD, then the risk of OCD is 1% Risk of OCD is increased for family members in both OCD and in HD families Family risks of HD If a person has: HD and OCD, then the risk of HD is 52% HD but not OCD, then the risk of HD is 52% OCD but not HD, then the risk of HD is 4% Neither OCD or HD, then the risk of HD is 4% Risk of HD is only increased for family members in HD families, but not in OCD families without HD 5
6 Genetics of HD Clearly, the genetics of HD are complex, and there are also likely to be non-genetic effects that play a role Age also plays a role, in that symptoms get worse with age, making it hard to study families 6
7 Endophenotype/Cognitive Profile of HD There may be other associated symptoms that present earlier in life that can be used either to: Study the genetics of HD more effectively Identify people at risk for HD before their symptoms become problematic Associated symptoms of HD Indecisiveness Disorganization Perfectionism Avoidance Procrastination Difficulty with prioritization/valuation 34% have ADHD 5% more meet symptom criteria but had a later onset of symptoms 7
8 Neurocognitive Model of HD: Frontally Mediated Dysexecutive Syndrome? Fear of making an error Decision Making Trouble making decisions about what to discard, what is important Initiation- actually acting on a decision Categorization How to categorize what is important and what isn t Attention Can they sustain attention to a task long enough to complete? Is it harder for visual tasks? With ADHD tasks are frequently procrastinated because of distractability Speed of information processing Are decisions processed slower? Making it difficult to arrive to a conclusion and course of action Fear of making an error leads to not throwing anything away It could be useful, I might need the information contained in it, I haven t read the whole thing and might be missing out 8
9 Error related negativity Fear of making errors also occurs in OCD Thought to be 2 o to an over-active performance monitoring and response conflict system EEG measures associated with performance monitoring and error detection are abnormal in OCD Error related negativity (ERN), a negative deflection in the response-locked event-related potential (ERP) that is thought to reflect the mismatch of actual and intended responses on error trials, is hyperactive in OCD ERN for studies separated by task type 0= response conflict tasks 1=probabilistic learning tasks 2=other (memory-based tasks) 9
10 ERN Amplitude 5/10/2012 OCD with and without hoarding symptoms OCS/OCD with hoarding smptoms OCS/OCD without hoarding symptoms RC zern Task Type PL zern Results from a preliminary study of HD, OCD and their family members Aim 1: to identify specific neurocognitive profiles that distinguish HD from OCD and controls (those without HD or OCD) Aim 2: to identify potential endophenotypes for HD and for OCD 10
11 Participants 25 with HD, 25 with NH-OCD, 25 HMC, and FM of HD and OCD HD and Fear of Making an Error Indirect evidence from neuropsych testing Visual Categorization Speed of information processing Other evidence points to impairments in visual processing Visual learning Visual memory Visual categorization and processing 11
12 HD and Conflict Monitoring Commonly observed feature of OCD is intolerance of uncertainty A more specific aspect of this, fear of making the wrong choice (i.e, an error) may be more fundamental to HD Electrophysiological measures associated with performance monitoring and detecting errors are abnormal in OCD Error related negativity (ERN) EEG-based measure Frontally-based negative deflection in the response-locked event related potential (ERP) Thought to reflect the mismatch between actual and intended responses when making an error 12
13 ERN in HD and OCD and HD-FM Fcz HD (N=17) OCD (N=7) HMC (N=10) Unaffected HD family members (N=12) ERN Figure 1: Grand average response-locked ERN waveform plots for error responses in incongruent trials for the expect-congruent condition on the flanker task described in this proposal. X axis=time in milliseconds. Y axis= amplitude in microvolts. ERN is evident 80 ms following error response. Note that unaffected HD family members have ERN amplitudes intermediate between HD and HMC. The same pattern is also seen at the Cz electrode. ERN Results, Summarized ERN is hyperactive in OCD, as predicted and consistent with the literature ERN is hypoactive in HD, somewhat unexpectedly Represents decreased error processing/recognition HD family members have an intermediate pattern in absence of hoarding symptoms 13
14 fmri task 10 HD and 10 HMC Go/No Go task and Stroop task in fmri Stroop comparison of regional activity during congruent and incongruent trials reflects response conflict Go/NoGo regional brain activity during correct no go trials reflects response conflict and activity during error trials reflects error processing Stroop congruent RED 14
15 Stroop incongruent RED Stroop Task: Visual Conflict Go-NoGo Task: NoGo Errors ACC DLPFC R OFC Controls > Hoarders Controls > Hoarders Stroop Task: Visual Conflict ACC Go-NoGo Task: Visual Conflict ACC DLPFC Visual Cortex Hoarders > Controls Hoarders > Controls 15
16 Stroop Task: Low Visual Conflict Stroop Task: High Visual Conflict DLPFC (BA 46) Controls > Hoarders Controls > Hoarders Model HD is associated with a deficient error detection and monitoring system Compromised function of dorsal ACC and DLPFC in response to commission errors ERN is hypoactive ACC and DLPFC show reduced activation in response to errors Contrasts with hyperactive error monitoring system in OCD 16
17 Model HD is associated with excessive response-conflict related ACC activity Dorsal ACC is hyperactive during high conflict trials Overlaps with OCD literature Model HD is associated with deficient prefrontally mediated executive control system Deficient or inefficient activation of DLPFC during cognitive control tasks deficiencies in the ability of HD to represent task goals and exert top down control processes to efficiently guide response selection May differentiate from OCD 17
18 Model HD is associated with inefficient activation of visual cortical regions involved in processing task stimuli during high visual conflict conditions Excessive visual cortex activation during high visual conflict trials of the Stroop Task. Visual processing deficits revealed by neuropsychological testing Clinical implications Neurocognitive impairments, and dysfunctional brain circuitry underlying them may contribute to HD individuals struggle to make decisions about what to discard, leading to a tendency to avoid discarding, as well as to difficulties recognizing when they have made poor decisions that undermine their attainment of goals (e.g., restoring order/utility to their homes). 18
19 Genetic implications At least some of these abnormalities (most clearly seen in the ERN but also seen in the neuropsych findings) are also present in unaffected 1 st degree relatives of individuals with HD, suggesting that executive dysfunction may be a more elemental feature of HD than the hoarding behaviors themselves, and also that such measures would be appropriate endophenotypes for genetic studies. 19
20 Cognitive Functioning in Hoarding Disorder Scott Mackin, PhD University of California, San Francisco Department of Psychiatry Financial Disclosures Dr. Mackin does not have any financial relationships with pharmaceutical companies, biomedical device manufacturers, or other corporations whose products or services are related to the subject matter of the presentation topic. 1
21 Hoarding Disorder Excessive acquisition/ unwillingness to discard seemingly useless items Significant functional impairment SCH is common: 2-5% prevalence Typical onset: ages family & Genetic studies sig association Cognitive functioning in HD is understudied Domains of Cognitive Function Learning Memory Language Visuospatial Functioning Executive Functioning Categorization Problem Solving Attention Speed of Information Processing Cognitive Set Shifting 2
22 Mild Cognitive Impairment Cognitive complaints Informant report of cognitive decline Objective evidence of cognitive impairment (usually 1.5 sd below population norms on neuropsychological tests) Cognitive impairment does not significantly interfere with daily function No Dementia Neurocognitive Model of HD: Visual Learning/Memory: Learning what is important; remembering where things are Problem Solving Identify/make decisions about what to discard Initiation- acting on a decision to discard Categorization How to categorize what is important and what isn t Attention Sustaining attention to a task long enough to complete Speed of information processing Slow decision making ; difficult to arrive to a conclusion and course of action 3
23 Previous Studies of Cognitive Functioning in HD Decision Making 2 studies: one FTD case study Categorization 1 study impaired WCST performance Attention No differences in working memory reported; suggestion of visual attention inefficiencies Speed of information processing Slower IPS and more impulsive (1)/inattentive on CPT tests Methods-Neuropsychological Assessment Use of Age Corrected Cognitive Domain Index Scores Memory Executive functioning Categorization specifically assessed Visuospatial processing Language Attention/Working Memory Abstract Reasoning Speed of Information Processing 4
24 Calculating Cognitive Domain Index Scores Cognitive Domain Index Score = SsTest1+ SsTest2 + SsTest3 3 *Scaled Scores Corrected for Age How We Defined Cognitive Impairment Cognitive domain score <10 th percentile 5
25 Neuropsychological Battery MEMORY: Logical Memory-WMS-III, Hopkins Verbal Learning Test, Brief Visuospatial Memory Test; Rey Complex Figure Test EXECUTIVE FUNCTIONING: Delis Kaplan Card Sort; Strop Color Word Test, Trail Making Test Part B, VISUOSPATIAL LEARNING: Rey Complex Figure Test; Brief Visuospatial Memory Test ATTENTION/WORKING MEMORY: WAIS IV-Digit Span; WAIS IV Letter Number Sequencing SPEED OF INFORMATION PROCESSING Conners Continuous Performance Test; Trail Making Test Part A Participant Characteristics 6
26 Cognitive Functioning: Visual Learning & Memory VISUAL LEARNING VISUAL MEMORY Test BVMT-R Learning T Score RCFT Copy Correct/Time BVMT-R Delayed Recall T Score RCFT Immediate Recall T Score Healthy Controls Mean (SD) Hoarding Disorder (n=15) Mean (SD) 49.0 (11.4) 36.8 (9.6)** 0.22 (0.04) 0.18 (0.03)* 49.2 (11.7) 38.0 (11.0)* 56.3 (13.1) 48.6 (16.6)* Cognitive Functioning: Information Processing Speed Test Healthy Controls Mean (SD) HD (n=15) Mean (SD) CPT Hit Rate Reaction Time SS CPT Perseverations SS 8.3 (2.7) 7.8 (2.9) 11.3 (0.5) 7.6 (4.2)* 7
27 Test DKEFS Correct/Attempts DKEFS Card Sort Incorrect DKEFS Card Sort Attempts DKEFS Card Sort Time T1-T3 (sec) Cognitive Functioning: Categorization Ability Healthy Controls Mean (SD Hoarders Mean (SD) 0.82 (0.16) 0.66 (0.22)** 1.1 (1.2) 2.9 (2.5)** 5.6 (2.0) 7.9 (2.9)* 73.2 (51.0) 82.4 (102.0) Special Thanks to Carol Mathews Craig Nelson Shiva Fekri Steve Bistricky Macey Baker Lauren Couture Monika Eckfield Sarah Carlisle Nicole Duffy Alex Elite Katie Flach Erin Gillung Eamonn McKay Kevin Delucchi 8
28 Two Types of Hoarding Disorder in Older Adults Monika Eckfield, RN, PhD UCSF School of Nursing Goals of the Presentation Describe my research on older adults with hoarding disorder. Outline the two types of hoarding behaviors found in this study. Discuss the implications of the two types on treatments or interventions 1
29 From Community Nursing to Research How can nurses promote the health and safety of older adults who live in cluttered, crowded environments? Photo courtesy of NPR s Health Blog, Shots, May 2, 2011 Limited Research on Older Adults 12 studies included older adults: Symptoms worsen with age Disproportionately affects older adults Likely to be living alone Multiple medical issues Depression and anxiety Some overlap with squalor/ self-neglect Embarrassment or fear losing control to others 2
30 Research Study The Influence of Aging on the Process of Accumulation: A qualitative study of older adults with hoarding and cluttering behaviors This research was made possible by: The John A. Hartford Foundation Freedom From Fear San Francisco Department of Aging and Adult Services Mental Health Association of San Francisco Institute for Challenging Disorganization Hartford Center of Geriatric Nursing Excellence at UCSF Institute on Aging and additional community partners 3
31 Aims of the Study: Describe the factors and processes that influence hoarding behaviors and contribute to the worsening or improvement of the behaviors over time. Describe how hoarding behaviors currently affect the lives of older adults, including: Ability to engage in relationships and access social supports Effects on their physical and mental health Ability to conduct normal daily activities Methodology Grounded Theory Iterative process of open, axial, and selective coding Constant comparisons across cases Data Collection In-person interviews in participants homes Researcher s field notes Photographs taken when permitted 4
32 Blockage 5/10/2012 Results 22 participants 16 women, 6 men 5 currently married, 9 divorced, 3 widowed, 5 never married Age (average 74) Race/Ethnicity: 3 African American, 15 Caucasian 1 Hispanic, 1 from India, 1 Chinese American, 1 Japanese American Education range from completion of 10 th grade to Master s degrees Socioeconomics range: low-income housing and on Medi-Cal to home owners who are currently employed or retired with savings Process of Accumulation Acquiring Maintaining Discarding Active Passive Reasons to keep items Strategies to manage at home Motivation to discard Barriers to discarding Effects on daily life 5
33 Two Types of Hoarders Impulsive Acquirers 9 participants (5 of the 6 men) Acquire things actively, impulsively, for the thrill of gaming the system Keep items because they reflect personal interests, past experiences Adapt to the crowded environment rather than try to change environment Cite logistical barriers to discarding things Report symptoms of ADHD and impulsivity Primary negative effect on daily life is interference with ADLs Worried Keepers 13 participants (1 man) Acquire things actively as part of social outings, substantial passive acquisition Keep items as a safeguard against worry, potential future need Multiple strategies to modify environment Cite difficulty with decision making and declining health as barriers to discarding Report more anxiety and depression Multiple negative effects on daily life: interference with ADLs, increased isolation, negative effects on mental health Quotes from Impulsive Acquirers Participant #8, male, age 66: Sheesh, did I get the bargains! I used to go in there and get eleven bottles of [salad] dressing for free. Back when they had those dollar coupons, the damn thing was selling for $2, you bring a dollar coupon, it was double at the Cala. We all were cleaning up. I was piling up from that. That's when it all started, with the coupon days. Participant #4, male, age 66: My daughter calls it garbage. I go, Don t call it garbage, it s my stuff! I mean archeologists are going to come through [and say], Look at how much stuff this guy had! 6
34 Quotes from Worried Keepers Participant #21, female, age 81: I think it s just the fear that if I get rid of everything I am definitely going to need something and I am definitely going to have no way to get it, to replace it. Participant #11, female, age 78: I was depressed because of the accumulation. I was depressed because I didn t want to tackle it. I was depressed because I was tired of being depressed looking at it and doing nothing about it. Just depressed. Just annoyed. Annoyed with me. Participant #17, female, age 72: There's no room for me to have my friends [over] and I think I have lost a lot of friends because I have not been able to return their invitations for what they do. Clinical Implications: Differences Different Intervention Strategies for Two Types Impulsive Acquirers Pleasurable alternatives to acquisition Strategies to curb impulsivity Identify and adapt to attention deficits Worried Keepers Decrease anxiety and depression Strengthen decision making and problem solving skills Provide coaching and reassurance 7
35 Clinical Implications: Similarities Adaptations when working with older adults Accommodate for health/energy limitations. Facilitate removal of items identified by resident to be discarded. Connect older adults with meaningful social opportunities. Capitalize on age-related motivating factors. Next Steps in Research Can we verify these two types of hoarding through other research methods? Do current assessment tools for hoarding sufficiently assess characteristics that distinguish these two types? Do gender or age influence type of hoarding? Are current treatment approaches better for one type of hoarding over another? 8
36 Intended Outcomes of Research Clearer clinical descriptions of hoarding types Recommendations for refining current assessment tools Development of a screening tool to distinguish individuals by hoarding type Ability to examine treatment outcomes based on type Development of additional treatment approaches tailored to hoarding type. THANK YOU! Monika.Eckfield@ucsf.edu 9
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