1. Brisbane, March 11, 2015 TOO MUCH MESS Squalor and hoarding by John Snowdon jsnowdon@mail.usyd.edu.au

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3. Too much mess What do the terms ‘hoarding’ and ‘squalor’ mean? Do we like them? Why do some people hoard excessively? Why do some people live in squalor? Should we intervene? If so, why? Walking on the other side … Media representations of squalor and hoarding. Helpful and ethical, or not?

4. Who should take action? Man aged 60 years, sent on schedule which stated: “Grossly disshevelled, unkempt. Living in profound squalor. Deterioration in hoarding behaviour in recent months. Poor hygiene. He stated that he only has one meal a day and has not changed his clothes for several years. He … slept outside to ‘protect his privacy’. Denied self-harm or harm to others (yelling at night as well)” Community team notes: “Referred by neighbour who was concerned about X’s mental state. Has apparently been sleeping under an umbrella outside his house (on front porch). Collects rubbish and fills back yard with it. Has no running water or power. Stays out until 3 a.m., sleeps until midday. According to neighbour, X shouts to himself in the early mornings. Assessed outside front door as client refused to let us in. Poor insight. Says he “chooses” to live like that. Does not see a problem”. In hospital 13 days. CT brain scan normal. Blood tests OK. 4

5. Psychological report “ Significant impairment on tasks of immediate memory for verbally presented information. On tests of executive functioning X fell within the impaired classification overall… Difficulty focussing his attention, in recalling novel information and with tasks requiring more abstract, higher level processing. He demonstrated poor judgement and impairment in self-direction and self-regulation. This pattern of results may be indicative of a frontal lobe condition. ” 5

6. Who should take action? 9 years later, referral to community mental health team from the client’s nephew. The family hadn’t seen X for 30 years, but his uncle wanted to see him before he (uncle) dies. When they arrived at the property they found it to be “in squalor” and X was unkempt. “The neighbours state they have made numerous complaints to council about the rats but nothing has been done. X is sleeping on the front verandah amongst the squalor and accumulated items”. Hasn’t been in the house for 5 months. Unkempt. Aware he needs to clean up. Orientated. Has money in the bank. Showered. Given new clothes to take home … 6

7. Meanings of words Collecting Accumulating (eventually amassment) Hoarding Pathological animal collecting (“hoarding”) Environmental neglect (? self-neglect) Severe domestic squalor 7

8. Our common understanding is that hoarding = storing for future use, or to look at, perhaps Squirrel away? Bower-bird mentality? In recent years, excessive item or material amassment has been widely referred to as hoarding, even when it’s not done purposely and the stuff lacks use or value. 8

9. Why do some people hoard? Complex interplay of factors: Perceived value of items: sentimental, practical ( now or later ), intrinsic Personality; need for security, comfort Organisational: can’t decide whether/how to retain Genetic Beliefs, culture, attitudes Neurobiological disturbance (e.g. brain disorder) Erroneous beliefs Attachment issues etc. We need psychologists! 9

10. Hoarding has been defined in the psychological literature as the acquisition of, and failure to discard, possessions of limited use or value. The person actively acquires stuff, purposely keeps it, and (if it’s abnormal/pathological) living spaces become too cluttered for activities for which they were designed. The person’s distressed and there’s significantly impaired ability to function. 10

11. DSM-5 Hoarding Disorder A. Persistent difficulty discarding items, regardless of actual value B. …due to perceived need to save the items, and distress associated with discarding them, C. …resulting in accumulation of possessions that clutter living areas, thus substantially interfering with function and activities. D. This causes clinically significant distress or impairment in social, occupational or other important areas of functioning. E. Not attributable to a medical condition (brain injury, stroke, etc) F. Not better explained by the symptoms of another mental disorder: cognitive deficits (dementia), obsessions (OCD), low energy (major depression), delusions (schizophrenia), restricted interests (autism). Specify if (a) with excessive acquisition, (b) with good/poor/no insight 11

12. Collecting (as opposed to hoarding) is selective object accumulation. Pleasurable: Psychological benefit 12

13. Normative collecting versus Hoarding Disorder Normative collecting Selective. Cohesive theme. Narrower range of categories Planned, organised collecting Not usually excessive. Orderly display of collection Distress rare ( e.g. due to cost ) Minimal social impairment; collecting adds to social life No significant work impairment Nordsletten et al (2012). Comp.Psychiatry 54, 229-237 Hoarding Disorder Non-selective. Lots of different categories Lack of planning or focus Commonly excessive. Disorganised clutter Distress is very common Severe social impairment; social withdrawal, single Occupational impairment common Belk R (2014) in Frost & Steketee, Oxford Handbook of Hoarding and Acquiring. 13

14. A useful question regarding clutter? Tolin et al (2007), in a handbook for those who compulsively acquire, save and/or hoard, asked “To what extent does the clutter in your home prevent you from using parts of your home for their intended purpose? For example, cooking, using furniture, washing dishes…....” Tolin DF, Frost RO, Steketee G (2007). Buried in Treasures. Help for Compulsive Acquiring, Saving and Hoarding. Oxford: Oxford University Press.

15. Collecting, hoarding, accumulating, disorganisation, mess, squalor: the OVERLAP Some people collect, hoard &/or accumulate clean stuff in an organised fashion. Others may be minimalists. You might hoard too much, so that even if it’s fairly well organised, it’s too difficult to keep clean. Disorganised hoarding may result in accumulating messily and living in SQUALOR. You might accumulate rubbishy stuff (‘cos you’re laid-back and you haven’t got round to discarding it yet). Or do people accumulate rubbish/waste/garbage/filth because they’re too cognitively disabled to throw it out? It’s not purposeful hoarding. Can lead to SQUALOR. 15

16. Accumulation or hoarding? 16

17. Accumulating papers ….

18. Accumulating emptied containers …

19. A. ACCESSIBILITY (clutter): ScoreDescription % of floor-space inaccessible for use or walking across 0 Easy to enter and move about dwelling 0-29% 1 SOMEWHAT IMPAIRED access but can get into all rooms 30 to 59% 2 MODERATELY IMPAIRED access. Difficult or impossible to get into one or two rooms or areas 60 to 89% 3 SEVERELY IMPAIRED access – e.g. obstructed front door. Unable to reach most or all areas in the dwelling 90 to 100% 19

20. DSM-5 Hoarding Disorder A. Persistent difficulty discarding items, regardless of actual value B. …due to perceived need to save the items, and distress associated with discarding them, C. …resulting in accumulation of possessions that clutter living areas, thus substantially interfering with function and activities. D. This causes clinically significant distress or impairment in social, occupational or other important areas of functioning. E. Not attributable to a medical condition (brain injury, stroke, etc) F. Not better explained by the symptoms of another mental disorder: cognitive deficits (dementia), low energy (major depression), delusions (schizophrenia), restricted interests (autism), obsessions (OCD). Specify if (a) with excessive acquisition, (b) with good/poor/no insight 20

22. Hoarding and squalor Maier (2004) drew together some of the literature on hoarding, and posited that, in many cases, so-called “compulsive hoarding” is really an impulse-control deficit, not a compulsion. Acquisition and saving may result in pleasure rather than being aimed at avoidance of feared consequences. And difficulty discarding may be related to avoidance of decision-making rather than a compulsion to retain. 22

23. Conclusions from Maier’s review are that the following can be called hoarding: (1) some with OCD and others who hoard have an urge to acquire, collect too much, and have difficulty discarding. (2) some with newly acquired brain disorders have an urge to collect and may resist discarding. (3) some (e.g. with developing brain changes) have difficulty with impulse control, and acquire more than they discard. 23

24. Maier pointed out that in various neuropsychiatric disorders (dementia, autism and let’s include schizophrenia) acquisition isn’t compulsive and isn’t due to poor impulse control. It’s “just motor activity without clear intention or aim, hence stereotypic, ritualistic.” People collecting in this way may be indifferent to removal of the items. He liked the term ‘collectionism ’ for this behaviour. 24

25. ‘Organic’ accumulation Hoarding disorder ONSETSudden or insidiousInsidious (from adolescence) ABILITY TO DISCARD Variable. Some don’t care Cannot discard ACQUIRINGOften indiscriminatePerceived intrinsic, practical or emotional value SQUALORFrequentUncommon PERSONALITY CHANGE CommonNot COGNITIVE & EMOTIONAL PROCESSES DisorganisedIndecision, abnormal categorisation, behavioural avoidance, attachment to possessions, etc. INSIGHTPoorRanges from good to poor PREVALENCE< 1%2 – 5 % FAMILIALSome reported casesYes

26. Do you hoard a lot? During your lifetime, have you ever accumulated so many things that your home was very cluttered (to the extent that you could not use some rooms for their intended purpose) and you found it very difficult to discard or give away these items? Screening question in a 2008-10 London Community Health Study 26

27. Why do some people with Hoarding Disorder live in squalor? 1. Unable to reach and clean all areas of the home. 2. Strong attachment to, and difficulty discarding, even dirty items. 3. Poor insight due to ‘blindness’ to filth. 4. Impaired neuropsychological function in HD: inability to organise and clean. 27

28. A mass of mess

29. Unclean

30. 30 ENVIRONMENTAL CLEANLINESS AND CLUTTER SCALE (all items 0,1,2,3) A. ACCESSIBILITY (CLUTTER): Not / somewhat / moderately / severely impaired 0-29%, 30-59%, 60-89%, 90-100% floor-space inaccessible B. ACCUMULATION OF ITEMS of little obvious value (what items?) C. ACCUMULATION OF REFUSE OR GARBAGE: None / little / moderate / lots D. CLEANLINESS OF FLOORS & carpets (excluding toilet / bathroom) E. CLEANLINESS OF WALLS, visible furniture SURFACES & window-sills F. BATHROOM & TOILET: Not / mildly / moderately / very dirty G. KITCHEN & FOOD: Clean / hygienic ……to very dirty / unhygienic H. ODOUR: Nil / pleasant ………………………..to unbearably malodorous I VERMIN: None / Few / Moderate / Infestation [ Define ] J. SLEEPING AREA: Reasonably clean …….to very dirty SCORE (max 30) …………

32. Where the Collyer brothers lived

33. Where the Collyer brothers lived in Manhattan

34. The Collyers’ cluttered staircase