Date of delivery: Journal and vol/article ref: IPG Number of pages (not including this page): 8

Transcription

1 Date of delivery: Journal and vol/article ref: IPG Number of pages (not including this page): 8

2 Author queries: Q1: Please check that all names have been spelled correctly and appear in the correct order. Please also check that all initials are present. Please check that the author surnames (family name) have been correctly identified by a pink background. If this is incorrect, please identify the full surname of the relevant authors. Occasionally, the distinction between surnames and forenames can be ambiguous, and this is to ensure that the authors full surnames and forenames are tagged correctly, for accurate indexing online. Please also check all author affiliations. Q2. Please check and confirm the changes made in author affiliations. Q3. Please confirm the change made in edit as A dichotomy exists among healthcare professionals that leads to either non-interventional or paternalistic approaches toward the person living in squalor. Q4. Since Table 4 has not been cited in text, please confirm the inserted citation for Table 4. Q5. Please confirm the change made in edit as Orbitofrontal involvement appears less likely as impulsivity, sexual inappropriateness, and overfamiliarity were not as common.

3

4

5

6 International Psychogeriatrics (2014), 00:0, 1 8 C International Psychogeriatric Association 2014 doi: /s Q1 Q Neuropsychological characteristics of people living in squalor... ABSTRACT Sook Meng Lee, 1,2 Matthew Lewis, 1 Deborah Leighton, 3 Ben Harris, 4 Brian Long 4,5 and Stephen Macfarlane 1 1 Aged Psychiatry Service, Caulfield Hospital, Alfred Health, Victoria, Australia 2 Department of Geriatric Medicine, Western Health, Sunshine, Victoria, Australia 3 Department of Neuropsychology, The Royal Melbourne Hospital, Melbourne Health, Melbourne, Victoria, Australia 4 Department of Neuropsychology, Kingston Centre, Monash Health, Cheltenham, Victoria, Australia 5 Department of Neuropsychology, Monash Medical Centre, Monash Health, Clayton, Victoria, Australia Background: Squalor is an epiphenomenon associated with a range of medical and psychiatric conditions. People living in squalor are not well described in the literature, and prior work has indicated that up to 50% do not have a psychiatric diagnosis. Squalor appears to be linked with neuropsychological deficits suggestive of the presence of impaired executive function. We present a case series of people living in squalor that examines their neuropsychological assessment and diagnosis. Methods: Clinicians from local health networks were invited to submit neuropsychological reports of patients living in squalor. These selected reports were screened to ensure the presence of squalor and a comprehensive examination of a set of core neuropsychological domains. Assessments were included if basic attention, visuospatial reasoning, information processing speed, memory function, and executive function were assessed. Results: Sixty-nine neuropsychological reports were included. Sixty-eight per cent of the group underwent neuropsychological assessments during an inpatient admission. For participants where it was available (52/69), the mean Mini-Mental State Examination score was (SD = 3.96). Neuropsychological assessment showed a range of cognitive impairment with nearly all the participants (92.75%) found to have frontal executive dysfunction. One person had an unimpaired neuropsychological assessment. Results indicated that dorsolateral prefrontal rather than orbitofrontal functions were more likely to be impaired. Vascular etiology was the most common cause implicated by neuropsychologists. Conclusions: Frontal executive dysfunction was a prominent finding in the neuropsychological profiles of our sample of squalor patients, regardless of their underlying medical or psychiatric diagnoses. Our study highlights the importance of considering executive dysfunction when assessing patients who live in squalor. 29 Key words: squalor, hoarding, neuropsychology, frontal, executive function Introduction People who live in squalor present an intriguing set of complex problems that pose clinical, social, and ethical challenges, particularly given that assistance is infrequently sought or vehemently refused. Severe domestic squalor refers to living environments that are so unclean, messy, and unhygienic that people of similar culture and background would consider extensive clearing and cleaning to be essential (Snowdon et al., 2012). A dichotomy exists among healthcare professionals that leads to either noninterventional or paternalistic approaches toward Correspondence should be addressed to: Stephen Macfarlane, Associate Professor, Aged Psychiatry Services, Caulfield Hospital, 260 Kooyong Road, Caulfield 3162, Victoria, Australia. Phone: ; Fax: s.macfarlane@cgmc.org.au. Received 11 Sep 2013; revision requested 10 Oct 2013; revised version received 5 Dec 2013; accepted 12 Dec the person living in squalor. The former approach is 42 based on the belief that the person is an autonomous 43 individual who has the right to lead the lifestyle of 44 their choice, while the latter results from viewing 45 an individual as lacking capacity to make decisions 46 about their living conditions. 47 Squalor is not recognized as a distinct disorder 48 in the Diagnostic and Statistical Manual of 49 Mental Disorders Fifth Edition (DSM 5; American 50 Psychiatric Association, 2013) and is presented 51 heterogeneously, often in conjunction with a 52 separate primary diagnosis. Symptoms of extreme 53 self-neglect, squalor, social withdrawal, apathy, 54 syllogomania (pathological hoarding of rubbish), 55 and lack of shame have been described as features 56 of many psychiatric and general medical conditions, 57 including personality disorder, dementia, alcohol- 58 related brain injury, physical disability, obsessive 59 Q3

7 2 S. M. Lee et al compulsive disorder, and intellectual impairment (Reifler, 1996; Drummond et al., 1997; Williams et al., 1998; Snowdon and Halliday, 2011). The labeling of this cluster of symptoms as Diogenes Syndrome (Clark et al., 1975; Cybulska and Rucinski, 1986) has caused consternation as it was felt that the arching principles of Diogenes, the philosopher, which were autonomy through selfsufficiency and contentment unrelated to material possessions, were misrepresented (Reifler, 1996; Snowdon, 1997). Despite some uncertainty about the terminology, frontline community workers instantly recognize a squalid household when they enter the one. Macmillan and Shaw (1966) reported that 47% of community-based participants living in squalor presented with a normal mental state and this received further support by Clark et al. (1975, p. 367) who found that 50% of Diogenes Syndrome patients had high IQ with high levels of intellectual preservation. In more recent years this view has come under some challenge with Wrigley and Cooney (1992, p 40) finding that two-thirds of their sample did not present with a normal mental state, and Halliday et al. (2000) reporting that 70% of their squalor participants, identified through a cleaning service, were diagnosed as having a mental disorder. In a further study, the vast majority (95%) of participants with moderate to severe domestic squalor were found to have dementia, substance abuse, or alcohol-related brain damage, psychiatric, or physical illness (Snowdon and Halliday, 2011). Our clinical experience has led us to observe that individuals who live in squalor frequently exhibit poor initiative, drive, and motivation. We hypothesize that their indifference to their living conditions and unconventional problemsolving are suggestive of executive dysfunction where the frontal lobe-based functions of planning, insight, self-control, and social interaction are impaired (Luria, 1973; Stuss and Benson, 1984; Stuss, 1992; Lezak et al., 2004). Orrell et al. (1989) similarly found that frontal cognitive impairments may be the common denominator in participants living in squalor. Substantial overlap between frontotemporal dementia and Diogenes syndrome and hoarding behavior has been observed (Lebert, 2005) and squalor has been detected in people having dementia characterized by executive dysfunction (Beauchet et al., 2002). In a study of six patients with Mini-Mental State Examination (MMSE) scores of above 24, who were living in squalor, frontal executive dysfunction was the predominant finding, suggesting its central role in squalor (Gregory et al., 2011). People living in squalor resist assessment and treatment (Hanon et al., 2004) and frequently present in crisis situations where a comprehensive 117 cognitive evaluation is not the main priority. 118 This leads to reliance on the MMSE as the 119 sole cognitive assessment, which may not be able 120 to detect subtle impairment (Faustman et al., ) and lacks sensitivity to frontal lobe-based 122 problems of executive function (Malloy et al., ). This study aims to provide an overview of the 124 neuropsychological impairment of a large case series 125 of people that were assessed to be living in squalor. 126 Methods 127 Identification of sample 128 The study was approved by the Human Research 129 Ethics Committee at the lead site, and was advert- 130 ised through a series of oral and poster presentations 131 at conferences and seminars. Clinicians from local 132 health networks were invited to submit reports that 133 detailed the neuropsychological profiles of patients 134 they had assessed during the course of their clinical 135 work who were deemed to be living in squalor. 136 As neuropsychology assessments do not form part 137 of the routine management of squalor, our sample 138 consisted of assessments that were requested based 139 on clinical necessity. 140 Once a clinician indicated an interest in 141 participating in this study, institutional ethics 142 approval was gained from their service and reports 143 were submitted. Following ethics approval in early , clinicians submitted existing reports, and 145 continued to submit new reports on participants of 146 squalor as they presented over the three-year data 147 collection period. Neuropsychological assessments 148 were supplemented by medical record searches, 149 whenever required or possible, in order to obtain 150 information on patients demographics, medical 151 and psychiatric histories, and the results of any 152 neuroimaging studies. 153 Determining the suitability for inclusion 154 As this study used reports generated during 155 normal clinical practice, we did not have a chance 156 to standardize assessments or the assessments 157 used, nor rigidly determine the definitions of 158 squalor. The submitted reports were screened 159 to ensure the presence of a sufficiently detailed 160 description of the home environment to enable 161 the premises to be characterized as squalid. 162 In the absence of universally accepted criteria 163 at the time we commenced this study, a broad 164 definition of squalor was adopted and we looked 165 for indicators such as the need for extensive 166 cleaning, the presence of Occupational Health 167 and Safety concerns, the presence of decaying 168

8 The neuropsychology of squalor organic matter and excrement, vermin infestation, dilapidation, disconnected utilities, and odor. The neuropsychology assessment reports were screened for sufficient details in terms of comprehensive examination of key neuropsychological domains and for the presence of adequate cooperative effort from the patient that are required in such lengthy investigation. Neuropsychology reports were included if they contained examination of basic attention, visuospatial reasoning, information processing speed, memory function, and executive function. The included reports A total of 72 neuropsychology reports and three specialist psychogeriatrician cognitive assessment reports were received from three aged care services and two aged psychiatry services in metropolitan Melbourne. Three medical reports unaccompanied by neuropsychology reports were excluded from analysis. One patient had two neuropsychology reports from two different health services. One report was excluded from analysis on the basis of insufficient documentation of squalor and the other was excluded because the patient did not engage sufficiently to enable formal testing of each cognitive domain. After screening, the neuropsychology reports of 69 individuals (49 from aged care services, 16 from aged psychiatry services, three from acute medical services, and one from a memory clinic) constituted the sample and underwent analysis. Information extracted from reports The reports were reviewed by one of the authors (Sook Meng Lee) and information was extracted across the following categories. Basic demographics, medical history, and physical function Patient s age, gender, marital status, type of accommodation, social support, income source, and education level were recorded. Information on referral sources and on the location of the patient at the time of neuropsychological assessment was gathered. Evidence of hoarding, known medical and psychiatric diagnoses, and level of physical function were recorded. Neuropsychology assessment, MMSE, and neuroimaging We were not able to present results at the test level due to variability in clinical practice; rather we have brought together the neuropsychological opinion of performance in each domain and 219 presented it as a standard dichotomous outcome 220 of Normal or Impaired as documented in 221 the reports. We have also extracted information 222 regarding likely diagnosis, and any comments 223 on insight and capacity. Reduced capacity was 224 inferred if the neuropsychological reports indicated 225 that the person was unable to accept, appreciate, 226 and evaluate information with a demonstrable 227 understanding of its concomitant consequences 228 (Moye and Marson, 2007). In patients where 229 MMSE and neuroimaging data were presented, 230 these results were included in the analysis, and 231 wherever possible, medical records were reviewed 232 for additional or corroborating information. 233 Statistical analysis 234 Descriptive data were presented as mean values, 235 ranges, frequencies, and percentages. Collected 236 data were analyzed for any gender effects and group 237 differences were analyzed using SPSS v18 (SPSS 238 Inc., 2009). α = 0.05 was used to allow for the 239 identification of differences for future prospective 240 work to focus upon. 241 Results 242 Basic demographics, medical history, and 243 physical function 244 Demographic characteristics of the sample are 245 shown in Table 1. Age of the patients ranged from years with a mean age of 72.3 years (SD = ). Twenty per cent of the patients in the 248 sample were aged less than 65 years (n = 14: 249 ten females and four males). There were similar 250 number of males (n = 33, 47.8%) and females 251 (n = 36, 52.2%). Only eight patients (11.6%) 252 were in a current relationship, with the rest being 253 single (34.8%), divorced or separated (31.9%), or 254 widowed (21.7%). Males were more likely than 255 females to be single (24% vs. 13%, χ 2 = 13.4, 256 p < 0.05). The majority were owner or occupiers 257 (59.4%) and lived alone (71.0%). The vast majority 258 (84.1%) had no carers, and 69.6% had no formal 259 services. None were in current employment, and 260 most were on a pension (88.4%). Only a small 261 number were self-funded (8.7%). Three patients 262 had no education, while 65.2% were educated to 263 either secondary or tertiary level. 264 Patients were observed to present with one 265 or more comorbidities, with the most frequently 266 observed being musculoskeletal (40.6%), cardi- 267 ovascular (36.2%), cerebrovascular (34.8%), or 268 a urinary tract disease (31.9%). One-third of 269 the sample (32.4%) was recorded as having 270

9 4 S. M. Lee et al. Table 1. General demographics of the sample Age Living situation, n (%) Mean = (SD = 11.33) Owner 41 (59.4%) Male/Female (%) Public housing 21 (30.4%) 47.8/52.2 Private rental 7 (10.1%) Marital status, n (%) Accommodation type, n (%) Single 24 (34.8%) House 38 (55.1%) Divorced/separated 22 (31.9%) Flat 25 (36.2%) Widowed 15 (21.7%) Caravan 3 (4.3%) Married/de facto 8 (11.6%) Rooming house 1 (1.4%) Income, n (%) Missing information 2 (2.8%) Pension 61 (88.4%) Has family, n (%) Self-Funded 6 (8.7%) No 22 (31.9%) Other 2 (2.9%) Yes 47 (68.1%) Education, n (%) If Yes, is family involved? Nil 3 (4.3%) Yes 11 (23.9%) Primary 20 (29.0%) No 35 (76.1%) Secondary 33 (47.8%) Engaged with formal services, n(%) Tertiary 10 (14.5%) Yes 21 (30.4%) Not reported 3 (4.3%) No 48 (69.6%) normal physical function. Known visual (17.4%) and hearing impairments (10.1%) were relatively common and at rates in keeping with previous work (Macmillan and Shaw, 1966). Yet these were likely to be under-reported in our sample, as they were not assessed specifically. Alcohol and substance abuse were only reported in 50.72%, and 18.8% of the sample respectively; where these were assessed, alcohol abuse affected 71.4% of the sample, and substance abuse was reported in 30.7%. Patients were referred for neuropsychological assessment via a number of routes. None of the patients were self-referred, and quite a number were referred by neighbors (8.7%), in-home communitybased services (17.4%), or hospital-based aged care outreach services (31.9%). The majority were referred for neuropsychology assessments during inpatient admissions (72.5%) and underwent their assessment in hospital (68%). Patients were presented to hospital for multiple reasons, including extreme self-neglect and poor nutrition, fractured neck of femur, hepatic encephalopathy, strokes, and non-healing leg ulcers. Psychological and psychiatric history The reported frequency for affective disorders was 36.2%, anxiety disorders 7.2%, and schizophrenia 11.6%. Fourteen patients (20.3%) had known personality disorders, and 23.2% of the sample was reported to have experienced psychological trauma resulting from either physical or sexual abuse. Self-neglect, squalor, and hoarding All the patients in our sample were known to live in squalor at the time of neuropsychology assessment with nearly all (95.7%) showed signs of self-neglect. 304 The reports indicated that 40.5% of the sample had 305 hoarding behaviors that preceded squalor 306 Neuropsychology assessment 307 The majority of the sample (77%) was estimated 308 to have been of average or higher premorbid 309 intelligence and 57.9% were fully oriented to time, 310 person, and place. MMSE data were available for patients and the mean score was (SD = 3.96). 312 Most of the patients (72.5%) did not understand the 313 reason for the neuropsychological assessment and 314 nearly all the sample (92.8%) lacked insight into 315 their domestic situation. The neuropsychological 316 reports showed that 89.6% of the sample evidenced 317 poor capacity. Over three-quarters of the sample 318 (78.3%) were not agreeable to intervention, and 319 application for the appointment of a guardian was 320 recommended in 66.7% of the patients. 321 Neuropsychological assessment data are sum- 322 marized in Table 2. One-third of the patients 323 (33.3%) had a normal basic attentional level 324 and 32.0% had normal visuospatial reasoning. 325 Information processing speed was normal in only % with 66.2% of the patients assessed as 327 having significant slowing. Memory was assessed 328 across three modalities. Over 80% of the sample 329 had impairments in tests of new learning (84.1%) 330 and information retrieval (81.2%), although rapid 331 forgetting was not as widely reported (34.8%). 332 The majority of the patients (92.8%) showed 333 some level of executive dysfunction with 44.9% 334 considered significantly impaired and 30.4% 335 moderately impaired. Impairments were noted in 336 abstraction (85.5% of patients), verbal fluency 337

10 The neuropsychology of squalor Table 2. Neuropsychological domains, capacity, and insight N (%) DOMAIN NORMAL IMPAIRED... Information processing speed 8 (11.8%) 60 (88.2%) Basic attentional level 23 (33.3%) 46 (66.7%) Visuospatial reasoning 22 (31.9%) 47 (68.1%) Communication 36 (52.2%) 33 (47.8%) Memory Function New learning 11 (15.9%) 58 (84.1%) Retrieval difficulties 13 (18.8%) 56 (81.2%) Rapid forgetting 45 (65.2%) 24 (34.8%) Executive function Abstraction 10 (14.5%) 59 (85.5%) Verbal fluency 12 (17.6%) 56 (82.4%) Higher attentional skills 8 (12.9%) 61 (88.4%) Planning 11 (15.9%) 58 (84.1%) Organization 12 (17.4%) 57 (82.6%) Problem-solving 12 (17.6%) 56 (82.4%) General reasoning 16 (23.2%) 53 (76.8%) Mental flexibility 9 (13.0%) 60 (87.0%) Impulsivity 40 (58.0%) 29 (42.0%) Sexual disinhibition 64 (92.8%) 5 (7.2%) Overfamiliarity 52 (75.3%) 17 (24.6%) Insight 5 (7.2%) 64 (92.8%) Table 3. Neuropsychological opinions NEUROPSYCHOLOGY OPINION N (%)... Normal 1 (1.4%) Vascular cause 30 (43.5%) Alcohol related 16 (23.1%) Psychiatric 10 (14.5%) Dementia (other than vascular) 10 (14.5%) Intellectual impairment 4 (5.8%) Acquired brain injury 4 (5.8%) Medical 2 (2.9%) Executive function Normal 5 (7.2%) Impaired 64 (92.8%) (82.4%), higher attentional skills (88.4%), planning (84.1%), organizational skills (82.6%), problemsolving (82.4%), general reasoning (76.8%), and mental flexibility (87.0%). Forty-two per cent of the patients showed signs of impulsivity, 7.2% were sexually disinhibited, and 24.6% were overfamiliar. Communication was relatively well preserved with 76.8% of the patients assessed as having normal function or only mild impairment. There were no significant differences between genders across the various neuropsychological domains. Neuropsychological opinions are summarized in Table 3. Underlying aetiologies that were implicated for the deficits present included vascular Table 4. Available neuroimaging results (n = 38) N (%)... Normal 3 (7.9%) Vascular changes 24 (63.2%) General atrophy 3 (7.9%) Vascular and general atrophy 3 (7.9%) Regional atrophy 5 (13.2%) causes (n = 30, 43.5%), alcohol (n = 16, 23.1%), 352 psychiatric conditions (n = 10, 14.5%), and 353 dementia other than vascular (n = 10, 14.5%). 354 In only one patient, a hoarder, neuropsychology 355 assessment failed to identify any abnormalities. In patients, mixed aetiologies were implicated. Five 357 out of the 69 patients were considered to have 358 normal executive function and all of these had 359 symptoms of hoarding preceding the development 360 of squalor. 361 Neuroimaging results for 38 participants 362 were available for analysis (Table 4). Computed 363 tomography (CT) brain scans were the most 364 frequent investigation performed (n = 34). One 365 of the patients underwent single photon emission 366 computed tomography (SPECT), which showed 367 non-specific cerebral atrophy and it was likely that 368 a CT brain scan was also conducted but we were 369 unable to locate it. His neuropsychology assessment 370 was suggestive of frontotemporal dementia. One 371 patient had CT brain, magnetic resonance imaging 372 (MRI), and positron emission tomography (PET) 373 scan, all of which were normal. She had a diagnosis 374 of schizophrenia and was found living in squalor 375 unrelated to hoarding. The three patients who 376 had MRI were likely to have had CT brains as 377 well, but we were unable to locate the results. 378 Three patients had normal neuroimaging results. 379 Vascular changes, including periventricular white 380 matter ischaemia, lacunar infarcts, and territorial 381 infarcts, were reported in 27 of the 38 patients. 382 Of the 13 patients with territorial infarcts, involved the frontal lobes. Atrophy was reported 384 in 11 instances: non-specific atrophy in six, and 385 regional atrophy, including frontotemporal and 386 frontal-parietal atrophy, in five patients. 387 Discussion 388 This is one of the few studies to investigate 389 the neuropsychological profiles of people who 390 live in squalor. The results show that squalor is 391 associated with impaired cognition across a number 392 of domains, with the most prominent finding being 393 executive impairment, essentially a dysfunction of 394 planning, insight, self-control, and social interaction 395 Q4

11 6 S. M. Lee et al Q (Luria, 1973; Stuss and Benson, 1984; Stuss, 1992; Lezak et al., 2004). Memory performance lent further support with the pattern of greater retrieval difficulties compared with rapid forgetting on the memory domain indicative of executive dysfunction (Kopelman, 2002). Executive function is primarily attributed to the frontal lobes, and the impaired higher order executive processes seen here indicate the involvement of the dorsolateral-prefrontal cortex (DL-PFC) (Funahashi, 2001). Orbitofrontal involvement appears less likely as impulsivity, sexual inappropriateness, and overfamiliarity were not as common (Berlin et al., 2005). This pattern of impairment supports previous work (Gregory et al., 2011). The sample can be summarized as being elderly, single, and living alone with a low level of formal service engagement and little family involvement. The majority (77%) had at least an average level of premorbid intelligence and, where it was available, high MMSE scores (n = 52, M = 25.29, SD = 3.96). Despite this, nearly all the patients showed signs of self-neglect (97%) and lacked insight (93%). None in the sample was selfreferred for assessment, 78% of the patients were not agreeable to intervention, and 90% could be regarded as lacking capacity. Hoarding behavior was comorbid with squalor in 40% of the participants. The neuropsychological assessments demonstrated problems with executive dysfunction in 93% of the sample. Of the neuropsychological domains that were assessed, communication was relatively well preserved. Presence of good verbal skills, and thus a tendency of patients to be articulate and present well, along with high MMSE scores, may confound inexperienced assessors. It may seem incongruous that the sample can present with a relatively high MMSE score and yet lack capacity and insight; however, this pattern of results strongly illustrates that the MMSE score is not sensitive to the presence of executive impairment. Vascular disease was the most common underlying pathological process (43%) proposed by neuropsychologists in our study, and was supported with 71% of the 38 patients where neuroimaging was available showing vascular abnormality, including periventricular white matter ischaemia, lacunar infarcts, and territorial infarcts. The neuroimaging findings cannot be interpreted in isolation, given that a high background rate of cerebral white matter lesions would be expected in this age group (de Leeuw et al., 2001). A number of limitations need to be considered when interpreting the findings presented here. The first revolve around the study sample. As this study relied on the submission of selected clinical reports with its attendant risk of recall bias, and the majority of the assessments (68%) were conducted 453 during an inpatient admission, the sample may not 454 be representative of community dwelling people 455 living in squalor. It is also possible that this 456 sample only represents a proportion of hospital 457 patients who live in squalor, as a neuropsychology 458 assessment would only be required for participants 459 needing a mental capacity determination to a 460 high level of certainty. Those with a clearer 461 cognitive profile would not have required a 462 neuropsychological assessment. The study design 463 imposed some further restrictions as we were unable 464 to standardize the neuropsychological assessments; 465 however, the reports indicated that participating 466 neuropsychologists adopted similar psychometric 467 testing and reporting methods in relation to 468 various cognitive domains. These limitations need 469 to be balanced against the problems inherent 470 in conducting home-based neuropsychological 471 assessments in squalid conditions, the extreme 472 difficulty in working with people in the community 473 who live in squalor, and the low likelihood of 474 obtaining consent to involve them in a prospective 475 research study. Capacity is not routinely assessed 476 and can be global, but is increasingly recognized 477 as being context-dependent. The basic principles 478 of capacity are well known and include the need 479 for a person to be in possession of all information 480 relevant to the decision at hand, and to be able to 481 understand and evaluate that information with an 482 awareness of the benefits and risks associated with 483 their choices (Moye and Marson, 2007). In this 484 study 89.6% of the respondents were judged not 485 to meet these criteria. 486 While there are limitations that temper the 487 strength of our conclusions, the results highlight 488 the clinical importance of assessing executive 489 function in those living in squalor. This will allow 490 treatments, interventions, and behavioral manage- 491 ment strategies to be appropriately implemented. 492 At present there are no standard guidelines for 493 the management of patients living in squalor 494 and neuropsychology assessment does not form 495 part of routine management. The results indicate 496 that cognitive screening using the MMSE is not 497 adequate and should at the least be supplemented 498 by assessment of frontal executive function. 499 Conclusions 500 People with impaired insight are frequently difficult 501 to engage, and efforts to collaboratively work with 502 people who live in squalor often fail for this reason. 503 While it might be conceivable for a person to 504 truly wish to live in unsanitary conditions, such 505 participants are likely to be extremely rare, and 506

12 The neuropsychology of squalor it is more likely that squalor represents a loss of capacity. While the principles of autonomy and selfdetermination must be respected, it is inappropriate to invoke the fig leaf approach to management in circumstances where an adequate cognitive assessment has not, in fact, been performed. Many clinicians rightly feel uncomfortable in pursuing coercive treatment pathways in relation to those living in squalor. The results of our study highlight the important role of executive impairment in those living in squalor and indicate that these options should not be disregarded entirely, particularly considering the lack of insight and concerns about capacity. The MMSE is clearly insufficient to detect the executive function impairment evidenced in this group. While a full neuropsychological assessment is expensive and may not be readily available, clinicians asked to assess those living in squalor should be familiar with a comprehensive suite of bedside tests of frontal executive function, with which to inform management or prompt consideration of more detailed neuropsychological testing. Future research would benefit by conducting a more rigidly controlled prospective study that includes community dwelling people who live in squalor and healthy controls, conducting more extensive neuroimaging to gain a better understanding of this condition. Conflict of interest None. Description of author s roles Sook Meng Lee transcribed data from neuropsychology reports and medical files, analyzed the data, and wrote the paper. Matthew Lewis assisted with statistical analysis and in preparing the paper for publication. Deborah Leighton, Ben Harris, and Brian Long submitted more than eight reports each and provided neuropsychology advice toward the paper. Stephen Macfarlane initiated and designed the study, supervised data collection, and cowrote the paper. Acknowledgments We would like to thank Inna Brodsky, Asawari Henderson, Jo-Anne Buchanan, Jennifer McDowall, Jane Khoo, Chris Hutchinson, Natalie Genardini, and Rosario Lina Forlano for submitting neuropsychology reports. We would also like to thank Melissa Lin and Remina Doh for compiling case notes for the Caulfield Hospital sample. References 556 American Psychiatric Association. (2013). Diagnostic and 557 Statistical Manual of Mental Disorders: DSM-5. Arlington, 558 VA: American Psychiatric Association. 559 Beauchet, O. et al. (2002). Diogenes syndrome in the 560 elderly: clinical form of frontal dysfunction? Report of cases. Revue de Medecine Interne, 23, Berlin,H.A.,Rolls,E.T.andIversen,S.D.(2005). 563 Borderline personality disorder, impulsivity, and the 564 orbitofrontal cortex. American Journal of Psychiatry, 162, Clark,A.N.,Mankikar,G.D.andGray,I.(1975). 567 Diogenes syndrome. A clinical study of gross neglect in old 568 age. Lancet, 1, Cybulska, E. and Rucinski, J. (1986). Gross self-neglect in 570 old age. British Journal of Hospital Medicine, 36, de Leeuw, F. E. et al. (2001). Prevalence of cerebral white 572 matter lesions in elderly people: a population based 573 magnetic resonance imaging study. The Rotterdam Scan 574 Study. Journal of Neurology, Neurosurgery, and Psychiatry, , Drummond, L. M., Turner, J. and Reid, S. (1997). 577 Diogenes syndrome: a load of old rubbish? Irish Journal of 578 Psychological Medicine, 14, Faustman, W. O., Moses, J. A., Jr. and Csernansky, J. G. 580 (1990). Limitations of the Mini-Mental State Examination 581 in predicting neuropsychological functioning in a 582 psychiatric sample. Acta Psychiatrica Scandinavica, 81, Funahashi, S. (2001). Neuronal mechanisms of executive 585 control by the prefrontal cortex. Neuroscience Research, 39, Gregory, C., Halliday, G., Hodges, J. and Snowdon, J. 588 (2011). Living in squalor: neuropsychological function, 589 emotional processing and squalor perception in patients 590 found living in squalor. International Psychogeriatrics, 23, Halliday, G., Banerjee, S., Philpot, M. and Macdonald, 593 A. (2000). Community study of people who live in squalor. 594 Lancet, 355, Hanon, C., Pinquier, C., Gaddour, N., Said, S., Mathis, 596 D. and Pellerin, J. (2004). Diogenes syndrome: a 597 transnosographic approach. Encephale, 30, Kopelman, M. D. (2002). Disorders of memory. Brain, 125, Lebert, F. (2005). Diogene syndrome, a clinical presentation 601 of fronto-temporal dementia or not? International Journal of 602 Geriatric Psychiatry, 20, Lezak,M.D.,Howieson,D.B.andLoring,D.W. 604 (2004). Neuropsychological Assessment. Oxford, UK: Oxford 605 University Press. 606 Luria, A. R. (1973). The Working Brain. New York, NY: 607 Basic Books. 608 Macmillan, D. and Shaw, P. (1966). Senile breakdown in 609 standards of personal and environmental cleanliness. British 610 Medical Journal, 2, Malloy, P. F. et al. (1997). Cognitive screening instruments 612 in neuropsychiatry: a report of the Committee on Research 613 of the American Neuropsychiatric Association. Journal of 614 Neuropsychiatry and Clinical Neurosciences, 9,

13 8 S. M. Lee et al Moye,J.andMarson,D.C.(2007). Assessment of decision-making capacity in older adults: an emerging area of practice and research. Journals of Gerontology Series B Psychological Sciences & Social Sciences, 62, P3 P11. Orrell, M. W., Sahakian, B. J. and Bergmann, K. (1989). Self-neglect and frontal lobe dysfunction. The British Journal of Psychiatry, 155, Reifler,B.V.(1996). Diogenes syndrome: of omelettes and souffles. Journal of the American Geriatrics Society, 44, Snowdon, J. (1997). Squalor syndrome. Journal of the American Geriatrics Society, 45, Snowdon, J. and Halliday, G. (2011). A study of severe domestic squalor: 173 cases referred to an old age psychiatry service. International Psychogeriatrics, 23, Snowdon, J., Halliday, G. and Banerjee, S. (2012). Severe 633 Domestic Squalor. Cambridge, UK: Cambridge University 634 Press. 635 Stuss, D. T. (1992). Biological and psychological 636 development of executive functions. Brain and Cognition, , Stuss, D. T. and Benson, D. F. (1984). Neuropsychological 639 studies of the frontal lobes. Psychological Bulletin, 95, Williams, H., Clarke, R., Fashola, Y. and Holt, G. 642 (1998). Diogenes syndrome in patients with intellectual 643 disability: a rose by any other name? Journal of Intellectual 644 Disability Research, 42, Wrigley, M. and Cooney, C. (1992). Diogenes syndrome: 646 an Irish series. Irish Journal of Psychological Medicine, 9,