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Prevalence and Characteristics of Hoarding Behaviour and Domestic Squalor among Adults with Mild Intellectual Disability Receiving Residential or Outpatient Care

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Title: Prevalence and Characteristics of Hoarding Behaviour and Domestic Squalor among Adults with Mild Intellectual Disability Receiving Residential or Outpatient Care
Language: English
Authors: Hendrien Kaal (ORCID 0009-0004-4585-0540), David Gast, Jacob Scholte ter Horst
Source: Journal of Applied Research in Intellectual Disabilities. 2025 38(4).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 11
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Behavior Disorders, Incidence, Adults, Mild Intellectual Disability, Foreign Countries, Residential Care, Patients, Health
Geographic Terms: Netherlands
DOI: 10.1111/jar.70089
ISSN: 1360-2322
1468-3148
Abstract: Background: To date, no studies have examined the prevalence of hoarding behaviour and domestic squalor among individuals with mild intellectual disability. To address this gap, we conducted a prevalence study within a population supported by a medium-sized care organisation in the Netherlands. Method: Data were collected on 437 individuals with mild intellectual disability receiving care in residential facilities or through outpatient services. Assessments were conducted using the Hoarding Rating Scale-Interview, the Environmental Cleanliness and Clutter Scale, and the Clutter Image Rating Scale. Results: Hoarding behaviour and/or domestic squalor were observed in 16.8% of the residents. Support staff identified 8.3% of dwellings as posing significant safety risks or health hazards. Additionally, 6.7% of residents had been threatened with eviction due to hoarding or squalor. Conclusions: Hoarding behaviour and domestic squalor appear to be more prevalent among individuals with mild intellectual disability in care settings than among the overall population.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1481324
Database: ERIC
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  Value: <anid>AN0187526533;e0301jul.25;2025Aug28.05:02;v2.2.500</anid> <title id="AN0187526533-1">Prevalence and Characteristics of Hoarding Behaviour and Domestic Squalor Among Adults With Mild Intellectual Disability Receiving Residential or Outpatient Care </title> <p>Background: To date, no studies have examined the prevalence of hoarding behaviour and domestic squalor among individuals with mild intellectual disability. To address this gap, we conducted a prevalence study within a population supported by a medium‐sized care organisation in the Netherlands. Method: Data were collected on 437 individuals with mild intellectual disability receiving care in residential facilities or through outpatient services. Assessments were conducted using the Hoarding Rating Scale‐Interview, the Environmental Cleanliness and Clutter Scale, and the Clutter Image Rating Scale. Results: Hoarding behaviour and/or domestic squalor were observed in 16.8% of the residents. Support staff identified 8.3% of dwellings as posing significant safety risks or health hazards. Additionally, 6.7% of residents had been threatened with eviction due to hoarding or squalor. Conclusions: Hoarding behaviour and domestic squalor appear to be more prevalent among individuals with mild intellectual disability in care settings than among the overall population.</p> <p></p> <ulist> <item> Hoarding behaviour and domestic squalor appear to be more prevalent among service users with mild intellectual disability than in the general population.</item> <p></p> <item> Hoarding and squalor can have significant impacts on the lives of residents and their environments.</item> <p></p> <item> Given the potential scale of these problems, increased attention to hoarding and squalor among people with mild intellectual disability is warranted.</item> </ulist> <p>Summary</p> <hd id="AN0187526533-2">Background</hd> <p>Hoarding behaviour and domestic squalor present significant challenges for professionals providing care to individuals with mild intellectual disabilities (Kaal and Gast [<reflink idref="bib22" id="ref1">22</reflink>]). In some cases, excessive clutter in homes severely limits the available space for essential activities such as eating, sleeping, or receiving visitors. The accumulation of items can render basic household tasks such as cooking and washing difficult or even impossible. The presence of food scraps, faeces, and vermin can pose significant health risks, whereas clutter increases the likelihood of trip or fire hazards (Kysow et al. [<reflink idref="bib24" id="ref2">24</reflink>]). Feelings of shame and the uninviting nature of the home can lead to social isolation (Edwards et al. [<reflink idref="bib12" id="ref3">12</reflink>]). In extreme cases, these issues may lead to eviction or homelessness (Tsai and Huang [<reflink idref="bib46" id="ref4">46</reflink>]). Homes filled with possessions or filth can thus endanger the functioning, well‐being, and safety of both residents and those around them (Bratiotis et al. [<reflink idref="bib6" id="ref5">6</reflink>]). Hoarding behaviour is associated with lower health‐related quality of life (Tolin et al. [<reflink idref="bib45" id="ref6">45</reflink>]). A considerable proportion of individuals affected by hoarding and/or squalor rarely seek professional help (Prosser et al. [<reflink idref="bib33" id="ref7">33</reflink>]; Rodriguez et al. [<reflink idref="bib34" id="ref8">34</reflink>]). Support staff working in such environments may struggle to balance the need to maintain a safe and sanitary living space with the resident's right to autonomy (Kaal and Gast [<reflink idref="bib22" id="ref9">22</reflink>]).</p> <p>Hoarding behaviour is characterised by difficulty discarding possessions, regardless of whether those items are considered valuable by others (Jagannathan and Chasson [<reflink idref="bib21" id="ref10">21</reflink>]). As a result, large areas of the home are often filled with accumulated items (Tolin et al. [<reflink idref="bib43" id="ref11">43</reflink>]). A vast majority of individuals who exhibit hoarding behaviour also engage in excessive acquisition, which involves buying, receiving, and occasionally stealing items (Turna et al. [<reflink idref="bib47" id="ref12">47</reflink>]). According to the DSM‐5, hoarding disorder is diagnosed when persistent difficulty discarding possessions—combined with a perceived need to save them—results in cluttered living spaces, clinically significant distress, and impaired daily functioning, and cannot be better explained by another medical condition or mental disorder (American Psychiatric Association [<reflink idref="bib2" id="ref13">2</reflink>]). Diagnosing hoarding disorder in individuals with mild intellectual disability is complicated by insufficient knowledge about the extent to which hoarding behaviour may arise as a secondary effect of (mild) intellectual disabilities (Jagannathan and Chasson [<reflink idref="bib21" id="ref14">21</reflink>]). Therefore, in this study, we investigated hoarding behaviour rather than hoarding disorder.</p> <p>The term 'severe domestic squalor' refers to living conditions 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. [<reflink idref="bib37" id="ref15">37</reflink>], 12). This may result either from the accumulation of useless items obstructing proper care of the living environment or from the failure to get rid of them. In severe cases, the situation evokes feelings of disgust in visitors (Snowdon et al. [<reflink idref="bib36" id="ref16">36</reflink>]). Severe domestic squalor is more common in older adults and is often associated with cognitive impairment (Gleason et al. [<reflink idref="bib14" id="ref17">14</reflink>]). When squalor reflects broader self‐neglect in health and hygiene, coupled with social isolation and an absence of shame, it is referred to as 'Diogenes syndrome' (Proctor and Rahman [<reflink idref="bib32" id="ref18">32</reflink>]). However, severe domestic squalor or Diogenes syndrome is not classified as a disorder in the DSM‐5 because these behaviours are usually attributed to other psychiatric conditions, such as dementia, alcohol and drug misuse, affective disorders, psychotic disorders, autism spectrum disorder, and intellectual disabilities.</p> <p>Insight into the prevalence of hoarding and domestic squalor remains limited. People with hoarding disorder often lack awareness of their condition and are reluctant to seek help, making accurate prevalence estimates difficult (Turna et al. [<reflink idref="bib47" id="ref19">47</reflink>]; Van Roessel et al. [<reflink idref="bib50" id="ref20">50</reflink>]). A meta‐analysis of the prevalence of hoarding disorder among adults in the Western world reported a rate of 2.5% (Postlethwaite et al. [<reflink idref="bib31" id="ref21">31</reflink>]). However, rates may be significantly higher in specific populations. One study of adult psychiatric inpatients, for instance, found a prevalence of 33% (Basu et al. [<reflink idref="bib3" id="ref22">3</reflink>]). Research on the prevalence of domestic squalor is even sparser. Most available studies focus on older adults, with prevalence estimates ranging from 0.02% to 1.12% (Lee et al. [<reflink idref="bib25" id="ref23">25</reflink>]; Snowdon and Halliday [<reflink idref="bib35" id="ref24">35</reflink>]). Using data from the English Housing Survey, Norton et al. ([<reflink idref="bib29" id="ref25">29</reflink>]) reported a prevalence of 0.85% in a sample of randomly selected households in the United Kingdom. The difference in prevalence figures is not only due to the different target groups but also to the inconsistencies in definitions and operationalisations of the constructs. Although under‐researched, there seems to be a substantial overlap between hoarding and squalor. For instance, Lee et al. ([<reflink idref="bib25" id="ref26">25</reflink>]) and Snowdon et al. ([<reflink idref="bib38" id="ref27">38</reflink>]) found that 40% of people living in squalor also displayed hoarding behaviour, while Snowdon et al. ([<reflink idref="bib38" id="ref28">38</reflink>]) and Steketee et al. ([<reflink idref="bib39" id="ref29">39</reflink>]) found that 44% and 56% of individuals with hoarding behaviour, respectively, also lived in squalor. The combination of hoarding and squalor may increase the risks associated with each condition (Luu et al. [<reflink idref="bib27" id="ref30">27</reflink>]).</p> <p>Limited research has been done on the combination of (mild) intellectual disability and hoarding behaviour or domestic squalor. Williams et al. ([<reflink idref="bib51" id="ref31">51</reflink>]) and Boyd and Alexander ([<reflink idref="bib5" id="ref32">5</reflink>]) published case descriptions of individuals with intellectual disabilities and Diogenes syndrome. Three studies examined the treatment of hoarding in people with intellectual disabilities: Van Houten and Rolider ([<reflink idref="bib49" id="ref33">49</reflink>]) investigated the use of delayed punishment by recreating hoarding scenarios for a 17‐year‐old girl with an IQ of 70; Berry and Schell ([<reflink idref="bib4" id="ref34">4</reflink>]) examined reinforcement and item return in a multiple baseline study involving three persons with severe intellectual disabilities and hoarding behaviour. Kellett et al. ([<reflink idref="bib23" id="ref35">23</reflink>]) examined the acceptability and effectiveness of cognitive behavioural therapy among 14 adults with mild intellectual disability and hoarding disorders. Additionally, numerous studies have linked food‐related hoarding to Prader–Willi syndrome (PWS) (e.g., Dykens et al. [<reflink idref="bib11" id="ref36">11</reflink>]; Clarke et al. [<reflink idref="bib9" id="ref37">9</reflink>]; Novell‐Alsina et al. [<reflink idref="bib30" id="ref38">30</reflink>]).</p> <p>To the best of our knowledge, no studies have been published on the prevalence of domestic squalor and hoarding among individuals with mild intellectual disabilities. Halliday et al. ([<reflink idref="bib19" id="ref39">19</reflink>]) found that 11% of individuals living in squalor had learning disabilities or developmental disorders, although these were not clearly defined. Testa et al. ([<reflink idref="bib40" id="ref40">40</reflink>]) examined hoarding behaviour in a group of children with learning disabilities. However, the term 'learning disability' was broadly defined to include cognitive, language and motor skills impairments, and the average IQ score of the children in the study was approximately 85. In general, people with a mild intellectual disability have at least a higher, if not a greater, risk of mental health problems than people without a mild intellectual disability (Mazza et al. [<reflink idref="bib28" id="ref41">28</reflink>]). It may, therefore, be hypothesized that hoarding is also more prevalent among people with mild intellectual disability. In addition, such individuals are known to experience greater difficulties with executive functioning and neurocognitive impairments. The growing body of literature has established links between executive functioning deficit and squalor (Aamodt et al. [<reflink idref="bib1" id="ref42">1</reflink>]; Gregory et al. [<reflink idref="bib16" id="ref43">16</reflink>]; Schillerstrom et al. 2009 in Luu et al. [<reflink idref="bib27" id="ref44">27</reflink>]) and between neurocognitive impairments and hoarding behaviour. These findings therefore, support the expectation that hoarding behaviour and domestic squalor occur relatively often in the mild intellectual disability target group.</p> <p>The present study aimed to examine the prevalence and nature of hoarding behaviour and domestic squalor among individuals with mild intellectual disabilities in a care setting. Furthermore, the study aimed to investigate the impact of these behaviours on the safety and stability of their living situations.</p> <hd id="AN0187526533-3">Method</hd> <p></p> <hd id="AN0187526533-4">Research Subjects</hd> <p>The research was conducted through a collaborative partnership between a Dutch care organisation (Middin) and Leiden University of Applied Sciences (LUAS). Middin supports over 5500 clients across the province of South Holland, including individuals with intellectual disabilities, physical disabilities, multiple severe disabilities, behavioural challenges, and acquired brain injuries. Of these, 1100 receive care in residential accommodations. Middin provides personalised support across various life domains, including housing, work, education, leisure, and personal care, both at home and on site. The organisation also facilitates employment, educational support, and childcare services and collaborates closely with clients to tailor care according to their individual needs and preferences.</p> <p>For this study, data were collected from clients receiving care in residential facilities and from outpatient teams primarily serving individuals with mild intellectual disabilities. In the Netherlands, the term 'mild intellectual disability' is generally used for people with an IQ between 50 and 85, combined with a significant impairment in adaptive functioning that hinder independent living. In this study, we use the term 'mild intellectual disability' for this broad group. The names of all 636 clients receiving care from specialised mild intellectual disability teams within Middin were provided by the organisation. Clients were excluded from the study if they did not have an IQ score between 50 and 85 (<emph>n</emph> = 52), were younger than 18 years of age (<emph>n</emph> = 3), did not live in their own home (e.g., with parents or homeless) (<emph>n</emph> = 26), or had been living in their current home for less than 3 months (<emph>n</emph> = 20). Additionally, 21 clients were excluded as they were no longer in the care of the team at the time of the study. Of the 514 remaining potential subjects, 27 clients opted out of participation. For six participants, the support staff indicated that they had never been inside the client's house or room. A further 44 questionnaires were not returned by the support staff. Eventually, data were gathered from 437 clients across 13 residential locations (care homes and clustered living) and two care outreach teams, resulting in a response rate of 85%. The sociodemographic characteristics of the participants are presented in Table 1.</p> <p>1 TABLE Sociodemographic characteristics.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center"><italic>n</italic></th><th align="center">%</th></tr></thead><tbody valign="top"><tr><td align="left">Gender (N = 437)</td></tr><tr><td align="left">Female</td><td align="center">176</td><td align="center">40.3</td></tr><tr><td align="left">Male</td><td align="center">261</td><td align="center">59.7</td></tr><tr><td align="left">IQ score (N = 437)</td></tr><tr><td align="left">50–75</td><td align="center">330</td><td align="center">75.5</td></tr><tr><td align="left">76–85</td><td align="center">90</td><td align="center">20.6</td></tr><tr><td align="left">Exact IQ unknown (but between 50 and 85)</td><td align="center">17</td><td align="center">3.9</td></tr><tr><td align="left">Age (N = 435)</td></tr><tr><td align="left">18–25 years</td><td align="center">60</td><td align="center">13.8</td></tr><tr><td align="left">26–40 years</td><td align="center">166</td><td align="center">38.2</td></tr><tr><td align="left">41–60 years</td><td align="center">163</td><td align="center">37.5</td></tr><tr><td align="left">60+ years</td><td align="center">46</td><td align="center">10.6</td></tr><tr><td align="left">Care/living situation (N = 433)</td></tr><tr><td align="left">Living in residential care home</td><td align="center">168</td><td align="center">38.8</td></tr><tr><td align="left">Clustered living, care nearby<xref ref-type="fn" rid="tfn2" /></td><td align="center">109</td><td align="center">25.2</td></tr><tr><td align="left">Own home (bought/rented), outreach care</td><td align="center">156</td><td align="center">36.0</td></tr><tr><td align="left">Time in current dwelling (N = 437)</td></tr><tr><td align="left">3–12 months</td><td align="center">29</td><td align="center">6.6</td></tr><tr><td align="left">1–2 years</td><td align="center">74</td><td align="center">16.9</td></tr><tr><td align="left">2–5 years</td><td align="center">149</td><td align="center">34.1</td></tr><tr><td align="left">> 5 years</td><td align="center">185</td><td align="center">42.3</td></tr><tr><td align="left">Physical problems affecting house cleaning, judged by care‐giver (N = 363)</td><td align="center">43</td><td align="center">11.8</td></tr><tr><td align="left">(Suspected) mental health problems, judged by care‐giver (N = 366)</td><td align="center">131</td><td align="center">64.2</td></tr></tbody></table> </ephtml> </p> <p>1 <emph>Note:</emph> Because of missing values for some of the items, the number of respondents (<emph>N</emph>) for those items was lower than the total of 437 clients included in the study.</p> <p>2 a Clustered living refers to housing arrangements in which individuals without care needs reside alongside those receiving support or care. The latter often have access to a central meeting point where shared meals can be organised and other gatherings can take place as needed. Staff members are present at the meeting point during the day to address any questions and also visit clients' homes to provide support.</p> <hd id="AN0187526533-5">Procedure</hd> <p>The data collection period spanned from January to May 2023. An information leaflet was distributed by the care organisation to all clients who met the inclusion criteria. This leaflet explained the purpose of the study and informed clients how they could object to their data being used for the study. Where deemed more appropriate, staff also provided this information orally. If a client did not object to the use of the data, the relevant support staff received an envelope containing a paper questionnaire. At the residential locations, either the personal supervisor or a behavioural specialist completed the questionnaire, as they had the most detailed knowledge of the clients. For the outpatient teams, direct support staff working closely with the clients were tasked with completing the questionnaires, as they interacted directly with the clients and observed their living situations. In both cases, one staff member could be tasked with filling out the questionnaire for several clients.</p> <p>Support staff were instructed to complete the questionnaire based on both their observations and existing information. Support staff generally visit the homes/rooms of their clients regularly, enabling them to reliably assess clients' residential hygiene issues. To minimise socially desirable responses, we emphasised that the data would not be used to evaluate the support staff or analysed at the team level. Background characteristics (Table 1) were extracted from clients' records by the support staff. Most clients receiving specialist mild intellectual disability‐care have undergone an IQ test at some point to determine their IQ score. In some cases, the record did not contain an exact IQ score but indicated a range or a general reference to the presence of a mild intellectual disability. These cases were categorised as 'Exact IQ unknown (but between 50 and 85)'. Mental health problems recorded in the questionnaire were not necessarily formally diagnosed but included strong suspicions, as many clients had never received a formal diagnosis. The completed questionnaires were collected and the data were entered into a database. A verification process was conducted to ensure data completeness and to exclude any questionnaires from clients who had opted out. Finally, all anonymised data were compiled into Excel files and sent to the researchers at LUAS for analysis.</p> <hd id="AN0187526533-6">Measures</hd> <p></p> <hd id="AN0187526533-7">Hoarding Behaviour</hd> <p>To assess hoarding behaviour, a Dutch translation of the expanded version of the Hoarding Rating Scale‐Interview (HRS‐I) (Tolin et al. [<reflink idref="bib44" id="ref45">44</reflink>]), as published by Van Beers and Hoogduin ([<reflink idref="bib48" id="ref46">48</reflink>]) was utilised. The HRS‐I is a semi‐structured 5‐item interview designed to measure the core aspects of hoarding disorders. Originally developed as an interview with the resident, for this study, questions were answered by support staff rather than the residents themselves. The question formulations were adjusted to consistently enquire about the residents' behaviour and experiences (e.g., 'How difficult is it for you...' became 'How difficult is it for your client...'). Permission for this modification was requested from the first author of the HRS, who raised no objections. The original study reported a Cronbach's α of 0.87 (Tolin et al. [<reflink idref="bib44" id="ref47">44</reflink>]). In this study, Cronbach's α was 0.93. While different studies apply various cutoff scores, we adopted the threshold recommended by the original authors: HRS‐I ≥ 14 (Tolin, Frost, et al. [<reflink idref="bib42" id="ref48">42</reflink>]).</p> <hd id="AN0187526533-8">Domestic Squalor</hd> <p>To measure domestic squalor, a Dutch translation of the Environmental Cleanliness and Clutter Scale (ECCS) (Halliday and Snowdon [<reflink idref="bib18" id="ref49">18</reflink>]) as published by Van Beers and Hoogduin ([<reflink idref="bib48" id="ref50">48</reflink>]) was employed. The ECCS consisted a 10‐item scale examining the state of domestic squalor, with each item scored on a scale of 0 to 3. An intervention was deemed appropriate for a sum score of 13 points or more, which indicated moderate or severe domestic squalor. Consistent with the original study, we observed a Cronbach's α of 0.94. From the supplementary questions published by Halliday and Snowdon ([<reflink idref="bib18" id="ref51">18</reflink>]), two were also included in this study: a question about the assessor's perception of the level of squalor ('Is this person living in squalor?') and the question about the support staff's' perception of home safety ('To what extent do the living conditions make the dwelling unsafe or unhealthy for visitors or occupants?'). These questions are scored on a scale of 0 to 3 but are not part of the ECCS scale and are reported separately.</p> <hd id="AN0187526533-9">Clutter</hd> <p>In addition to hoarding behaviour and domestic squalor, the degree of clutter in the living areas was measured using the Clutter Image Rating scale (CIR). The CIR comprises three sets of nine pictures each, enabling assessment of the severity of 'clutter' in the resident's living room, bedroom, and kitchen on a scale from 1 to 9 (Frost et al. [<reflink idref="bib13" id="ref52">13</reflink>]). A score of 4 or higher was considered indicative of significant clutter, warranting clinical attention. This clutter may result from both hoarding behaviour and domestic squalor. In the original study of Frost et al. ([<reflink idref="bib13" id="ref53">13</reflink>]), the CIR composite score had a Cronbach's α of 0.84; in our study, we found a Cronbach's α of 0.93.</p> <hd id="AN0187526533-10">Insight</hd> <p>To evaluate the client's insight into their hoarding problem, a question based on a supplemental item of the Yale‐Brown Obsessive‐Compulsive Scale (Y‐BOCS) (Goodman et al. [<reflink idref="bib15" id="ref54">15</reflink>]), as published by Tolin, Fitch, et al. ([<reflink idref="bib41" id="ref55">41</reflink>], tab. 1: modified description), and translated in Dutch by Van Beers and Hoogduin ([<reflink idref="bib48" id="ref56">48</reflink>]), was used. Tolin, Fitch, et al. ([<reflink idref="bib41" id="ref57">41</reflink>]) found that this question, when put to family informants, correlated significantly and positively with a number of discrepancies measured between the individual and the family informant, which they state is considered a way to operationalise a lack of insight. A similar question was constructed to measure the degree of insight into the issue of squalor (see Supporting Information S1).</p> <hd id="AN0187526533-11">Data Analysis</hd> <p>When determining whether participants met the cutoff score for problematic hoarding behaviour or moderate‐to‐severe domestic squalor, we initially identified six participants with one or more missing values on the HRS‐I and 30 with one or more missing values on the ECCS. This would have resulted in missing values for the calculated items 'hoarding/non‐hoarding' or 'squalor/non‐squalor'. Further examination showed that for three participants with missing HRS‐I data and 24 with missing ECCS data, imputing either the minimum or maximum possible score for the missing value(s) would not alter whether they met the relevant cutoff. Therefore, these cases were included in the final categorisation rather than treated as missing. This slightly increased the prevalence rates from 13.5% (<emph>n</emph> = 58) to 13.8% (<emph>n</emph> = 60) for hoarding behaviour and from 8.1% (<emph>n</emph> = 33) to 8.4% (<emph>n</emph> = 36) for domestic squalor. It was determined that including these cases was deemed the most appropriate use of the available data.</p> <p>To assess the correlation between hoarding behaviour and/or domestic squalor and staff assessment of the seriousness of the problem, Pearson's coefficient with a significance threshold of <emph>p</emph> < 0.05 was used. ANOVA with Bonferroni post hoc analysis was employed to assess differences in item scores among groups exhibiting hoarding behaviour and/or domestic squalor. Finally, demographic variations in hoarding and/or domestic squalor were investigated using a chi‐square test for binary and nominal variables and an ANOVA for the ordinal variable 'age'. Data analysis was performed using IBM SPSS Software version 29.</p> <hd id="AN0187526533-12">Ethical Consideration</hd> <p>The research design was approved by the privacy officers of Middin and the central ethics committee of LUAS on 13 December 2022 (file number: CEO 12/2022). The residents were informed about the study in writing using clear and accessible language (Dutch B1 level). The consent procedure was thoroughly discussed with both the care organisation and the ethics committee, taking multiple factors into account. Individuals with mild intellectual disabilities are generally considered to have both the responsibility and the capacity to make decisions for themselves. For example, residents agree to and sign their own support plans. Communication and approaches were tailored to the residents' level of understanding, with the care teams determining the best way to present the study information and opt‐out procedures based on the specific needs of their client population. For example, in some cases, clients received a letter with the option to request further explanation, whereas in others, information was personally provided by their support coordinator. Active informed consent was not obtained because it was considered disproportionately burdensome for this population. An opt‐out (tacit consent) approach was deemed justifiable based on the rationale that it would be less demanding and cause less stress. The study itself posed a minimal burden for the participants, as the questionnaires were completed by the support staff in a regular care setting without requiring an extra visit to the participant. The opt‐out process was straightforward and flexible as residents could communicate their decisions directly to their support coordinator or send an e‐mail to the researcher. The data were collected and stored by the care organisation. Staff from Middin provided an anonymised dataset for analysis, ensuring non‐attribution to individual personal data.</p> <hd id="AN0187526533-13">Results</hd> <p></p> <hd id="AN0187526533-14">Prevalence of Hoarding Behaviour, Domestic Squalor and Clutter</hd> <p>In our sample, 13.8% (<emph>n</emph> = 60) of the residents met the criteria for problematic hoarding behaviour and 8.4% (<emph>n</emph> = 36) lived in domestic squalor (Table 2). The average total score on the HRS‐I was 5.2 (SD = 7.7) and the average total score on the ECCS was 4.2 (SD = 5.2). Finally, the average score on the CIR was 0.4 (SD = 2.0). In 9% of homes (<emph>n</emph> = 39), the CIR indicated a level of clutter requiring intervention.</p> <p>2 TABLE Prevalence of problematic hoarding behaviour, domestic squalor and clutter in the households of people with mild intellectual disabilities in care settings.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center"><italic>n</italic></th><th align="center">%</th></tr></thead><tbody valign="top"><tr><td align="left">Problematic hoarding behaviour (HRS ≥ 14; N = 434)</td><td align="center">60</td><td align="center">13.8</td></tr><tr><td align="left">Moderate/severe domestic squalor (ECCS ≥ 13; N = 431)</td><td align="center">36</td><td align="center">8.4</td></tr><tr><td align="left">Clutter, reason to intervene (CIR ≥ 4; N = 433)</td><td align="center">39</td><td align="center">9.0</td></tr></tbody></table> </ephtml> </p> <p>3 Abbreviations: CIR, Clutter Image Rating Scale; ECCS, Environmental Cleanliness and Clutter Scale; HRS‐I, Hoarding Rating Scale‐Interview.</p> <p>In total, 16.8% (<emph>n</emph> = 72) of the residents exhibited problematic hoarding behaviour and/or domestic squalor. There was considerable overlap between the two problems: 23 residents showed both, representing 5.3% of the total sample and 31.9% of those with either problem. Figure 1 includes an additional five homes where clutter (CIR ≥ 4) was present without evidence of problematic hoarding behaviour or domestic squalor.</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01jul25/jar70089-fig-0001.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar70089-fig-0001.jpg" title="1 Number of clients with problematic hoarding behaviour, domestic squalor, excessive clutter or no related problems (N = 426)." /> </p> <p></p> <hd id="AN0187526533-16">Prevalence of Hoarding Behaviour, Domestic Squalor and Clutter in Subgroups</hd> <p>Table 3 shows the percentage of clients with hoarding behaviour only, domestic squalor only, and a combination of hoarding and squalor for the total sample and across subgroups. Information on sex, IQ score, age, and care/living situation was gathered. The international definition of mild intellectual disability is limited to an IQ of 75. We used IQ > 75 to distinguish participants who might have been given an indication of borderline intellectual functioning in countries other than the Netherlands. Information on age was collected from the four categories. With regard to the care situation, they can be distinguished in three types: clients who live in a residential care home with a 24‐h support service; clients who live in their own apartment (often owned or rented by the care organisation) in the vicinity of a care hub that they can access if they feel the need (clustered living); and clients who live in their own apartment (rented or owned by themselves) who receive on average 1 h of outreach care per week (ranging from 0.5 to 3 h, depending on the level of care specified in the independent care needs assessment). In this study, no differences in the prevalence of problematic hoarding behaviour and/or domestic squalor were found between these subgroups.</p> <p>3 TABLE Prevalence of problematic hoarding behaviour and/or domestic squalor in subgroups based on gender, IQ score, age and care/living situation (%).</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center">Hoarding</th><th align="center">Squalor</th><th align="center">Combi</th><th align="center">None</th><th align="center" /></tr><tr><th align="center"><italic>n</italic></th><th align="center">%</th><th align="center"><italic>n</italic></th><th align="center">%</th><th align="center"><italic>n</italic></th><th align="center">%</th><th align="center"><italic>n</italic></th><th align="center">%</th></tr></thead><tbody valign="top"><tr><td align="left">Total sample (N = 428)</td><td align="center">36</td><td align="center">8.2</td><td align="center">13</td><td align="center">3.0</td><td align="center">23</td><td align="center">5.3</td><td align="center">356</td><td align="center">83.2</td><td align="center" /></tr><tr><td align="left">Gender (N = 428)</td><td align="center">p = 0.801<xref ref-type="fn" rid="tfn5" /></td></tr><tr><td align="left">Female (N = 172)</td><td align="center">15</td><td align="center">8.7</td><td align="center">5</td><td align="center">2.9</td><td align="center">7</td><td align="center">4.1</td><td align="center">145</td><td align="center">84.3</td><td align="center" /></tr><tr><td align="left">Male (N = 256)</td><td align="center">21</td><td align="center">8.2</td><td align="center">8</td><td align="center">3.1</td><td align="center">16</td><td align="center">6.2</td><td align="center">211</td><td align="center">82.4</td><td align="center" /></tr><tr><td align="left">IQ score (N = 411)</td><td align="center">p = 0.315<xref ref-type="fn" rid="tfn5" /></td></tr><tr><td align="left">50–75 (N = 324)</td><td align="center">27</td><td align="center">8.3</td><td align="center">9</td><td align="center">2.8</td><td align="center">14</td><td align="center">4.3</td><td align="center">274</td><td align="center">84.6</td><td align="center" /></tr><tr><td align="left">76–85 (N = 87)</td><td align="center">8</td><td align="center">9.2</td><td align="center">3</td><td align="center">3.4</td><td align="center">8</td><td align="center">9.2</td><td align="center">68</td><td align="center">78.2</td><td align="center" /></tr><tr><td align="left">Age (N = 426)</td><td align="center">p = 0.367<xref ref-type="fn" rid="tfn6" /></td></tr><tr><td align="left">18–25 years (N = 59)</td><td align="center">0</td><td align="center">0.0</td><td align="center">2</td><td align="center">3.4</td><td align="center">0</td><td align="center">0.0</td><td align="center">57</td><td align="center">96.7</td><td align="center" /></tr><tr><td align="left">26–40 years (N = 161)</td><td align="center">13</td><td align="center">8.1</td><td align="center">5</td><td align="center">3.1</td><td align="center">9</td><td align="center">5.6</td><td align="center">134</td><td align="center">83.2</td><td align="center" /></tr><tr><td align="left">41–60 years (N = 161)</td><td align="center">17</td><td align="center">10.6</td><td align="center">4</td><td align="center">2.5</td><td align="center">10</td><td align="center">6.2</td><td align="center">130</td><td align="center">80.7</td><td align="center" /></tr><tr><td align="left">60+ years (N = 45)</td><td align="center">6</td><td align="center">13.3</td><td align="center">2</td><td align="center">4.4</td><td align="center">4</td><td align="center">8.9</td><td align="center">33</td><td align="center">73.3</td><td align="center" /></tr><tr><td align="left">Care/living situation (N = 424)</td><td align="center">p = 0.651<xref ref-type="fn" rid="tfn5" /></td></tr><tr><td align="left">Living in residential care home (N = 168)</td><td align="center">13</td><td align="center">7.7</td><td align="center">6</td><td align="center">3.6</td><td align="center">7</td><td align="center">4.2</td><td align="center">142</td><td align="center">84.5</td><td align="center" /></tr><tr><td align="left">Clustered living, care nearby (N = 108)</td><td align="center">12</td><td align="center">11.1</td><td align="center">2</td><td align="center">1.9</td><td align="center">4</td><td align="center">3.7</td><td align="center">90</td><td align="center">83.3</td><td align="center" /></tr><tr><td align="left">Own home (bought/rented), outreach care (N = 148)</td><td align="center">11</td><td align="center">7.4</td><td align="center">5</td><td align="center">3.3</td><td align="center">11</td><td align="center">7.4</td><td align="center">121</td><td align="center">81.8</td><td align="center" /></tr></tbody></table> </ephtml> </p> <ulist> <item>4 <emph>Note:</emph> Because of missing values for some of the items, the <emph>N</emph> mentioned for those items was lower than the total of 428 clients for which the presence or absence of both hoarding and squalor could be established.</item> <item>5 a Chi square.</item> <item>6 b ANOVA.</item> </ulist> <hd id="AN0187526533-17">Item Scores of the People With Hoarding Behaviour, Domestic Squalor and Combined Problems</hd> <p>Table 4 shows the number of participants with hoarding behaviour, domestic squalor, or a combination of the two with clinically relevant scores for the items of the scales. This provided insight into the nature of the problem within each group. For only half of those with hoarding behaviour, clutter is a serious problem, whereas dwelling accessibility is a serious issue for less than one‐third. Among those living in squalor, clutter and accessibility are even less often an issue, apart from clutter in the kitchen, which is more prevalent than for people with hoarding behaviour. Among people living in squalor, issues regarding the hygiene of the dwelling (e.g., waste, floor, furniture, bathroom, kitchen, bedroom, odour, and, vermin) are more prevalent than among people with hoarding behaviour. Nevertheless, in several dwellings of people with hoarding behaviour, certain aspects of hygiene deserve attention. Almost all problems were most prominent among those with a combination of hoarding and squalor.</p> <p>4 TABLE Number and percentage of item scores above clinically relevant level in clients with hoarding behaviour, domestic squalor or a combination of both (Chi‐square).</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center">Hoarding (<italic>N</italic> = 36)</th><th align="center">Squalor (<italic>N</italic> = 13)</th><th align="center">Combination (<italic>N</italic> = 23)</th><th align="center"><italic>p</italic></th></tr><tr><th align="center"><italic>N</italic></th><th align="center">%</th><th align="center"><italic>N</italic></th><th align="center">%</th><th align="center"><italic>N</italic></th><th align="center">%</th></tr></thead><tbody valign="top"><tr><td align="left">HRS: clutter ≥ 4</td><td align="center">17</td><td align="center">48.6%</td><td align="center">3</td><td align="center">23.1%</td><td align="center">19</td><td align="center">82.6%</td><td align="center">0.001</td></tr><tr><td align="left">HRS: difficulty discarding ≥ 4</td><td align="center">32</td><td align="center">91.4%</td><td align="center">1</td><td align="center">7.7%</td><td align="center">19</td><td align="center">86.4%</td><td align="center">< 0.001</td></tr><tr><td align="left">HRS: acquisition ≥ 4</td><td align="center">28</td><td align="center">80.0%</td><td align="center">3</td><td align="center">23.1%</td><td align="center">19</td><td align="center">82.6%</td><td align="center">< 0.001</td></tr><tr><td align="left">HRS: emotional distress ≥ 4</td><td align="center">28</td><td align="center">80.0%</td><td align="center">0</td><td align="center">0.0%</td><td align="center">12</td><td align="center">52.2%</td><td align="center">< 0.001</td></tr><tr><td align="left">HRS: impairment in daily life ≥ 4</td><td align="center">14</td><td align="center">40.0%</td><td align="center">2</td><td align="center">15.4%</td><td align="center">17</td><td align="center">73.9%</td><td align="center">0.002</td></tr><tr><td align="left">ECCS: accessibility ≥ 2</td><td align="center">10</td><td align="center">28.6%</td><td align="center">0</td><td align="center">0.0%</td><td align="center">10</td><td align="center">43.5%</td><td align="center">0.021</td></tr><tr><td align="left">ECCS: accumulation of items of little value ≥ 2</td><td align="center">18</td><td align="center">51.4%</td><td align="center">4</td><td align="center">30.8%</td><td align="center">19</td><td align="center">82.6%</td><td align="center">0.006</td></tr><tr><td align="left">ECCS: accumulation of waste ≥ 2</td><td align="center">5</td><td align="center">14.3%</td><td align="center">9</td><td align="center">69.2%</td><td align="center">18</td><td align="center">78.3%</td><td align="center">< 0.001</td></tr><tr><td align="left">ECCS: floors and carpets ≥ 2</td><td align="center">3</td><td align="center">8.6%</td><td align="center">11</td><td align="center">84.6%</td><td align="center">20</td><td align="center">87.0%</td><td align="center">< 0.001</td></tr><tr><td align="left">ECCS: walls and furniture ≥ 2</td><td align="center">3</td><td align="center">8.6%</td><td align="center">10</td><td align="center">76.9%</td><td align="center">20</td><td align="center">87.0%</td><td align="center">< 0.001</td></tr><tr><td align="left">ECCS: bathroom and toilet ≥ 2</td><td align="center">4</td><td align="center">11.8%</td><td align="center">8</td><td align="center">61.5%</td><td align="center">19</td><td align="center">86.4%</td><td align="center">< 0.001</td></tr><tr><td align="left">ECCS: kitchen and food ≥ 2</td><td align="center">2</td><td align="center">5.7%</td><td align="center">12</td><td align="center">92.3%</td><td align="center">19</td><td align="center">90.5%</td><td align="center">< 0.001</td></tr><tr><td align="left">ECCS: odour ≥ 2</td><td align="center">0</td><td align="center">0.0%</td><td align="center">6</td><td align="center">46.2%</td><td align="center">17</td><td align="center">73.9%</td><td align="center">< 0.001</td></tr><tr><td align="left">ECCS: vermin ≥ 2</td><td align="center">0</td><td align="center">0.0%</td><td align="center">2</td><td align="center">15.4%</td><td align="center">4</td><td align="center">17.4%</td><td align="center">0.040</td></tr><tr><td align="left">ECCS: bedroom(s) ≥ 2</td><td align="center">1</td><td align="center">2.9%</td><td align="center">8</td><td align="center">61.5%</td><td align="center">19</td><td align="center">82.6%</td><td align="center">< 0.001</td></tr><tr><td align="left">CIR: bedroom ≥ 4</td><td align="center">14</td><td align="center">40.0%</td><td align="center">5</td><td align="center">38.5%</td><td align="center">17</td><td align="center">73.9%</td><td align="center">0.025</td></tr><tr><td align="left">CIR: kitchen ≥ 4</td><td align="center">10</td><td align="center">28.6%</td><td align="center">6</td><td align="center">46.2%</td><td align="center">15</td><td align="center">68.2%</td><td align="center">0.013</td></tr><tr><td align="left">CIR: living room ≥ 4</td><td align="center">20</td><td align="center">57.1%</td><td align="center">4</td><td align="center">30.8%</td><td align="center">19</td><td align="center">86.4%</td><td align="center">0.004</td></tr></tbody></table> </ephtml> </p> <p>Vermin was relatively rare; in only six dwellings was there a moderate number of vermin (score = 2; <emph>n</emph> = 3) or infestation (score = 3; <emph>n</emph> = 3). In those cases, there was mention of flies (<emph>n</emph> = 5), maggots (<emph>n</emph> = 2), mice (<emph>n</emph> = 1), flees (<emph>n</emph> = 1) and rats (<emph>n</emph> = 1). The ECCS also asks raters to specify the types of items with little value gathered in dwellings (see Table S1). Clothing was mentioned most frequently (64% of 73 dwellings with problematic hoarding behaviour, domestic squalor, or a combination of hoarding and squalor), followed by plastic bags filled with items (58%), newspapers, pamphlets (49%), and electrical appliances (45%). Within the category 'other' (26%) (cuddly) toys were mentioned most often (10%).</p> <hd id="AN0187526533-18">Insight in Hoarding Behaviour and Domestic Squalor</hd> <p>Table 5 shows that the support staff estimate that more than half of the residents with hoarding behaviour and domestic squalor have a poor insight into their situation. Only 10.9% of those with hoarding behaviour and 25.0% of those with domestic squalor were reported to have a good insight into their problems.</p> <p>5 TABLE Participants' insight into hoarding behaviour/domestic squalor, according to support staff.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left" /><th align="center">When hoarding, awareness of hoarding (<italic>N</italic> = 55)</th><th align="center">When squalor, awareness of squalor (<italic>N</italic> = 36)</th></tr><tr><th align="center"><italic>n</italic></th><th align="center">%</th><th align="center"><italic>n</italic></th><th align="center">%</th></tr></thead><tbody valign="top"><tr><td align="left">Excellent insight</td><td align="center">1</td><td align="center">1.8</td><td align="center">1</td><td align="center">2.8</td></tr><tr><td align="left">Good insight</td><td align="center">5</td><td align="center">9.1</td><td align="center">8</td><td align="center">22.2</td></tr><tr><td align="left">Moderate insight</td><td align="center">18</td><td align="center">32.7</td><td align="center">8</td><td align="center">22.2</td></tr><tr><td align="left">Poor insight</td><td align="center">24</td><td align="center">43.6</td><td align="center">11</td><td align="center">30.6</td></tr><tr><td align="left">Lack of insight</td><td align="center">7</td><td align="center">12.7</td><td align="center">8</td><td align="center">22.2</td></tr></tbody></table> </ephtml> </p> <hd id="AN0187526533-19">Severity of the Situation According to Support Staff</hd> <p>Staff were asked to give their views on the overall level of squalor and the safety risks/health hazards posed by the state of the dwelling to residents or visitors (Table 6). For 60 residents (13.8%), the support staff believed that they lived in moderate or severe domestic squalor. The staff view correlated significantly with the total ECCS score (<emph>r</emph> = 0.883, <emph>p</emph> < 0.001). In 23 cases, staff felt there was moderate squalor, even though the ECCS did not indicate domestic squalor; in only two cases, staff felt there was no or only slight squalor, even though the ECCS indicated a situation of moderate or severe squalor.</p> <p>6 TABLE Support staff on seriousness of domestic squalor, safety in clients' homes and threat of eviction.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Domestic squalor according to support staff</th></tr><tr><th align="left" /><th align="center">Hoarding (<italic>N</italic> = 35)</th><th align="center">Squalor (<italic>N</italic> = 13)</th><th align="center">Combination (<italic>N</italic> = 23)</th><th align="center">None (<italic>N</italic> = 358)</th></tr></thead><tbody valign="top"><tr><td align="left">No/mild</td><td align="center">28</td><td align="center">80.0%</td><td align="center">2</td><td align="center">15.4%</td><td align="center">0</td><td align="center">0.0%</td><td align="center">342</td><td align="center">95.5%</td></tr><tr><td align="left">Moderate/severe</td><td align="center">7</td><td align="center">20.0%</td><td align="center">11</td><td align="center">84.6%</td><td align="center">23</td><td align="center">100.0%</td><td align="center">16</td><td align="center">4.5%</td></tr></tbody></table> </ephtml> </p> <p></p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Unsafe or unhealthy living circumstances according to support staff</th></tr><tr><th align="left" /><th align="center">Hoarding (<italic>N</italic> = 35)</th><th align="center">Squalor (<italic>N</italic> = 13)</th><th align="center">Combination (<italic>N</italic> = 23)</th><th align="center">None (<italic>N</italic> = 360)</th></tr></thead><tbody valign="top"><tr><td align="left">No/possible risk</td><td align="center">28</td><td align="center">80.0%</td><td align="center">7</td><td align="center">53.8%</td><td align="center">4</td><td align="center">17.4%</td><td align="center">358</td><td align="center">99.4%</td></tr><tr><td align="left">Considerable/severe risk</td><td align="center">7</td><td align="center">20.0%</td><td align="center">6</td><td align="center">46.2%</td><td align="center">19</td><td align="center">82.6%</td><td align="center">2</td><td align="center">0.6%</td></tr></tbody></table> </ephtml> </p> <p></p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Current or past (threat of) eviction because of hoarding or squalor</th></tr><tr><th align="left" /><th align="center">Hoarding (<italic>N</italic> = 35)</th><th align="center">Squalor (<italic>N</italic> = 12)</th><th align="center">Combination (<italic>N</italic> = 22)</th><th align="center">None (<italic>N</italic> = 358)</th></tr></thead><tbody valign="top"><tr><td align="left">Never</td><td align="center">28</td><td align="center">80.0%</td><td align="center">10</td><td align="center">83.3%</td><td align="center">10</td><td align="center">45.5%</td><td align="center">352</td><td align="center">98.3%</td></tr><tr><td align="left">(Threat of) eviction</td><td align="center">7</td><td align="center">20.0%</td><td align="center">2</td><td align="center">16.7%</td><td align="center">12</td><td align="center">55.5%</td><td align="center">6</td><td align="center">1.7%</td></tr></tbody></table> </ephtml> </p> <p>For 36 residents (8.3%), the support staff reported a considerable or severe safety risk or health hazard to residents or visitors due to hoarding behaviour or domestic squalor. Considerable or severe risk was most likely present in dwellings with both hoarding and squalor (Table 6). The degree to which support staff perceived the home to be unsafe correlated significantly with both hoarding behaviour (<emph>r</emph> = 0.708, <emph>p</emph> < 0.001) and domestic squalor (<emph>r</emph> = 0.776, <emph>p</emph> < 0.001). In 44.8% of the homes of residents with problematic hoarding behaviour and 66.7% of the homes of residents with domestic squalor, the support staff reported considerable or severe risk (i.e., a score of 2 or higher: there is a risk of fire, injury, or health problems).</p> <p>The answers to the question on eviction showed that 6.7% of all clients were threatened with eviction at some point because of hoarding or squalor. Table 6 shows that (the threat of) eviction is substantially more common among clients with a combination of problematic hoarding behaviour and domestic squalor. Of all clients with hoarding and/or squalor, 31% had (had) to deal with (the threat of) eviction; for clients with a combination of problematic hoarding behaviour and domestic squalor, this is as high as 55%. A current threat or planned eviction was reported only in the latter category and only among clients with outpatient care.</p> <hd id="AN0187526533-20">Discussion</hd> <p>To the best of our knowledge, this is the first study on the prevalence and nature of hoarding behaviour and domestic squalor among individuals with mild intellectual disabilities. The prevalence rates of hoarding behaviour (13.8%) and domestic squalor (8.4%) were notably higher than those reported in previous studies involving the general population. For comparison, Postlethwaite et al. ([<reflink idref="bib31" id="ref58">31</reflink>]) reported a hoarding disorder prevalence of only 2.5% in the Western world, while Norton et al. ([<reflink idref="bib29" id="ref59">29</reflink>]) found a prevalence of 0.85% for domestic squalor in households in the United Kingdom. In line with the literature, we found a substantial overlap between the two problems, with the combination of hoarding and squalor being associated with a higher risk. The higher prevalence rates found here may partly be due to the use of proxy informants (support staff) instead of self‐reports for hoarding, as well as differences in how hoarding and squalor are defined across studies. Some studies, for example, have used higher HRS cut‐off scores (≥ 17), which would naturally reduce the prevalence rates for hoarding (Iervolino et al. [<reflink idref="bib20" id="ref60">20</reflink>]; López‐Solà et al. [<reflink idref="bib26" id="ref61">26</reflink>]; Zilhão et al. [<reflink idref="bib52" id="ref62">52</reflink>]). Two Dutch population‐based studies, Cath et al. ([<reflink idref="bib8" id="ref63">8</reflink>]) and Zilhão et al. ([<reflink idref="bib52" id="ref64">52</reflink>]), found prevalence rates of 2.1% and 6.8%, respectively; however, they used a truncated version of the HRS with only four items. Had we used the same items and cutoff scores, our prevalence estimates would have been closer to theirs (4.8% and 6.7%, respectively). However, David Tolin, the developer of the HRS, recommended lower cutoff scores based on psychometric research. In their original study, Tolin, Frost, and Steketee ([<reflink idref="bib42" id="ref65">42</reflink>]) recommended using an HRS cut‐off score of ≥ 14 to indicate hoarding, which is the threshold we adopted in this study. A later study by Tolin et al. ([<reflink idref="bib44" id="ref66">44</reflink>]) proposed an even lower cut‐off of HRS ≥ 11, which would have raised the prevalence of problematic hoarding behaviour in our study from 13.8% to 18.0%.</p> <p>These findings suggest that individuals with mild intellectual disability in a care setting may be particularly vulnerable to hoarding behaviour and domestic squalor. This is particularly striking, given that these individuals are already receiving support, implying that many issues related to clutter and cleanliness may have already been mitigated by staff intervention. Without this support, the prevalence rate may have been higher. However, individuals with hoarding behaviour and domestic squalor often lack insight into their problems. For example, Tolin, Fitch, et al. ([<reflink idref="bib41" id="ref67">41</reflink>]) found that 55% of individuals with problematic hoarding lacked insight into their behaviour, a finding mirrored in this study, where staff reported poor or no insight in 56.3% of clients with hoarding behaviour and 52.8% with domestic squalor. Due to this lack of insight among clients, support staff must balance the provision of care while respecting client autonomy (Braye et al. [<reflink idref="bib7" id="ref68">7</reflink>]). Additionally, support staff may lack specialised knowledge or skills to effectively address hoarding behaviour and domestic squalor (Kaal and Gast [<reflink idref="bib22" id="ref69">22</reflink>]), limiting their ability to prevent these issues.</p> <p>Interestingly, no significant differences in hoarding behaviour or domestic squalor prevalence were found between the subgroups based on care or living situations. This does not necessarily mean that clients in different settings experience the same level of difficulty in hoarding or squalor. For example, clients in assisted living facilities may struggle more with tidying but may also receive more support to address these challenges. A more focused study design that examines care methodologies, staff education, and attitudes is necessary to fully understand the impact of different care environments on these behaviours.</p> <p>The consequences of problematic hoarding behaviour and domestic squalor can be substantial. Among clients with problematic hoarding behaviour and/or domestic squalor, the support staff judged that 45.1% were living in conditions that posed a health or safety risk to themselves or others. This figure corresponds to 8.3% of the total population with mild intellectual disability in care organisations. Risks were more strongly associated with domestic squalor than with hoarding behaviour. At some point, 6.7% of all clients faced the threat of eviction because of clutter or squalor. Those with a combination of hoarding and squalor were particularly vulnerable, with 54.5% at some point at risk of losing their homes.</p> <hd id="AN0187526533-21">Strength and Limitations</hd> <p>This study provides valuable insights into the prevalence of hoarding behaviour and domestic squalor among individuals with mild intellectual disabilities. The key strengths include high response rate (85%), the application of widely adopted instruments, and the involvement of support staff familiar with the daily lives of the participants. The latter likely reduced the risk of underreporting because of limited self‐awareness among participants regarding the problems studied. However, several limitations must also be acknowledged. First, the instruments used were based on existing translations. However, these translations were not formally validated, which may have affected the accuracy of our findings. Future research should consider validating translated versions of these scales to ensure that they measure constructs consistent with the originals. Second, the study included a single question regarding staff's perceptions of home safety. Although this was obtained from the supplementary questions for the ECCS, it may oversimplify the complex issue. The question on home safety was presented after the hoarding and squalor questions. This sequencing may have introduced order effects, where prior questions could have influenced the responses to subsequent questions. Second, the study did not collect demographic information of the staff who completed the surveys or register the number of staff members who participated. Often, one staff member filled out surveys for multiple clients, which could have introduced cluster effects. Understanding the background and number of staff members involved adds transparency and robustness to the analysis. Third, the support staff who completed the scales were not provided specific training or guidelines on how to administer the tools. This is important because the ECCS is generally validated by experienced assessors (Halliday and Snowdon [<reflink idref="bib18" id="ref70">18</reflink>]). Although Snowdon et al. ([<reflink idref="bib38" id="ref71">38</reflink>]) suggested that untrained raters using the ECCS can perceive differences between the degrees of uncleanliness and accumulation over time, the absence of training may have introduced variability in the data. The lack of training is likely less critical for the HRS and CIR, as they are also used as self‐report tools (DiMauro et al. [<reflink idref="bib10" id="ref72">10</reflink>]; Greig et al. [<reflink idref="bib17" id="ref73">17</reflink>]). Fourth, no inter‐rater reliability assessment was conducted, meaning that it is unclear whether different staff members rated hoarding behaviour and domestic squalor consistently. Finally, the study focused on individuals with a mild intellectual disability from a single care organisation in the Netherlands. The decision to focus on mild intellectual disability was informed by the specific needs and enquiries arising within the field of mild intellectual disability‐care. Nevertheless, future research could explore whether hoarding and squalor issues extend to people with more severe intellectual disabilities, as this could provide a more complete understanding of these issues. While the data may reflect the mild intellectual disability‐population within this organisation, broad conclusions about the prevalence of hoarding behaviour and domestic squalor among people with mild intellectual disability across different settings or countries cannot be drawn. Future research should replicate this study across multiple organisations and regions to provide more generalisable findings.</p> <hd id="AN0187526533-22">Conclusion</hd> <p>To the best of our knowledge, this study is the first to investigate the prevalence of hoarding behaviour and domestic squalor in people with mild intellectual disabilities. Although the findings should be interpreted with caution, hoarding behaviour and domestic squalor appear to be significant problems, with prevalence rates of 13.8% and 8.4% found, respectively. These relatively high prevalence rates were observed in individuals who were already supported in their adaptive skills. A minority of clients with hoarding behaviour and domestic squalor demonstrated insights into their situation. In particular, clients who showed a combination of hoarding behaviour and domestic squalor live in unsafe or unhealthy environments and are at a significant risk of being evicted. This study shows that hoarding behaviour and domestic squalor are significant problems that have not yet received the attention they deserve. Professionals working with individuals with intellectual disabilities should be aware of their elevated risk of hoarding and squalor. Further research on the prevalence and nature of hoarding and squalor could involve larger and more diverse samples, potentially across different settings, while addressing the methodological issues highlighted in this study. Future studies on the broader issue should explore the effectiveness of targeted interventions for this population and the role of support staff training in mitigating hoarding and squalor. Policymakers and care organisations should consider investing in additional resources and training staff to better address these issues.</p> <hd id="AN0187526533-23">Acknowledgements</hd> <p>We would like to express our gratitude to Tim Holierhoek en Ruby van der Vegt for their contributions to data gathering and entry, which were crucial for the completion of this research. We would also like to thank the numerous support staff who filled in all those questionnaires. Their commitment to the project is deeply appreciated.</p> <hd id="AN0187526533-24">Ethics Statement</hd> <p>The research design was approved by the privacy officers of the care organisation and the central ethics committee of LUAS on December 13, 2022, file number CEO 12/2022. All residents were informed about the study and given the opportunity to indicate if they did not wish information about their living situation to be shared or published (opt‐out).</p> <hd id="AN0187526533-25">Conflicts of Interest</hd> <p>The authors declare no conflicts of interest.</p> <hd id="AN0187526533-26">Data Availability Statement</hd> <p>The data that support the findings of this study are available from Middin. Restrictions apply to the availability of these data, which were used under license for this study. Data are available from the author(s) with the permission of Middin.</p> <p>GRAPH: Data S1. 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Header DbId: eric
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An: EJ1481324
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PubTypeId: academicJournal
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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Prevalence and Characteristics of Hoarding Behaviour and Domestic Squalor among Adults with Mild Intellectual Disability Receiving Residential or Outpatient Care
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Hendrien+Kaal%22">Hendrien Kaal</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0004-4585-0540">0009-0004-4585-0540</externalLink>)<br /><searchLink fieldCode="AR" term="%22David+Gast%22">David Gast</searchLink><br /><searchLink fieldCode="AR" term="%22Jacob+Scholte+ter+Horst%22">Jacob Scholte ter Horst</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2025 38(4).
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Behavior+Disorders%22">Behavior Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Incidence%22">Incidence</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Mild+Intellectual+Disability%22">Mild Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Residential+Care%22">Residential Care</searchLink><br /><searchLink fieldCode="DE" term="%22Patients%22">Patients</searchLink><br /><searchLink fieldCode="DE" term="%22Health%22">Health</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Netherlands%22">Netherlands</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.70089
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: To date, no studies have examined the prevalence of hoarding behaviour and domestic squalor among individuals with mild intellectual disability. To address this gap, we conducted a prevalence study within a population supported by a medium-sized care organisation in the Netherlands. Method: Data were collected on 437 individuals with mild intellectual disability receiving care in residential facilities or through outpatient services. Assessments were conducted using the Hoarding Rating Scale-Interview, the Environmental Cleanliness and Clutter Scale, and the Clutter Image Rating Scale. Results: Hoarding behaviour and/or domestic squalor were observed in 16.8% of the residents. Support staff identified 8.3% of dwellings as posing significant safety risks or health hazards. Additionally, 6.7% of residents had been threatened with eviction due to hoarding or squalor. Conclusions: Hoarding behaviour and domestic squalor appear to be more prevalent among individuals with mild intellectual disability in care settings than among the overall population.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1481324
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1481324
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.70089
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
    Subjects:
      – SubjectFull: Behavior Disorders
        Type: general
      – SubjectFull: Incidence
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Mild Intellectual Disability
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Residential Care
        Type: general
      – SubjectFull: Patients
        Type: general
      – SubjectFull: Health
        Type: general
      – SubjectFull: Netherlands
        Type: general
    Titles:
      – TitleFull: Prevalence and Characteristics of Hoarding Behaviour and Domestic Squalor among Adults with Mild Intellectual Disability Receiving Residential or Outpatient Care
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Hendrien Kaal
      – PersonEntity:
          Name:
            NameFull: David Gast
      – PersonEntity:
          Name:
            NameFull: Jacob Scholte ter Horst
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 07
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 1360-2322
            – Type: issn-electronic
              Value: 1468-3148
          Numbering:
            – Type: volume
              Value: 38
            – Type: issue
              Value: 4
          Titles:
            – TitleFull: Journal of Applied Research in Intellectual Disabilities
              Type: main
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