Adult safeguarding managers' understandings of self‐neglect and hoarding

Abstract Self‐neglect and hoarding are behaviours that are hard to define, measure and address. They are more prevalent among older people because of bio‐psycho‐social factors, which may be exacerbated by advancing age. This paper aims to further understandings of self‐neglect and hoarding in England's Care Act 2014 context, drawing on a study involving qualitative interviews with local authority adult safeguarding managers who play an important role in determining interventions with individuals who self‐neglect and/or hoard. Online interviews were conducted with adult safeguarding leads and managers from 31 English local authorities in 2021. Interview data were subject to thematic analysis. This paper explores the commonalities and differences in adult safeguarding managers' understandings of the causes and consequences of self‐neglect and/or hoarding among older people, which are likely to have tangible impacts on service provision in their local authority, and influencing of wider changes to policies and procedures. Most participants understood these phenomena as caused by a range of bio‐psycho‐social factors, including chronic physical conditions, bereavement, isolation. A minority took a more clinical or psycho‐medical perspective, focusing on mental ill‐health, or referred to the social construction of norms of cleanliness and tidiness. Whatever their understanding, by the time such behaviours are brought to the attention of safeguarding professionals a crisis response may be all that is offered. The implications of the findings are that other agencies should be encouraged to provide more early help to older people at risk of self‐neglect and/or of developing harmful hoarding behaviours, and that sustained engagement with those affected may help to understand some of the causes of these behaviours to enable effective support or practice interventions.


| INTRODUC TI ON
Self-neglect and hoarding are difficult to define, measure and address. In England, as in many other countries, a standard definition for self-neglect is yet to be agreed. However, 'hoarding disorder' was revised from being a diagnostic criteria for obsessive-compulsive disorder (OCD) (Mataix-Cols et al., 2010) to a new code, first in the Diagnostic and Statistical Manual of Mental Disorders (DSM) code (DSM-5, American Psychiatric Association, 2013) and endorsed in the 11th revision of the 'International Classification of Diseases' (ICD-11, World Health Organisation, 2021). In the DSM-5 and ICD-11, hoarding disorder is defined as a persistent difficulty in discarding possessions, resulting in cluttered living spaces which compromises their intended and safe use. Self-neglect was written into safeguarding guidance in England under the Care Act 2014, as 'cover[ing] a wide range of behaviour [including] neglecting to care for one's personal hygiene, health, or surroundings and includes behaviour such as hoarding' (Anka et al., 2017), so hoarding is seen as both a separate disorder and as a sub-category of self-neglect. While giving lawful justification to state intervention in the lives of adults needing care and support who are at risk of harm or neglect, the inclusion of self-neglect in the Care Act guidance was deemed 'an afterthought' that gave rise to some practice uncertainties (Carter, 2016).
Lack of definitional clarity, particularly of self-neglect, means that prevalence studies are inconsistent and few cover the general population (Mason & Evans, 2020). In England, local authorities (LAs) and the National Health Service (NHS) have not generally collected separate data on self-neglect and therefore reliable estimates of prevalence are unavailable. One United States' (US) study estimated the prevalence of self-neglect among people aged 65+ stood between 7.5% and 10.1% (Dong et al., 2012). One study, carried out after the introduction of the DSM-5 definition, estimates the prevalence of compulsive hoarding/hoarding disorder in adults of all ages in the United Kingdom to be 1.3% (Nordsletten et al., 2013). Concerning the prevalence of hoarding behaviours in older age, Nordsletten et al. (2013, p. 449) further reported 'that hoarding disorder is more prevalent in older adults', although Bratiotis et al. (2016, p. 408) cautioned that it may not be that hoarding increases with age but disapproval and ability to cope.
As Day (2020, p. 93) observed, the 'absence of a universal definition and subjectivity in assessment has been problematic for research and practice'. Indeed, professionals can find self-neglect and hoarding cases practically, personally and ethically challenging (Braye et al., 2011;Day et al., 2012;Gunstone, 2003).
This present paper aims to further understandings of selfneglect and hoarding in the Care Act 2014 context, drawing from an exploratory analysis of the views and knowledge of LA adult safeguarding managers who play an important role in managing support and interventions with individuals who are experiencing these problems. Their understandings of the causes and consequences of self-neglect and hoarding are likely to have a tangible impact on triaging and service provision in their LA, and influence wider changes to policies and procedures. Interviews were undertaken in the first phase of an ongoing study (Social care responses to self-neglect and hoarding among older people: What works in practice?), which explores the experiences of older people, their relatives and frontline practitioners in the context of hoarding and/or self-neglect.

| BACKG ROU N D
Providing successful interventions to help people who are selfneglecting and/or hoarding is challenging. Most easily identified by their symptoms and consequences, the conditions often encompass personal inability to care for oneself or one's environment in ways that are socially acceptable. Self-neglect can negatively affect physical and psychological well-being, mortality, health and social care utilisation (Dong, 2017). Hoarding behaviour can lead to accumulations of treasured possessions that may become unmanageable, unhygienic or unsafe (Bodryzlova et al., 2019). Under the Care Act 2014 self-neglect and hoarding were formally recognised within a safeguarding remit in England, therefore requiring responses from LAs and their partners. If an adult appears to have care and support needs and there are concerns about self-neglect and/or hoarding, regardless of whether they meet the criteria for service provision (Herring, 2016), a Section 42 safeguarding enquiry may be initiated. The referring agency can bring its concern to the lead agency (the LA), through which multi-agency working is organised, so that fuller assessments and safeguarding planning can take place. In practice, local teams/authorities work differently; clearly defined safeguarding 'pathways', which are time or resource constrained (Ash, 2013), do not necessarily well serve people who self-neglect and/or hoard, and it can be whomever has won the person's trust who acts as a bridge to other interventions (Emmer De Albuquerque Green et al., 2021).

What is known about this subject?
• Definitions of both self-neglect and hoarding vary and so prevalence estimates vary.
• Causes of self-neglect and hoarding among older people may be multiple and entrenched.
• Supporting people who self-neglect or show hoarding behaviours may be professionally and personally challenging.

What this paper adds
• Adult safeguarding professionals perceive the causes and consequences of hoarding and self-neglect as closely related.
• Older people who are at risk from self-neglect or their hoarding behaviours often come to service attention at crisis point.
• Earlier help and identification of emerging problems from self-neglect and/or hoarding may help with effective responses.
The extent to which people may be choosing to adopt a particular lifestyle (Lauder, 2001, p. 547) presents difficult legal, ethical and practical dilemmas for practitioners. Assessments which attempt to differentiate between 'an inability and unwillingness to care for oneself, and perceived capacity to understand the consequences of one's actions, become therefore crucial determinants of professional responses' (ibid.).
According to Braye et al. (2014), the evidence for effective selfneglect practice points to a combination of negotiated services and imposed interventions based on long-term relationship-based work, including assertive outreach and detailed risk and mental capacity assessments, supported by practitioners' legal and ethical literacy. Longterm involvement is often necessary because people who self-neglect and/or hoard are otherwise frequently referred repeatedly to adult safeguarding (Rowan et al., 2020). However, this long-term support can be difficult for managers to justify when, given the deep-rooted or complex nature of self-neglect and/or hoarding behaviours, service outcomes seldom restore the person to a pre-existing or normative state of well-being and this leads to inconsistent practice.

| Theoretical perspectives
Explanatory models of self-neglect (see Martineau et al., 2021) and/ or hoarding (see Steils et al., 2022) focus on different causal factors, interventions and outcomes.
For example, a psycho-medical paradigm sees self-neglect as a psychiatric diagnosis (Lauder et al., 2005b), the product of an underlying mental health problems or pathological personality. The recognition of hoarding as a recognised disorder, often, but not always, associated with other disorders such as obsessive compulsive disorder (OCD) (whereby an individual experiences intrusive thoughts and compulsive behaviours around acquiring possessions and difficulty discarding them) (Wheaton, 2016), also reflects a psycho-medical approach.
A social constructionist view argues that self-neglect should be understood in relation to cultural and historical norms of hygiene and cleanliness (see also Cox, 2011;Lauder, 2001). This paradigm views self-neglect not as an objective phenomenon, but produced by social, cultural and professional judgement set against mainstream values. Similar arguments are made by Shaeffer (2017) in the context of hoarding. Tolerance of eccentricity (Lauder et al., 2005a) and accumulated possessions (McDermott, 2008) also impacts upon how self-neglect and hoarding are positioned in public discourse. Consequently, this approach emphasises the importance of professional judgement and negotiated meanings (Lauder, 2001).
The bio-psycho-social model considers the interrelation of internal and external factors and their association with, if not causation of, self-neglect (see Iris et al., 2010). Cognitive behavioural approaches (Taylor & Jang, 2011) were initially developed by Frost and Hartl (1996) for hoarding, later refined by Frost (2003, 2007). These have found wider acceptance in practice. These models propose that self-neglect and hoarding arise from patterns of thoughts, beliefs and behaviours, which therefore suggests intervening in these beliefs and thoughts (Wheaton, 2016).
Life changing experiences and traumatic life events-such as loss of a loved one, illness or abuse and neglect-were considered as causal in hoarding behaviour in several models and evidence of a correlation has been found in some studies but not all (Dozier & Ayers, 2017;Hombali et al., 2019).
Practical, as well as theoretical, understandings of the causes and consequences of self-neglect and hoarding by adult safeguarding managers are the focus of this paper-and in the next section we outline the research methods employed to uncover them.

| ME THODS
The interview guide was developed in consultation with the study advisory group, including older people with direct experiences of hoarding, and safeguarding and hoarding behaviour experts. Interviews were undertaken in 31 LAs with the respective 31 adult safeguarding leads. In 10 LAs, at the request of the safeguarding leads, 13 additional managers were interviewed in joint interviews. This has resulted in the provision of sometimes different and extended information on the application of policies, but on the whole the content and tone of discussions with more than one participant did not differ much from those with single participants. To ensure the sample was geographically dispersed, we invited three LAs from each of the nine English regions. Before each interview (conducted November-December 2020), participants received information sheets and consent forms Semi-structured interviews were used as a means of gathering perceptions and capturing a body of practice knowledge. The topic guide was closely followed to produce comparable data across the sample. Due to the COVID-19 pandemic, interviews were conducted by two researchers (JW and SM) via video conferencing software and audio recorded with consent. On average, interviews lasted about 75 minutes (ranging from 45 to 120). All audio recordings were transcribed and anonymised.
The two interview questions on which this paper specifically draws are: 1. What are the most common factors that lead to self-neglect and/or hoarding among older people?
2. Based on your experience, what would you say are the most common consequences of self-neglect and/or hoarding among the older population?
A further question covering the impact of Covid-19 was asked and these findings are reported elsewhere .
Thematic analysis, using an analytic induction methodology of the data, was used to distil common topics and understanding. NVivo qualitative data analysis software was used to store, manage and analyse the data. Analysis was carried out collaboratively to review emerging themes as they were identified by the research team that included gerontologists with social care and safeguarding expertise. While attempts were made to code responses related to hoarding and self-neglect separately, most participants did not make such distinctions, and indeed commented on their inter-relationships, as described below.

| FINDING S
This section outlines participants' understanding of the causes of self-neglect and/or hoarding. Where possible we note if the data relate to self-neglect, hoarding or both, but often participants did not provide this clarification, perhaps, as discussed later, indicating their understandings of each. Quotes from participants refer to case examples and it is worth noting that the severity of those they chose to recount are at the higher end of what is typical of most people who self-neglect and/or hoard and may say something about participants' understandings and the emotionality of the work.

| Getting to the problems' roots
Complex and interrelated causes were said to make self-neglect and/

| Chronic conditions and causal factors
Reflecting a psycho-medical approach, mental ill-health and sometimes physical health problems were cited as primary causes of selfneglect and/or hoarding. Conditions such as disability, stroke and diabetes were mentioned by a few participants in relation to reduced mobility, both in terms of bringing items closer to hand and difficulty maintaining cleanliness and hygiene.
In contrast, several mental health conditions were cited by participants, most commonly depression, post-traumatic stress disorder (PTSD) and obsessive compulsive disorder (OCD), as being linked to hoarding and/or self-neglect. One considered that the recent DSM-5/ ICD-11 recognition of hoarding as a mental disorder was helpful in explaining and framing responses to hoarding behaviour. Another participant thought that entrenched psychological factors leading to hoarding and/or self-neglect were harder to address.
A lack of formal diagnosis of mental ill-health over the years was mentioned several times as impacting on older people. This related both to improvements in clinical and popular understandings of mental health over time and the complexity of cases leading to nonor mis-diagnosis. There was also reference to those who had been 'kept in the family' whose needs only emerged when relatives died.
Other participants linked mental ill-health to other factors, including substance abuse or trauma, or suggested these were the underlying cause: We've got lots of cases coming through where, because of their deteriorated mental health, often because of substance misuse and the challenges around their substance misuse, that they start to deteriorate, their ability to self-care, their ability to self-nurture, maintain sufficient nutrition. (LA23)

| Triggering events
In addition to long-standing conditions, triggering events were often mentioned as prompting self-neglect and/or hoarding behaviours.
Connections were most commonly drawn with hoarding but were not restricted to this.
Loss, of anything-partner, job or good health-but particularly bereavement, was identified as a type of traumatic reaction that could lead to the loss of identity or co-dependent relationship, and therefore the beginning or exacerbation of self-neglect and/or hoarding behaviours: It can also be a series of smaller losses that then… it's just one loss too many, and that could be job, it could be health, it could be the loss of a relationship that's not necessarily a bereavement, but it all seems to be linked to loss in our experience.
Other triggering instances from childhood, such as abuse, poverty or wartime rationing, were also mentioned.
The trauma of an event was described as having a profound impact on motivation for some, meaning people would 'give up' and either start self-neglect and/or hoarding behaviours or quickly deteriorate: (Person) had a physical disability, they'd always been quite an active individual and they were given medical advice that said, this is basically it, there is nothing more we can do for you; your health physically is going to decline very, very rapidly and that was the point they sort of gave up, I guess, and that's when the self-neglecting started because they couldn't really see a life beyond that. (LA28)

| Beliefs
The final type of cause for self-neglect and/or hoarding identified centred around people's beliefs, in line with a cognitive behavioural explanation of these behaviours. Such beliefs were said to originate from family norms, a desire to withdraw from society, or preferences for alternative medicines or healing. Such beliefs could become entrenched: I would suggest it's learned behaviour, particularly with regard to the one lady that I mentioned before, she was absolutely adamant that that was all fine because that's how I grew up… she said to me once, I was a baby and crawled around in all this and nothing happened to me, so why would I need to change anything, and she was probably nearing 70 at that point.
[…] Just always lived that way.
Beliefs that professionals would make negative judgements and interfere were thought to lead to people secluding themselves: They isolate themselves to safeguard them psychologically from intervention from the state, or other people who they perceive may wish to take over control, and the things that they can control is getting stuff into their property and this is how they are managing life.
One participant observed that beliefs in the power of alternative medicines or religion led to avoidance of medical assistance, risking selfneglect and/or hoarding: We had a safeguarding referral through for a lady who had always used homeopathic medicine and never accepted health services, […] but she had now developed, with age and she was also a hoarder, there was hygiene issues within the home, so her health had progressed to be quite bad, and our health service colleagues were very worried […]. And another lady who thought that God would intervene and had […] developed extreme religious beliefs that she directly related… if I wait long enough, God is going to make this better. (LA24)

| Exacerbating factors
In addition to causes, participants also identified factors which exacerbated people's problems with self-neglect and/or hoarding. The most prominent were age-related impairment, disability or frailty, making situations increasingly untenable. Also, alcohol and other substance abuse could underlie behaviours, both exacerbating and masking the severity of self-neglect problems: They are people who very often will have a whisky before they go to bed, and the whisky becomes two whiskies, and the next thing they're asleep in the chair, or they've just sat in that chair and finished the whisky or finished the wine, they're developing pressure sores because they've been sat in the same place, or their mobility's deteriorating, so they're drinking to manage that, and then the impact on that is deterioration of skin, so pressure areas and things.
Deliberate self-isolation could increase hoarding severity particularly, which again could increase with age as significant relationships were lost: People don't let people into their environment as much as possible and it leads them to hoard even more because there's nobody asking questions or having a conversation about their belongings that may be causing some problems. (LA14)

| Differences between self-neglect and hoarding causes
Most participants did not differentiate between the causes of self-neglect and hoarding because they believed 'the presentation can be very similar' (LA14). Those who identified differences pointed to the linking of selfneglect and hoarding in definitions as making distinctions difficult: Sometimes perhaps in our discourse they have been linked together where that is not always as helpful. (LA20).
Views of the possibility of having one condition and not the other, when the two were so closely related, also differed between participants. Although most thought that one could self-neglect without hoarding, the contrary situation was only reported by one manager: [Some] people are very able to self-care, so they're not actually neglecting themselves, they're just living in a very hoarded and cluttered environment. (LA10)

| Consequences
From the ways participants spoke about cases of self-neglect and/or hoarding it seemed that causes and consequences were often con- Another aspect of this interlinking was that the symptoms of selfneglect and hoarding often resulted from the person's response to the factors causing the behaviour, which could be exacerbated by the selfneglect and hoarding. For example, LA14 observed that, whatever the reason(s), the consequences of self-neglect and hoarding could start a downward spiral.
A referral to safeguarding services arising from a crisis was also thought to often lead to assessments focusing on consequences of self-neglect and/or hoarding behaviour rather than underlying causes because of the necessity to respond to immediate risks and problems.

| Serious health implications
Several participants mentioned serious health implications of self-neglect and/or hoarding, often linked to common age-related challenges such as poor mobility. The most cited physical health consequences were falls, malnourishment, amputations and ulcers, as the adult safeguarding manager in LA23 recalled: One example is people refusing to take diabetes medication, for example, so they're neglecting their need to have essential medication, and that result in a deterioration in the physical health … they end up getting gangrene and we've had cases where they've ended up having amputations, really awful.

(LA23)
A lack of personal care and refusal of medical treatment could mean pressures ulcers developed. In these rare instances of severe deterioration in health following self-neglect and/or hoarding the consequences could be hospital admission or death.

| Social isolation
Isolation was described both as a cause of self-neglect and hoarding behaviours, but also a consequence of feelings of shame and embarrassment, and acts of stigmatisation and marginalisation by others: They're so embarrassed about the state of the house that they don't let people over the doorstep and create all sorts of pretexts and excuses that often result in families being pushed away from them.
Experiences of isolation and loneliness were also linked to poor overall well-being and increased mental health problems.

| Poor living conditions
Fire risks could be compounded by hoarded material blocking escape routes and access for emergency services.

| Wider community risks
Several participants referred to the wider environmental impact of self-neglect and hoarding. Sometimes these prompted concern and complaints leading to police involvement, legal action and anti-social Linked to this was an acknowledgement that statutory interventions risked further distress and isolation. being typical examples. In discussing the data reported above, three overarching themes seemed prominent.  (Neave et al., 2017). It is known that people with hoarding behaviours are more likely to report a broad range of chronic and severe medical concerns and, as a result, have a fivefold higher rate of mental health service utilisation (Tolin et al., 2008).

| Working with severe consequences
Finally, the severity of some outcomes-including amputations, and

| CON CLUS ION
There are many assertions that coordinated, multi-disciplinary, person-centred interventions are successful in supporting and improving the well-being of older people who self-neglect and/or hoard Steils et al., 2022). However, while specialist treatment can reduce symptoms and risks associated with hoarding, these reductions are generally modest (14-40% symptom reduction) and many participants remain in the clinical range of hoarding disorder after clinical treatment (Thompson et al., 2017). So, in reality, ideas of 'best practice' when supporting people who self-neglect and/or hoard derive more from accumulated practice wisdom than formally evaluated interventions (ibid.). What is missing from this evidence is the importance of thorough understandings of the conditions. This paper analysed the perspectives of adult safeguarding leads and managers about the complex phenomena of self-neglect and hoarding.
Participants often did not differentiate between self-neglect and hoarding in discussion, perhaps indicating their level of understanding and the combined definition in guidance to the Care Act 2014, as well as a lack of universal definition of self-neglect, as can be noted in many LA guidance documents on self-neglect. There was broad agreement about the causes originating from a combination of poor mental health, trauma, beliefs and social factors, as well as a recognition of the importance of potential conflicts between professional and family/individual norms. Such framing shows a preference for a bio-psycho-social model of understanding, although the importance of health factors and social construction was also evident, suggesting that these perspectives are not mutually exclusive. Only a handful of participants were 'outliers' to this consensus and pointed solely towards medical, namely physical, reasons for the behaviours. However, no matter their understanding of the causes, all participants conveyed a clear understanding of the range and potential severity of the consequences of self-neglect and/or hoarding on older people's physical and mental health, relationships, and living conditions -which extend beyond the individual to their wider networks.
Better understanding the range of causes of self-neglect and/ or hoarding by adult safeguarding managers (as well as frontline colleagues) may assist effective assessment, engagement, risk management and intervention, and, while probably not 'fixing' the problem, aid in the achievement of better outcomes or prevention of severe consequences. This is especially pertinent for older people who can have added complications or risks of health decline. However, current systems mean that cases of self-neglect and/or hoarding often become known to adult safeguarding teams at 'crisis' point, so early reporting and forms of help need to be given greater priority by social care and third-sector organisations, as well as NHS screening and monitoring, reviews and post-diagnostic support and carer support.

AUTH O R S ' CO NTR I B UTI O N S
JW and SM conducted the interviews and data were analysed by JO, JM, NS, MS and SM. JO drafted the initial manuscript, with input from the rest of the team including MT. The article was revised by the team. NS and JM lead the overall study.

ACK N OWLED G EM ENTS
We are grateful to all study participants for their time and input. We thank members of our study advisory group, convened by Sharon Tynan of Age UK London, for their advice and insights.