Read the full evidence outline that provides an overview of the literature around self-neglect (including references).
Self-neglect is one of the key challenges in adult care. Research has identified that health and social care professionals often find self-neglect cases personally and professionally difficult, with ethical and legal considerations, particularly where adults have the mental capacity to refuse support. And while awareness of self-neglect has risen in the past decade, research and evidence is still lacking, with a focus on older people, and rarely progressing beyond definition and identification. There is a noticeable absence of studies on intervention and on lived-experience.
What is self neglect?
Self-neglect is a complex, multi-dimensional concept. The behaviours are hard to define, measure and address and, as a result, there are many definitions of self-neglect, but no accepted standard, nationally or internationally, which is likely to have limited research opportunities.
At its most basic, self-neglect is an inability to care for your basic needs. It can include cumulative, diverse behaviors that threaten self-care, combined with resistance to receiving care from others. Characteristics can include an inability or unwillingness to manage one’s personal affairs or perform essential tasks, such as dressing or feeding appropriately; persistent inattention to personal hygiene, health and surroundings; repeated refusal of services which can be expected to improve quality of life; and lack of self-care through unsafe behaviors leading to physical or emotional harm or pain
Who is affected?
Lack of definitional clarity means prevalence studies are inconsistent and few cover the general population. But the numbers of adults who self-neglect are increasing, and due to an ageing population and underreporting will likely continue to do so. The Covid-19 pandemic, and the responses to it are also likely to have exacerbated the incidence of self-neglect.
How does it manifest?
There is no one typical presentation of self-neglect. Self-neglect exists as a set of maladaptive behaviours, and an unhealthy behavioral and/or socio-environmental condition including poor personal hygiene; poor diet and nutrition, including obesity and eating disorders; inappropriate or inadequate clothing, including lack of necessary medical aids; unsafe home environment and neglecting household maintenance; hoarding and animal collecting; refusal of treatment and resources; and non-compliance with medication regime and non-attendance at medical appointments
Consequences and adverse outcomes
Self-neglect is associated with adverse outcomes and multiple comorbidities and can result in deterioration of physical and mental well-being; increased mortality; risk of fire, particularly related to hoarding; falls and trips; poor housing structures, lack of repairs, loss of accommodation, homelessness; infection or vermin; risk to others, including visiting professionals and emergency services; and increased use of health-care services, hospice care, hospitalisation, and emergency department visits
Causes, predictors, and risk factors
The manifestions and consequences of self-neglect are tangible and visible and easier to recognise. But unlike other kinds of abuse or neglect there is no ‘perpetrator’ which makes establishing the causes difficult. And with more entrenched behaviour, these causes may be difficult to unearth especially if an individual is themself unaware of the triggers. This makes it difficult to define and develop interventions.
There are multiple attempts at listing or explaining the cause and risk-factors associated with the development of self-neglect, alongside a general agreement that no one theory can explain it. These include physical or mental illness; obsessive compulsive disorder or hoarding disorder; reduced motivation as a side effect of medication; substance misuse and addictions; traumatic life event or loss; isolation and poor social support; beliefs and cultural / life views; and poor economic circumstances, poverty and deprivation.
Best practice / interventions
Providing successful interventions to help people who are self-neglecting and hoarding is challenging and there is little supporting evidence of effective interventions. While there are agreed upon areas of best practice these derive more from accumulated practice wisdom than formally evaluated interventions.
The key themes from the literature for effective approaches, including multi-agency working; person-centred approaches; good risk management; identifying underlying causes to help address the issue; taking a long-term approach; and regular engagement and gentle persistence.
Barriers and challenges
Supporting people who self-neglect or show hoarding behaviours may be professionally and personally challenging. Self-neglect is a spectrum of behaviours associated with increased morbidity, mortality and impairments in activities of daily living. Its complexity combined with inadequate knowledge and awareness of self-neglect means there is little research to understand how a range of factors might lead to behaviours that lead to self-neglect.
This has resulted in limited interventions, supporting resources and systems, lack of joined up systems and standardised protocols, and insufficient training for the workforce. Many practitioners are left struggling with cases, feeling alone and isolated,
There is a need for a conceptual / behavioural framework and standardised definition of what self-neglect is, which could provide a clearer directional plan for identification, assessment and intervention, and allow comparisons of study results across disciplines. Collaboration among different disciplines is needed to intervene earlier to arrest or reverse the progression of self-neglect.
Suggested citation: Sanders, R (2022) ESSS Outline: An overview of self-neglect. Iriss. https://doi.org/10.31583/esss.20220801