Self-Neglect and Hoarding

A Guide to Safeguarding and Support

Deborah Barnett

• Publisher: Jessica Kingsley Publishers
• Year: 2018
• ISBN:
  9781784505691
• Topic: Psychologie
• Subtopic: Psychotherapie

Self-neglect and hoarding is present in 1 of 5 social work cases in mental health and older people's services. These cases can be the most alarming and challenging on a social worker's caseload.

A skilled, thorough risk assessment of the behaviours of self-neglect is needed in order to ensure effective care and support is available. This guide offers practical and applicable tools and solutions for all professionals involved in working with people who self-neglect. It includes tips for assessment and decision-making in the support process, and updates following the implementation of the Care Act 2014, which deemed self-neglect a safeguarding matter.

Chapter 1

WHAT IS SELF-NEGLECT
AND HOARDING?

Defining self-neglect and hoarding

The statutory guidance to the Care Act (2014) identifies self-neglect as a safeguarding responsibility, covering a wide range of behaviours. It is neglecting to care for one’s personal hygiene, health or surroundings, and also includes behaviour such as hoarding.

There are no prescribed characteristics of a person who self-neglects and no ‘evidence-based’ risk factors identified within the UK. There is no screening tool for practitioners, therefore all tools and models are currently developed and utilised from practice and experience, including those identified within this book. The Care Act 2014 definition of self-neglect is limited in its scope and definition. The National Adult Protective Services Association (NAPSA) combined definitions of self-neglect from 28 States of America and defined self-neglect as:

The result of an adult’s inability, due to physical and/or mental impairments or diminished capacity, to perform essential self-care tasks including: providing essential food, clothing, shelter and medical care; obtaining goods and services necessary to maintain physical health, mental health, emotional wellbeing and general safety; and/or managing financial affairs. (Bozinovski 2000, p.38)

People who self-neglect can go without food, water, adequate clothing, warmth or appropriate housing, access to the toilet or bathing facilities and required medication or treatment. Problems may (but not always) include poor personal hygiene, not paying bills and neglecting the safety of the individual or others. Gibbons, Lauder and Ludwick (2006) identify that self-neglect includes decisions made by capacitated people, as well as those who lack capacity to make decisions with regard to self-care.

The impact of self-neglect can be significant, not just for the individual but also for the family and wider community. Public health issues such as toxic substances, rats, flies or vermin, exposed wiring, mould, structural decay of the property and an increased fire risk can pose a risk to others. Children or other adults living or visiting the property may be at risk, as well as those living nearby.

Social isolation presents a significant risk to the individual because it is difficult for humans to exist without personal contact. The addit-ional medical and environmental risks mean that self-neglect can lead to the death of a person if appropriate support is not offered or accepted (Dong, Simon and Evans 2012; Dyer, Pickens and Burnett 2007).

In assessing whether someone may be self-neglecting there is an element of judgement, which is particularly noticeable at the lower end of the self-neglect scale. Many practitioners have anecdotally described to me these differences when exploring self-neglect within training events. A social worker (mental health), nurse and paramedic were all exploring their concepts of self-neglect. The paramedic described a smelly and dirty house, the nurse described someone who was capacitated and not accepting medical treatment and the social worker described self-neglect as the person’s physical and mental wellbeing affected due to inability or refusal to accept support and she described quite extreme elements of self-neglect, such as excessive hoarding, deteriorating physical wellbeing, often exacerbated by substance misuse. Self-neglect may be a social construct (Lauder 2001; Lauder, Anderson and Barclay 2002; Orem 1991) influenced by social, cultural and professional values and that self-neglect is not an objective phenomenon. Bozinovski (2000, p.52) concurs with this belief and states, ‘Self neglect is not an objective, measurable entity or process’, going on to describe self-neglect as being a social construct, with the labelling of self-neglect defining this social construct as a problem.

In the absence of operational definitions some researchers have tried to establish common concepts of self-neglect across practitioners. This concept mapping was utilised by Iris, Ridings and Conrad (2010) and addressed the need for a validated psychometrically reliable assess-ment. While this study focused on older people who self-neglect, these clusters may be useful in assessing all those who self-neglect. Their review produced 73 individual indicators which they clustered into seven conceptual areas:

1. Physical living conditions

2. Mental health

3. Financial issues

4. Personal living conditions

5. Physical health

6. Social network

7. Personal endangerment.

This concept of self-neglect moved from the psychosocial models described by Bozinovski (2000) to a wider concept, influenced by the individual’s physical, cognitive, functional, social and financial status. Iris et al. (2010) considered risk levels within each cluster. Many studies have considered variables and factors within self-neglect and have been largely unsuccessful in determining specific reasons for self-neglect. I shall utilise six of the seven concept areas identified by Iris et al. (2010) to describe some of these potential variables (personal living conditions have been incorporated into the other concepts):

Economic resources available

Social resources available

Mental health

Poor mental health

Depression

Autistic spectrum disorders

Impaired cognitive functioning

Alcohol/substance misuse

Anxiety and stress disorders

Traumatic histories and life-changing events

Frontal lobe dysfunction

Impulse control disorders

Psychosocial history

Attachment issues

High perceived self-efficacy

Financial issues

Financial exploitation

Targeted financial abuse

Inability to manage finances

Debt

Economic resources available

Social resources available

Physical health

Poor physical health

Impaired physical functioning

Economic resources available to enable good health

Nutrition and vitamin deficiency

Social network

Diminished social networks

Isolation

Work

Leisure

Contact with the family

Contact with the community

Acceptance of help

Personal endangerment

All variables mentioned above.

There are many more variables that could contribute to someone self-neglecting and many of these variables coincide with each other or overlap and therefore, ‘there is no typical case of self-neglect’ (Bozinovski 2010). The complexity of working with someone self-neglecting comes from the barriers presented by the person, access to services, conflicting perspectives and judgements and no definitive assessment process. These barriers are affected by our judgements, values and professional attitudes towards self-neglect.

One of the greatest barriers presented to practitioners is the person themselves, not accepting help and support in increasingly difficult or dangerous circumstances. Looking at the variable reasons for self-neglect, the reasons for not accepting help may be equally variable: a person who is self-neglecting after suffering abuse or neglect may not wish to disclose their abuse or subject themselves to describing the issues and how they affect them. A person suffering from loss and bereavement may not wish to disclose the strength of their emotions and the sensitive issues around relationships. It can be very difficult for people who require care and support to accept that there is a need for intervention, that they are no longer in control of an aspect of their ability to look after themselves.

Having life is about creating opportunities, developing personal identity, feeling safe and secure, and having the ability to be autonomous and independent. These skills are developed over a lifetime, beginning in childhood and are an elemental aspect of human function around creating happiness, security and a sense of belonging. When these skills deteriorate, or are not functioning to support people in their concept of a good life, people can hold on to a need to remain independent. A person self-neglecting may not want to admit to themselves that they are no longer able to provide for themselves and try to maintain independence at the cost of their physical and emotional wellbeing. Many people who have major and multiple impairments or disabilities continue to feel that their self-interest is best protected if they control self-care decisions and activities. This therefore can affect the willingness of the person to accept assistance (Rathbone-McCuan and Fabian 1992). Perhaps the lack of time afforded to develop a rapport with the individual before any action is taken can present a barrier in itself.

Dyer et al. (2007) identified that elder self-neglect is one of the most common types of abuse reported in American adult protective services, finding it three times more common than physical abuse. Accurate statistics are difficult to gather from the UK as there is no singular forum for collecting this data. It is easy to recognise why self-neglect is such a huge area and is further complicated by elements of hoarding and the risks associated with hoarding behaviours.

Hoarding disorder

The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (American Psychiatric Association 2013) identifies hoarding as a distinct disorder. The first DSM was published in 1952 and has been regularly revised since. It is an American publication used to varying degrees by professionals around the world. Psychiatrists, psychologists, policy makers, pharmaceutical companies and insurance companies all use the DSM and make reference to it.

The DSM-4 listed hoarding as a subtype of obsessive compulsive disorder (OCD) and referred to it as ‘compulsive hoarding’. Studies have shown that about one third of people diagnosed with OCD have a hoarding disorder; however, in studies involving people who hoard, just under a quarter of them report to have OCD symptoms (Frost and Steketee 2011). OCD symptoms feature intrusive thoughts which provoke compulsive actions to alleviate the distress, discomfort and anxiety created by the intrusive thoughts and the person does not experience any positive emotions throughout this process. Many people who hoard report that they feel calm, safe and happy in acquiring objects, sometimes referring to this as ...