Self-Neglect: A Challenge and a Dilemma
Article Outline
“Inquest into death of a lady in the West of Ireland had a verdict of self-neglect. The nation was rocked to hear the death had occurred 3–12 months earlier, the body was very decomposed and the deceased had lived in a cluttered and unhygienic environment, reclusive and secluded from community and siblings in her own home” (Western People, 2004).
These type of media reports are rare and the dread of any professional working within the area of health and social care services. Do we address the issue or the impact? What do these media reports tell us? To me, media reports portray the serious consequences and risks that living in self-neglect can present for affected individuals, families, and communities. Do they tell us that society has failed in some way to protect these people? Could we have done something? Whose problem is it anyway? How can we identify these people? What is the impact? Is self-neglect overshadowed by elder abuse? What do we understand by the term self-neglect?
These are many of the questions I have raised and discussed with a variety of people over the last year. My experience of working as public health nurse, researcher, and educator of postgraduate public health nursing students has contributed to my interest in the area of self-neglect. The community nursing service in southern Ireland developed policies and procedure for the “Management of self-neglecting clients in the community” (Health Service Executive [HSE], 2005), and anecdotally this is one of the most used policies and procedures. The literature on self-neglect in Ireland has come from a medical perspective only adding to my interest in seeking to understand it from a nursing and social perspective.
To set it in context in Ireland, the term self-neglect is a broad umbrella term used to describe situations of where there can be self-neglect squalor and hoarding. The term most used in Australia is domestic squalor; however, on attending the first international conference on squalor recently in Australia, it was suggested by a customer of the Catholic Community Services that the focus should be on “living conditions” and not “squalor.” Self-neglect is equated with elder abuse by a number of states in the United States and considered as an aspect of elder abuse (National Centre on Elder Abuse, 2006; Teaster, 2003). This differs to the approach taken in Australia and Europe and countries such as Ireland and the United Kingdom where self-neglect is not included in the definition of elder abuse because it does not occur within a relationship of trust. However, self-neglect can occur as a consequence of abuse or the reverse can be true that self-neglecting clients can be vulnerable to abuse. This does not require self-neglect to be equated with elder abuse.
Adult Protective Services were established in Ireland in 2006 with the appointment of 32 senior case workers (social workers) for elder abuse. Procedural policy documents identified a role for senior case workers in assessment of self neglect when it stated that “extreme levels of self-neglect” or where older persons are “seriously neglecting their own care and welfare putting themselves or others at serious risk” (HSE, 2009, p. 91). Different views and perspectives can be held by different people on what constitutes self-neglect and severe self-neglect. There are no specific assessment tools guiding this assessment of severity by public health nurses, social workers, or community professionals. Attending the first international conference on squalor in Australia recently, I found that they are using the Environmental Cleanliness and Clutter Scale (Halliday & Snowdon, 2009), a descriptive measure developed by two psychogeriatricians to assess severity and vulnerability of the environment. There are wide regional variations on self-neglect statistics, raising issues in relation to referral and communication of cases to Adult Protective Services. Different perceptions and views on classification of self-neglect may be one reason, and other reasons suggested were that there was more awareness due to the area being a pilot site prior to the setting up of Adult Protective Services nationally. From my experience and discussions with groups of nurses (public health nurses, community mental health nurse, community intellectual disability nurses), I would suggest that these figures are only the tip of the “iceberg,” as many cases go unreported or are unknown to services. Cases of self-neglect may only come to the attention of services when people are older and consequences are life threatening. Mortality at this stage is very high. Added to this, the term self-neglect is used to describe a complex multidimensional phenomena. Self-neglect can present along a continuum of severity ranging from failure to attend to self-care; leaving bills unattended, noncompliance with treatment regimes, not eating or drinking, service refusal with evidence of self-neglect; to dilapidated homes and environments, faulty electrics, hoarding of rubbish, squalor and hoarding of animals. A key question will be, Is the self-neglect a deliberate action by the person or is it unintentional and are there underlying causes? Self-neglect is frequently accompanied by chronic illness, mental health problems, or cognitive impairment compromising individual's capacity for self-care, independence, and protection. Is it a matter of choice, a lifestyle factor, is it related to underlying social issue, bereavement, poverty or living in the past? Building of relationships and trust is important in approaching clients who self-neglect.
The approach taken to assessment of decision-making capacity and competency by professionals in the community is a referral to the geriatrician, psychogeriatrician, or psychiatrist. Legislation in Ireland on assessment of decision-making capacity is in the context of payment for long term-care is very new (Government Publications, 2009). This requires two registered medical practitioners to assess utilizing a predetermined decision-making assessment framework. There is also a Bill format of Capacity and Guardianship (Department of Justice, Equality & Law Reform, 2008) under ongoing review, but this as yet has not been legislated for in Ireland, although this was recommended by the Law Reform Commission (2003). Policies and procedures to support best practice in identification, management, and solutions focused interventions for this very complex phenomenon crosses a wide array of agencies, services, and government such as a health, social work, police, law, housing services, and the environment. This in itself can pose significant challenges in relation to achieving a person-centered, multidisciplinary focused solutions and interventions. One such challenge maybe the clean up and interventions relating to hoarding. What are the self-neglect person's beliefs in relation to the hoarded items? The taking away and clean up can be viewed as rape, and there can be a high risk of suicide as a result of decluttering if not managed appropriately. The involvement of a clinical psychologist and behavioral and cognitive approaches may be necessary. There are large financial and human resource cost implications in the clean up, and reoccurrence of hoarding and squalor can be quite high. The health and safety risks associated with professionals entering environments where there is severe squalor and neglect can also be challenging for professionals services and agencies. The fire safety risks for individuals, families, and communities and the cost of a fire are high when people live in squalor. The time factor involved in building relationships, challenges in relation to caseload management in a time of scarce resources, whereby people are continuously challenged to look at outcomes and value for money. The ethical challenges and dilemmas can relate to autonomy beneficence, nonmalificence, capacity, and self-determination. Senior case workers and public health nurses in particular are challenged on a daily basis in the delivery of health and personal social services to adults and older people who self-neglect. Ageing populations, chronic illness, disability, and poverty will put more people at risk of self-neglect. Self-neglect goes largely unnoticed, but yet, when you ask anyone about it, everyone knows somebody with it. Let us talk and let us educate people about this complex multidimensional phenomenon.
References
- . Mental capacity and Guardianship Bill (Seanad) Bill no. 1,3. Ireland: House of the Orieachtas; 2008;
- . Nursing home support scheme (assessment of capacity report) Regulations. Dublin: Stationery office; 2009;
- . The Environmental and Clutter Scale (ECCS). International Psychogreiatrics. 2009;21:1041–1051
- . HSE elder abuse service developments open your eyes. Ireland: Health Service Executive; 2009;
- . Policies procedures and guidelines' for the care of the older adult in the community. Cork & Kerry Ireland: Health Service Executive; 2005;
- . Consultant Paper on Law and the Elderly. Dublin: The Law Reform Commission; 2003;
- . A response to the abuse of vulnerable adults: The 2000 survey of state Adult Protective Services. http://www.elderabusecenter.org/pdf/research/apsreport030703.pdf2003;(Accessed 17/02/2010)
- . Aghamore pensioner died of self-neglect. http://archives.tcm.ie/westernpeople/2004/02/18/story18238.asp2004;(Accessed 17/02/2010)
PII: S0883-9417(10)00008-7
doi:10.1016/j.apnu.2010.02.002
© 2010 Elsevier Inc. All rights reserved.
