Development of a Conceptual Framework for Severe Self-Neglect by Modifying the CREST Model for Self-Neglect

Background: Self-neglect is the inability or refusal to meet one’s own basic needs as accepted by societal norms. Self-neglect is the most common report received by Adult Protective Services (APS), state agencies charged with investigating abuse, neglect, and exploitation of vulnerable adults. Older adults who self-neglect have substantially higher mortality rates than adults who have never been reported to APS. With the burgeoning of the older adult population, the commonness of self-neglect, especially in community-dwelling older adults, will most likely increase as the current incidence rate represents only the ‘tip of the iceberg’ theory as most cases are unreported. While awareness of elder self-neglect as a public health condition meriting investigation and intervention has significantly risen in the past decade as evidenced by the increasing amount of literature available, research on self-neglect still lacks comprehensiveness and clarity since its inception to the medical literature in the late 1960s. Current and past literature focuses almost exclusively on identifying and defining self-neglect, which has been a critical undertaking given the dearth of literature prior to the last decade. A number of studies report the complex nature of self-neglect, yet the lack of a standard definition makes it difficult for the condition to be mutually recognized and studied by healthcare professionals. Most of the definitions are either lengthy and/or do not reflect the seriousness of self-neglect if left unrecognized and untreated. The purpose of this review of literature is to develop a conceptual framework by modifying the CREST model for self-neglect and to provide a definition for severe self-neglect for future research.

Methods: The literature review included searches in PUBMED, SCOPUS, MEDLINE, and CINAHL using the following key terms: self-neglect, older adults, senile breakdown syndrome, social breakdown, Diogenes’ syndrome, elder abuse, elder mistreatment, neglect, elder neglect, executive dysfunction, and impaired cognition. Inclusion criteria for article selection were those written in English and persons 65 years of age and older who self-neglect. Exclusion criteria included persons less than 65 years of age and experienced other forms of elder abuse such as caregiver neglect, financial exploitation, and physical abuse without mention of self-neglect.

Results: Self-neglect occurs along a continuum ranging from mild to severe in nature. For the purpose of this conceptual framework, severe self-neglect will be used. Severe self-neglect is defined as an unawareness to the hazardous and progressive decline in personal, social, physical, mental, and/or environmental domains leading to the inability to maintain cultural and community standards of acceptable living that threatens one’s own safety, health, and quality of life. The purpose of this definition is to describe a phenomenon that is complex and progressive while clearly highlighting the lack of awareness to one’s hazardous state of health. The conceptualization of severe self-neglect is that it develops from two key factors: presence of known predictors, including cognitive decline, stressful life events, prior hip fractures, and living alone, among others, and the development of executive dysfunction in association with any of a number of risk factors such as impaired cognition, advanced age, untreated medical conditions, and frailty. When either of these two key factors is present, older adults develop functional disabilities, which may lead to a decline in their personal and/or environmental domains. Informal caregivers may attempt some form of intervention to aid older adults who self-neglect, yet self-neglecters often refuse to accept help. Refusal is a cardinal feature of severe self-neglect. When older adults who self-neglect refuse nursing, medical, and/or social intervention, it is hypothesized that a progressive decline in their personal, functional, environmental, and social domains ensues. This decline manifests as poor personal hygiene, filthy environments, hoarding unnecessary items, medication non-adherence, malnourishment, rotting or spoiled food, or delirium, to name a few. What remains to be tested is the absolute presence, absence, or combination of the manifestations in self-neglect.

Conclusions: A conceptual framework and a new definition for severe self-neglect is proposed as a foundation for further research. This framework can be used in clinical and community settings to aid health care professionals in identifying severe self-neglect. In doing so, treating these individuals may prevent an early death and possibly reverse or abate this complex health problem to increase quality of life. Current knowledge of severe self-neglect is based on studies of individuals already in a state of severe neglect. Collaboration among different disciplines is needed to intervene on these complex cases. The nursing, medical, and social literature lacks any prospective, longitudinal data as to the exact onset of self-neglect, which must be addressed in future research.