Vulnerable Elders: Title and subTitle BreakWhen It Is No Longer Safe to Live Alone

In 2004, state-level adult protective service agencies across the United States received more than 600 000 reports of elders who were in need of protection.¹ The New York City Department of Aging estimates 50 000 cases of elder mistreatment in the boroughs, even though only 1600 instances are reported.² Some elders experience physical abuse, caregiver neglect, and financial exploitation, but the most common report to adult protective service agencies in the United States is self-neglect, a syndrome that afflicts vulnerable older adults who are not able to meet basic needs.^{2 - 3} Self-neglect, often discounted as a harmless peculiarity of old age, is actually an independent risk factor for early death.³ Elders neglecting themselves usually live alone. They display behaviors such as piling garbage inside the home, allowing food to spoil, failing to maintain utilities in the home, ignoring serious medical issues, and even lying in their own excrement. In most jurisdictions, elder self-neglect is a reportable form of elder mistreatment, as are physical abuse, caregiver neglect, and financial exploitation.⁴

Americans are fiercely independent, a highly valued personal trait respected by most health care professionals. In some instances, however, when older persons no longer can care for themselves, their personal health, well-being, and even their lives are at risk. Research is needed to develop evidence-based screening tools so that clinicians and their caregiving teams know when and how to intervene.

Title XX of the Social Security Act, passed in 1974, mandates states to develop and maintain protective service agencies for senior citizens.⁵ Since 1981, each state has established its own agency dedicated to protecting vulnerable older persons. By law, these agencies are charged with receiving reports of suspected abuse from family members and persons known by elderly individuals, conducting investigations, and delivering services to elderly individuals whose cases are substantiated. However, the characteristics underlying causes and effects of self-neglecting behavior are poorly defined and not well understood.

Throughout the United States, adult protective service agencies have worked collaboratively with medical house-call teams, such as the Vulnerable Adult Specialist Team (VAST),⁶ the Linking Geriatrics with Adult Protective Services,⁷ and the Texas Elder Abuse and Mistreatment (TEAM) Institute.^{8 - 10} In its more than 10 years of assessing and treating clients who had been referred by the local adult protective service agency, the TEAM Institute, based in Houston, has collected clinical data for 538 cases and has found that there are 10 broad categories for referral.¹⁰ Some of these included lack of utilities, an unsafe environment, cognitive disorders, questionable medication adherence, capacity evaluation, and poor personal hygiene. Of the 527 cases (97.9%) for which reasons for referral were provided, 304 (57.6%) cited only 1 reason for referral, but 183 (34.7%) had 2 reasons and 40 (7.5%) had 3 reasons.¹⁰

Although some self-neglect is mild and has little consequence, self-neglecting behaviors in vulnerable elders can be severe, posing extreme health and safety consequences. The manifestations clearly occur along a continuum. Some elders who neglect themselves fail to discard excess mail or clean their homes thoroughly, others neglect to refill prescriptions or keep scheduled medical appointments, and still others live in abject squalor without electricity and other utilities. In the most egregious cases, elders are found lying in their own excrement and their homes laden with animal feces and roaches. Over the past decade, house-call members at TEAM frequently see the homes of seniors with broken floorboards, holes in the roof, and inadequate plumbing.

The health consequences of self-neglecting behaviors include untreated medical diseases, such as hypothyroidism, diabetes, or cancer. The filth, lack of medical care, and lack of basic amenities represent marked health hazards. These issues are problematic for health care professionals and health care systems. Many vulnerable elders have limited access to health care. Some defer or decline treatment due to lack of judgment. When they are ill and become hospitalized, some elderly patients are unable to relate their medical and social histories. Many of these elderly individuals are incapacitated and have no surrogate decision makers.¹¹ Searching for family members or waiting for guardianship proceedings can delay care and increase costs.

Sometimes the clues to vulnerability are not readily apparent to health care professionals. Hospital staff or outpatient clinicians often do not have the opportunity to observe the home environments of their vulnerable older patients. As a result, these patients are often discharged back to unsafe living situations. The lack of evidence-based risk factors and screening tools limits the clinician's ability to detect those at risk and the lack of epidemiological data has stymied intervention trials. In treating elders of all classes and races, caregivers must be trained to look for telltale, multidimensional signs of abuse and neglect.

Although the first medical report on physical abuse of older adults was by Burston in 1975,¹² self-neglecting behaviors were described as early as 1957 by Macmillan and Shaw.¹³ They reported cases of elders, admitted to Bellevue Hospital, who were found living in squalor.^{13 - 14} These individuals had a variety of neuropsychiatric disorders, such as dementia, depression, or psychosis. Still others presented with manifestations of self-neglect and no identifiable diagnosis. Some authors have described Diogenes syndrome,¹⁵ most likely a variant of self-neglect, in which individuals hoard objects, such as books or garbage. These reports described elders with degenerative neurological disease, younger individuals with life-long mental illnesses, or a third group who display habits of hoarding or overcollecting.^{15 - 16}

Verifying self-neglect is problematic because most of the data are collected by adult protective service agencies. Epidemiologists, medical researchers, and health care policy makers need measures currently unavailable because states use varying definitions: 6 states do not have mandatory reporting laws for elder mistreatment, and in 37 states,¹⁷ self-neglect is included, not mandated as a reportable condition. Two national studies reported the prevalence of self-neglect to be 50.3%⁴ and 39.1%, respectively,¹⁸ among adult protective service cases of adults 60 years and older. In a case-matched study of both the Established Populations for Epidemiologic Studies in the Elderly (EPESE) database and the records of the Connecticut Ombudsman's Office, self-neglect made up 72.7% of the adult protective service cases.¹⁸ In a population-based study of the Texas adult protective service agency, 62.5% of the cases were referred for self-neglect of which 90% occurred in persons 65 years and older.¹⁹

As awareness about the extent of elder abuse increases, reports of self-neglect also are increasing. Data from adult protective service agencies for 2000 and 2004 in a recent survey by the National Center on Elder Abuse showed that self-neglect remained the single most common category of substantiated elder abuse reports.¹ The data demonstrate a 34% increase in self-neglect investigations over a 4-year period because of the increasing numbers of vulnerable adults willing to acknowledge a problem. As a consequence of the current demographic shift, the problem of elder self-neglect is expected to increase exponentially.¹

Until recently, many health care professionals did not pay attention to self-neglect by vulnerable elders believing these behaviors were simply a lifestyle choice. Unlike children, adults are presumed to be autonomous, a presumption that holds for those with normal cognition, even though some self-neglecting behaviors may not represent a lifestyle choice.

Family, friends, and neighbors must deal with vulnerable elders losing decision-making capacity and the capacity to execute tasks. Cognitive impairment is the most likely cause of this lack of judgment and executive dyscontrol. A disruption in the ability to plan and carry out tasks may prevent certain elders from taking the necessary steps for self-care and self-protection. Lack of capacity makes these elders vulnerable and is the reason it becomes unsafe for them to live alone.^{10 ,20}

With so many family members living long distances from each other, family bonds sundered by divorce, and a rapidly increasing aging population, it becomes even more imperative to assess whether patients are capable of living alone safely. Studies are needed to make these determinations accurately and preserve the autonomy of those who are able to protect themselves and intervene with those who cannot. It is wrong to impose medical or social remedies on eccentric elders who have capacity, but health care professionals should not allow cognitively impaired elders to live in extreme squalor without either electricity or running water.

Adult protective service agencies across the United States with little to no evidence-based data to guide them have been shouldering the burden of providing for the needs of elders who neglect themselves. Interdisciplinary research by the medical, nursing, social work, legal, and public health communities are needed. Medical and nursing researchers could study issues, such as associated disease states; social scientists could examine community supports and resources; legal scholars could address mental capacity and protection against exploitation; and public health researchers could look at the epidemiology and social impact. These studies could provide health care professionals; social service agency personnel; civil attorneys; law enforcement officers; and local, state, and federal governmental leaders with the tools to determine when the safety of elders is in jeopardy.

Such research could have cost-containment potential. States spent an average of $8.5 million in 2004 on adult protective service programs, which represents a 20% increase from 2000.¹ Extrapolating these data to all 50 states, adult protective service expenditures in the United States in 2004 are estimated to be just under $500 million.¹ Early interventions could reduce the case loads of adult protective service workers, costs of hospitalization, and nursing home placements while increasing quality of life.

If self-neglect in vulnerable elders remains unchecked and understudied, it will affect more elders as baby boomers age, drain more health and social service resources, and result in more elders living and dying in unsafe situations.