Assessing Capacity in the Setting of Self-Neglect: Development of a Novel Screening Tool for Decision-Making Capacity

ABSTRACT

Compared with older adults with disabilities and those who autonomously choose to live in squalor, self-neglect syndrome arises from a predicate state of vulnerability in frail older adults. This state of vulnerability is characteristically associated with a decline in decision-making capacity regarding the ability to care for and protect oneself. We developed the COMP Screen to evaluate vulnerable older adults to identify potential gaps in decision-making capacity using a screening tool. A total of 182 older adults were evaluated and consistent declines in cognitive ability and decision-making processes were present in this population. However, there were no significant differences between elders referred for self-neglect and matched older adults. These findings suggest that declines in decision-making processes are not uncommon in vulnerable older adults but traditional conceptualizations of decision-making capacity may be inadequate for differentiating the capacity for self-care and protection in elders who self-neglect.     

Decision-making capacity: the core of self-neglect

Self-neglect in the elderly is a pervasive public health issue that affects 1.2 million elderly each year. In working with self-neglect cases, ethical issues are often raised that challenge all professionals. Professional and family's wishes to remove obstacles to the wellbeing of an elderly may be directly in opposition to the individual's wishes. The core of many ethical dilemmas resides in the question of the individual decision-making capacity. Issues surrounding decision-making capacity are complex with many confounding factors. Through case-discussion, fundamental ethical issues of decision-making capacity relating to self-neglect will be explored and strategies will be offered to resolve these dilemmas.     

Adult protective services clients confirmed for self-neglect: characteristics and service use

Self-neglect is a complex and inadequately understood phenomenon that accounts for the majority of Adult Protective Services cases. This retrospective, record-based study of the characteristics of 210 older adults who were reported to Adult Protective Services and confirmed for self-neglect revealed that common health problems included nutritional frailty, arthritis, and incontinence. Comparisons based upon length of service showed differences in worker-rated social environment risk, client capacity, and activities of daily living performance. Comparisons of findings with those of other studies of self-neglect underscore the need for systematic research on this population.     

Elder self neglect: A geriatric syndrome or a life course story?

AimsTo explore the unique aspects of the elder self-neglect phenomenon and to achieve phenomenological understanding of self-neglect through the eyes of self-neglecting elders.MethodA qualitative study based on a sample of 16 self-neglecting elders. Data collection was performed through in-depth semi-structured interviews, followed by content analysis.FindingsFour major themes emerged from the older participants: “I was unlucky:” a life course of suffering; “That's the way it is:” self-neglect as a routine of life; “They tell me that I'm disabled:” old age as exposing situations of self-neglect; “My empire:” how do I perceive my old age.ConclusionsSelf-neglect is not necessarily an issue of old age, but is related to the person's life history. Self-neglect as a way of life accompanied the participants into old age, but it was not originated or created there. The overall message of the self-neglecting elders was to see them as human beings and not as old neglected people; not to label them as an “age syndrome” but to perceive them in a holistic and humanistic manner.     

Specifying Long-Term Care Provider Responsiveness to LGBT Older Adults

In-depth interviews and focus groups with lesbian, gay, and transgender older adults addressed the question “What does it mean for long-term care providers to be responsive to lesbian, gay, bisexual, and transgender (LGBT) older adults?” Sixteen domains of long-term care provider responsiveness to LGBT older adults were identified, including awareness of centrality of partners, knowledge of importance of preferred gender expression, openness to welcoming LGBT older adults, and ability to create LGBT-safe environments. Future research should include LGBT elders who belong to ethnic minority groups, bisexual elders, and LGBT older adults who do not identify with LGBT labels.     

The social and nutritional meaning of food sharing among older rural adults

In most societies, the gift of food conveys social meaning, as well as nutritional sustenance. While food sharing has been widely noted, there has been little focused study of this practice among older adults in the US, who, as a group, are considered nutritionally vulnerable. We completed in-depth interviews with 145 adults (African American, European American, and Native American) aged 70+ years in rural North Carolina. Our objectives are (1) to describe the types of food shared by gender and ethnicity, (2) to identify values and meaning elders associate with giving and receiving food, and (3) to discuss the nutritional and social contribution food sharing makes to the lives of these rural elders. All elders participated in food sharing, as givers, recipients, or both. It is valued by these elders as a way to maintain reciprocity in social relations and to create a feeling of community membership. For older adults, receiving food gifts may augment a diet limited by income and functional status.     

Correlates of depression in self-neglecting older adults: A cross-sectional study examining the role of alcohol abuse and pain in increasing vulnerability

ABSTRACT

Self-neglect among older adults results in increased morbidity and mortality rates. Depression is strongly linked to self-neglect and when untreated, severely complicates management of health and functional outcomes. The study aims to identify factors correlated with depression to inform approaches to service recruitment and retention that improve long-term outcomes. The sample included urban community-dwelling older adults (n = 96) 65 years of age and older with Adult Protective Services-substantiated self-neglect. All participants completed a range of validated cognitive, functional, and self-report demographic and clinical measures around health and mental health functioning. A secondary data analysis using multivariable logistic regression revealed that a positive screen for alcohol abuse, low self-rated health, and higher self-reported pain were associated with significantly higher odds of self-reported depression. Further research is needed to understand the temporality between these correlates and depression and to inform prevention and intervention practices for self-neglecting older adults.     

The role of social isolation of elders in recidivism of self-neglect cases at San Francisco Adult Protective Services

This study examined the relationship between social isolation of elders and recidivism of self-neglect cases at San Francisco Adult Protective Services. Of secondary interest was an examination of other risk factors: mental health concerns, cognitive deficits, and substance/alcohol abuse. A secondary chart review was conducted on 704 elder clients with confirmed cases of self-neglect in 2004. Bivariate and multivariate analyses showed a positive relationship between substance/ alcohol abuse and recidivism, and a negative relationship between cognitive decline and recidivism. No significant relationships were found for social isolation or mental health concerns and recidivism. This study supports previous research suggesting significant relationships between substance abuse and self-neglect, further demonstrating a need for more substance/alcohol abuse programs for elders.     

Severe self-neglect: an epidemiological and historical perspective

Older adults with severe self-neglect have multiple deficits in various social, functional and physical domains, and often live insqualor. These individuals often present with poor personal hygiene, domestic squalor and hoarding which results in a threat to their own health as well as personal and public safety. Severe self-neglect occurs along a continuum with older adults often having cognitive and affective disorders compared with younger individuals presenting with psychiatric illnesses. In cases of severe self-neglect with hoarding, evidence has shown this behavior occurs in diverse social strata and not among the wealthy and professionals alone as believed earlier. Due to the multiple conditions associated with severe self-neglect, this population will require an interdisciplinary, multidimensional approach to reduce morbidity and mortality rates including nursing home placement. Research on this group has been limited and is rarely described in the medical and nursing literature. Future research is needed to provide practitioners with effective screening instruments and interventions on cases of severe self-neglect.     

Family,welfare state generosity and the vulnerability of older adults: A cross-national study

The availability of family can be considered a protective factor for aging well. In this article, we examine to what extent the family situation of older people creates vulnerability with respect to their quality of life. Because not everyone is vulnerable to the same degree, we try to identify the conditions under which older people benefit more from having family resources. Based on the resources perspective, we argue that the impact of family resources on life satisfaction is stronger for older people with fewer resources at both the individual level (material, physical and non-familial social resources) and the country level (welfare state services targeted at older adults). To test our hypotheses we make use of the fourth wave of the European Values Study, and the MULTILINKS Social Policy Indicators database. In general our data offer support for the idea that the presence of intimate family ties (with partner and children) can be considered an important resource for achieving psychological well-being, whereas their absence or loss may act as a constraint. Our vulnerability argument is partly supported by the findings. Partner resources are more important for the life satisfaction of older people with a low education and health problems. Similarly, having children only improves the life-satisfaction of lower educated older adults. However, family resources are not more important for older people with fewer material resources or for older people living in countries with low services levels targeted at older adults.     

The effects of loneliness on telemarketing fraud vulnerability among older adults

Older adults are disproportionately affected by telemarketing fraud, especially those who are socially isolated. Twenty-eight older adult telemarketing fraud victims completed a questionnaire assessing loneliness and other variables related to telemarketing fraud vulnerability. Victims tended to be male, divorced/separated, and college-educated, between ages of 60 and 70. Age and marital status were significantly associated with loneliness. This study is an important first step for additional research in this area and may enhance the prevention and intervention efforts of social service providers who work with older adults who may be most vulnerable.     

Predictors of falling in older Maryland drivers: a structural-equation model

Falls can impair health and reduce quality of life among older adults. Although many factors are related to falling, few analyses examine causal models of this behavior. In this study, factors associated with falling were explored simultaneously using structural-equation modeling. A variety of cognitive, physical-performance, and health measures were administered to 694 older adult drivers from the state of Maryland. The observed and latent variables of age, cognitive ability, physical functioning, health, and falling behavior were used to create a causal model. The model revealed that being older was associated with declines in cognition, and such cognitive declines predicted increased falling. Similarly, poorer health was related to poorer physical functioning, which, in turn, also predicted increased falling. This model indicates that in addition to existing fall-prevention interventions aimed at improving physical functioning, interventions to improve cognition and health might also be effective. It is speculated that fear of falling, which often results in reduced mobility among older adults, might account for the lack of a direct relationship between age and falling. This hypothesis should be examined in further research.     

Formal Volunteering among Vulnerable Older Adults from an Environmental Perspective: Does Senior Housing Matter?

Based on the premise that environmental support is an important facilitator for engagement in formal volunteering among vulnerable subgroups of older adults, we focus on older low-income individuals who live alone. Drawing on the environmental docility hypothesis, we examine the role living in senior housing has on the likelihood of volunteering. Data came from the 2012 wave of the Health Retirement Study (N = 1415). Kernel weights derived from propensity scores were used to account for observed sociodemographic and health characteristics associated with both senior housing living and the outcome. Logistic regression models showed that living in senior housing positively affected engagement in formal volunteering after adjusting for personal and environmental factors. As a modifiable target of intervention for successful and healthy aging, our findings provide important background knowledge for the development and implementation of housing-specific volunteer programs for vulnerable elders.     

Assessment of older adults’ satisfaction with adult protective services investigation and assistance

This study examined elder self-neglect client satisfaction with services provided by an Adult Protective Services (APS) program. A total of 77 community-dwelling older adults with APS-substantiated self-neglect responded to the standardized and widely used 8-item Client Satisfaction Questionnaire. Approximately 75% of the participants reported being satisfied with the overall services. They felt that the services provided were responsive to their need(s) and helped them deal with their problem(s). Greater than 80% responded that they would refer a friend, would utilize APS in the future if necessary, and were at least satisfied with the amount of help received. The extent to which their needs were met received the lowest satisfaction scores. Future studies are needed to examine elder self-neglect client satisfaction in relation to specific services.     

The Effects of Loneliness on Telemarketing Fraud Vulnerability Among Older Adults

ABSTRACT

Older adults are disproportionately affected by telemarketing fraud, especially those who are socially isolated. Twenty-eight older adult telemarketing fraud victims completed a questionnaire assessing loneliness and other variables related to telemarketing fraud vulnerability. Victims tended to be male, divorced/separated, and college-educated, between ages of 60 and 70. Age and marital status were significantly associated with loneliness. This study is an important first step for additional research in this area and may enhance the prevention and intervention efforts of social service providers who work with older adults who may be most vulnerable.     

Financial decision-making abilities and financial exploitation in older African Americans: Preliminary validity evidence for the Lichtenberg Financial Decision Rating Scale (LFDRS)

ABSTRACT

This study examines preliminary evidence for the Lichtenberg Financial Decision Rating Scale (LFDRS), a new person-centered approach to assessing capacity to make financial decisions, and its relationship to self-reported cases of financial exploitation in 69 older African Americans. More than one third of individuals reporting financial exploitation also had questionable decisional abilities. Overall, decisional ability score and current decision total were significantly associated with cognitive screening test and financial ability scores, demonstrating good criterion validity. Study findings suggest that impaired decisional abilities may render older adults more vulnerable to financial exploitation, and that the LFDRS is a valid tool.     

A National Study of Involuntary Protective Services to Adult Protective Services Clients

ABSTRACT

A questionnaire was sent to state administrators of Adult Protective Services Programs (APS) to learn about involuntary protective services provided by APS to vulnerable adults at risk of abuse, neglect, or exploitation. Data were obtained on criteria used to assess the need for involuntary services, types of services provided, sources of authority for involuntary intervention, the nature and extent of public concern about involuntary services, and the protection of the rights of incapacitated clients. Based on responses from 43 states, less than 10 percent of APS recipients receive services without their consent; and all states providing services involuntarily take steps to ensure the protection of rights. Available information from the study does not support the general belief that adults who self-neglect are more likely than other APS clients to have protective services imposed.     

Vitamin D Deficiency Associated with Self-Neglect in the Elderly

ABSTRACT

Background. Vitamin D deficiency is common in elders. However, little is known about the implications of vitamin D deficiency in elder self-neglect.

Specific Aims. To characterize a group of self-neglecting elders with vitamin D deficiency based on clinical, cognitive, and functional status.

Participants. Forty-four self-neglecting elders referred by the Adult Protective Services.

Methods. Vitamin D status of the self-neglecting elders was based upon serum levels of 25-hydroxyvitamin D (25-OHD). Demographics, cognitive, and functional characteristics of vitamin D deficient self-neglecting elders were described and compared to those without vitamin D deficiency.

Results. Vitamin D deficiency (25-OHD < 25 nmol/L) was detected in 16 out of 44 self-neglecting elders (36%). Self-neglecting elders with vitamin D deficiency had lower scores in the Physical Performance Test and higher scores in the Kohlman Evaluation of Living Skills, compared with those who were not vitamin D deficient (p = 0.014 and p = 0.018 respectively).

Conclusions. Vitamin D deficiency is common in elder self-neglect. Self-neglecting elders with vitamin D deficiency have impaired physical performance and inadequate living skills, which can be potentially improved by treating vitamin D deficiency.     

An Adult Protective Services' View of Collaboration With Mental Health Services

Mental Health Services (MHS) meet mental health needs of older adults through active, outpatient, community-based care. Adult Protective Services (APS) are involved with needs of older adults who have mental disability and mental illness. Adult Protective Services and MHS staff may to work together when they respond to the needs of victims and adults at risk for abuse, neglect, self-neglect, and exploitation. The purpose of this study was to understand effective APS–MHS collaborations (e.g., leadership, organizational culture, administration, and resources in predicting success). A survey that was sent to members of the National Adult Protective Services Association (NAPSA) revealed that both APS and MHS have strong commitments to protecting clients' rights and autonomy, but there appear to be differences between the two with regard to implementation, apparent in cases involving clients with diminished mental capacity who are at imminent risk, but who refuse help. Strengths of APS–MHS collaborations included improved communication and better service for at-risk clients.