Abuse,neglect and exploitation in assisted living: an examination of long-term care ombudsman complaint data

Long-term care ombudsmen are advocates who empower and assist residents with complaints relating to quality of care and violations of resident rights in assisted living (AL) and skilled nursing facilities (SNF). Given that long-term care residents are vulnerable to elder abuse, neglect and exploitation (ANE), and existing gaps in the literature addressing ANE in AL, more research is needed to understand the prevalence of ANE in these communities. Ombudsman complaint data (n = 140,497 complaints) in 3,171 Texas long-term care facilities were analyzed using proportion Z tests. Findings showed that SNF had higher rates of ANE per resident. For both AL and SNF, verbal/psychological abuse was the most reported type of ANE and sexual abuse was the least reported. AL residents had disproportionately high rates of financial exploitation. We explored factors that may contribute to these findings and recommend strategies for preventing ANE.     

Formal and informal care: discontinuities in a continuum

Informal caregiving by family, friends, neighbors, and self-help groups is being given greater attention as human-service policy seeks to establish a continuum of care knitting together professional efforts and informal helping. However, there are many contradictions in assumptions and perspectives about who should handle problems and in what way. Alternative modes of interaction are outlined to indicate the variety of relationships that have developed in response to differences in assumptions about care. Collaboration between formal and informal helping efforts requires that the informal sector be able to influence professional and organizational expectations regarding responsibility, authority, and credibility.     

From the streets to assisted living: perceptions of a vulnerable population

The rapid growth of assisted-living facilities is paralleled by the necessity to understand the needs of the people living in them. A hallmark challenge for individuals who are poor and disabled, and often marginalized from mainstream society, is maintaining integrity and being a whole person, rather than a sum of broken parts. A key to maintaining this integrity is the ability to find stable housing and support systems. The inner-city assisted-living facility in this study is unique in that all of its residents are funded by Medicaid. The residents have complex needs related to histories of homelessness, mental illness, drug and/or alcohol addiction, and chronic illness. The purpose of this study was to explore the needs of this vulnerable population as they adapt to a new home and a new concept of assisted, yet independent, living. Structured interviews with key informants and oral survey questionnaires with residents provided quantitative and qualitative data about physical and mental health status, social support, perception of control, psychological wellbeing, and life satisfaction. This study provided valuable insights into the challenges inherent in providing a high quality of life in assisted living for a vulnerable population with diverse needs.     

Resident and family perspectives on assisted living

This research describes and compares the relative importance residents and family members place on attributes of the environment, the programs, and the policies of assisted living; describes their satisfaction with these features; and identifies factors associated with congruence between residents' and family members' ratings of importance and satisfaction. Both residents and their family members had high importance and satisfaction ratings. Family members gave the assisted living setting lower satisfaction ratings on all features than did residents. Congruence ranged from 34% to 71% for importance items and from 29% to 63% for satisfaction. Female residents, affectionate family relationships, and residing in an AL owned by a chain were positively associated with congruence on importance items, while resident and family education, resident income, and family involvement were negatively associated with congruence on importance items. For congruence on satisfaction items, having an affectionate relationship was positively associated and higher ADL dependency, more family involvement at the facility, and family members who viewed the facility as a safe place were negatively associated with congruence. This study makes a major stride forward because cognitively intact residents' perspectives are compared and contrasted with their own family members' perspectives, thus showing that residents and family members are two distinct groups, each with a unique set of preferences.     

The continuum of dependent family care: a theoretical explanation and model

ABSTRACT

Caring for dependents with disabilities and how this type of care differs from the care of typically developing dependents has largely remained unaddressed in the work–family literature, partly because of a lack of theoretical development on the concept of dependent family care. Studies examining dependent family care often apply a life course perspective, missing key disability factors influencing dependent family care demands and need for resources. This article develops a theoretical framework of dependent family care that accounts for both typical care, which follows the life course trajectory, and exceptional care, which follows a disability trajectory. We position dependent family care as based on a continuum, achieved by adapting life course theory, family adjustment to chronic illness, ecological systems theory, stigma theory and the social model of disability into a model. We explain how dependent family care occurs and what contributes to whether one is engaging in typical or exceptional care. We draw broad constructs representing predictors of different types of dependent family care. We provide specific examples to illustrate how one might test theoretical propositions, an agenda for further research and discuss implications for family–work–community research and practice.     

Independent living and community care: a disempowering framework

The British disability movement has had significant achievements in its struggle for independent living. However, the current community care framework contains many barriers to independent living. This article sets out a conceptual framework for an understanding of independent living and provides an analysis of the barriers posed by the social care system. These range from financial incentives for placing disabled people in residential care, to a failure to address needs relating to employment, parenting and leisure. Disabling attitudes held by social services professionals about 'risk' and 'capacity' are also major barriers. It is clear that, unless the legislative framework is amended to include an entitlement to independent living, disabled people will continue to be denied their full human and civil rights.     

The concept of a continuum of residence: Comparing activities of daily living among the elderly

The inadequacies and limitations of dichotomous residential comparisons (e.g. rural/urban or metropolitan/non-metropolitan), coupled with a greater awareness of the diversity that exists among small towns and rural communities, has precipitated a number of attempts to transform the concept of a continuum of residence into an operationalized set of discrete points. If characteristics and conditions of the aged are thought to be systematically associated with the underlying continuum, then it is often assumed that such factors will vary in an unbroken progression as one moves incrementally along the continuum. Using data from the National Health Interview Survey [NCHS, Kovar, M.G. (1986) Advance Data from Vital and Health Statistics, no. 115; NCHS, Kovar, M.G. and Poe, G.S. (1985) Vital and Health Statistics, series 1, no. 18], the distribution of ADL scores along a continuum of residence is explored. Zero-order and multivariate analyses did identify residential differences and patterns in the data; but, there was no support for the conjecture that ADLs would align themselves in conformity to a simple rural-urban residential continuum. The implications for future gerontological research of these results, and of multivariate approaches to determining the effects of residence on the lives of elders, are discussed.     

Workplace support, role overload, and job satisfaction of direct care workers in assisted living

This study aims to enhance our understanding of job satisfaction of direct care workers in assisted living facilities. Low job satisfaction is related to high turnover rates and lower quality of care in assisted living. We integrate two theories of job satisfaction to investigate relationships among workplace support, role overload, and job satisfaction. Data are from a survey of 984 direct care workers in 108 assisted living facilities. Results from multilevel hierarchical linear models (HLM) indicate that job satisfaction varies both within and among facilities. Job satisfaction is negatively associated with role overload, and it is positively associated with institutional support, supervisor instrumental and emotional support, and coworker emotional support. These workplace support measures and role overload are separately and independently associated with job satisfaction. Enhancing job satisfaction of assisted living direct care workers will likely require a multipronged approach that includes improving institutional, supervisor, and coworker support while simultaneously directly addressing role overload.     

Assuring the quality of long-term care insurance benefits through care management: the California partnership for long-term care

Despite recent improvements in long-term care insurance (LTCI) policies, concerns have been raised regarding just how well LTCI benefits actually meet elderly consumers' health and financial needs. In this case study, we examined the quality assurance (QA) provisions in a state-sponsored LTCI program, the California Partnership for Long-Term Care (CPLTC). CPLTC invests the primary responsibility for QA with care management networks, which assure quality services through care monitoring, quarterly service record reviews, and annual documentation of care manager clinical competence. Study findings suggest a number of limitations in existing QA policies and procedures, which can undermine the ability of care managers and other third parties to identify and rectify potential unmet needs among LTCI policyholders. These findings, while based on an intensive analysis of QA provisions in a particular, state-sponsored LTCI program, are likely to have implications for other LTCI programs and policies, most of which have less well-developed QA provisions.     

Unlicensed care homes in the United States: a clandestine sector of long-term care

Residential care facilities operating without a state license are known to house vulnerable adults. Such unlicensed care homes (UCHs) commonly operate illegally, making them difficult to investigate. We conducted an exploratory, multimethod qualitative study of UCHs, including 17 subject matter expert interviews and site visits to three states, including a total of 30 stakeholder interviews, to understand UCH operations, services provided, and residents served. Findings indicate that various vulnerable groups reside in UCHs; some UCHs offer unsafe living environments; and some residents are reportedly abused, neglected, and financially exploited. Regulations, policies, and practices that might influence UCH prevalence are discussed.     

Group long-term care insurance: decision-making factors and implications for financing long-term care

This study proposes and tests a systemic family decision-making framework to understand group long-term care insurance (LTCI) enrollment decisions. A random sample of public employees who were offered group LTCI as a workplace benefit were examined. Findings reveal very good predictive efficacy for the overall conceptual framework with a pseudo R2 value of .687, and reinforced the contributions of factors within the family system. Enrollees were more likely to have discussed the decision with others, used information sources, and had prior experience when compared to non-enrollees. Perceived health status, financial knowledge, attitudes regarding the role of private insurance, risk taking, and coverage features were additional factors related to enrollment decisions. The findings help to inform policymakers about the potential of LTCI as one strategy for financing long-term care.     

Financing reform for long-term care: strategies for public and private long-term care insurance

The way the nation provides for the financing and delivery of long-term care is badly in need of reform. The principal options for change are private insurance, altering Medicaid, and public long-term care insurance. This article uses the Brookings-ICF Long-Term Care Financing Model to evaluate each of these options in terms of affordability, distribution of benefits, and ability to reduce catastrophic out-of-pocket costs. So long as private insurance is aimed at the elderly, its market penetration and ability to finance long-term care will remain severely limited. Affordability is a major problem. Selling to younger persons could solve the affordability problem, but marketing is extremely difficult. Liberalizing Medicaid could help solve the problems of long-term care, but there is little public support for means-tested programs. Finally, universalistic public insurance programs do well in meeting the goals of long-term care reform, but all social insurance programs are expensive and seem politically infeasible in the current political environment.     

Questions I now ask: Spirituality in the liminal environment of assisted living

This article analyzes, through two case studies, how elders in a secular, urban, assisted living facility (ALF), use their spirituality to manage change and loss, and to answer questions concerning the meaning of life and death. This article asks: how does personal spirituality help elders deal with the liminal environment of assisted living in the latter stage of life?This article is based on research that explored the cultural construction of dying and death in long-term care facilities. In-depth interviews were conducted with 22 residents living in an ALF. We offer case studies concerning elders' lived experience of spirituality in order to demonstrate the significance of individual and cohort history and the elder's embeddedness in the culture of assisted living.A key finding of this paper is that elders' spirituality becomes both miniaturized and expanded in the assisted living environment. The miniaturization mirrors the diminishment of their physical world. The expansion reflects the need for a belief system expanded enough to contain the questions asked in this place, at this time of life.     

The changing world of long-term care: a state perspective

Based on data from an eight year longitudinal study of Ohio's long-term care use patterns, this paper describes the changes now being experienced by this industry. Although Ohio has been a state with a heavy reliance on institutional services, the data suggest a change in how long-term care is provided in the state. Over the past eight years, despite an increasing disabled older population, nursing home occupancy rates have fallen from 92.5% to 83.5%. At the same time, in-home service and assisted living use has increased. The paper concludes by describing how such changes are likely to impact the system of the future.     

Two lives in transition: Agency and context for assisted living residents

This research uses data on two “focal case” individuals residing in one residential care/assisted living (RC/AL) facility, collected as part of a larger ethnographic study exploring later-life transitions, including those leading to the moves into housing and care settings. In-depth examination of the 10-year transition histories of these two women highlights the major erosion of autonomy with advancing frailty, illness, and relocation into supportive housing. A second major theme is that an understanding of the contemporary events and challenges for these two individuals is substantially enhanced by nesting them within the temporal context of earlier life events, including personal relationships, social events, and preferences. Individual history, elicited from resident, family, staff and professional views, serves to contextualize current choices and reactions to key events. As researchers, adding this temporal context moves our understanding of their identities well beyond a simplistic snapshot view as “resident” in AL.     

Coming together and pulling apart: Exploring the influence of functional status on co-resident relationships in assisted living

Social relationships can have considerable influence on physical and mental well-being in later life, particularly for those in long-term care settings such as assisted living (AL). Research set in AL suggests that other residents are among the most available social contacts and that co-resident relationships can affect life satisfaction, quality of life, and well-being. Functional status is a major factor influencing relationships, yet AL research has not studied in-depth or systematically considered the role it plays in residents' relationships. This study examines the influences of physical and mental function on co-resident relationships in AL and identifies the factors shaping the influence of functional status. We present an analysis of qualitative data collected over a one-year period in two distinct AL settings. Data collection included: participant observation, informal interviews, and formal in-depth interviews with staff, residents, administrators and visitors, as well as surveys with residents. Grounded theory methods guided our data collection and analysis. Our analysis identified the core category, “coming together and pulling apart”, which signifies that functional status is multi-directional, fluid, and operates in different ways in various situations and across time. Key facility- (e.g., admission and retention practices, staff intervention) and resident-level (e.g., personal and situational characteristics) factors shape the influence of functional status on co-resident relationships. Based on our findings, we suggest strategies for promoting positive relationships among residents in AL, including the need to educate staff, families, and residents.     

The effects of organizational context on autonomy-enhancing policies in assisted living

This study examines the effects of facility size, ownership, chain membership, and residents' characteristics on autonomy-enhancing policies in assisted living. The theoretical framework for the study is based on the open systems perspective, which views organizations as being influenced by environmental context (e.g., ownership and chain membership). Data were collected from interviews with administrators of 60 facilities in Maryland. Autonomy-enhancing policies were assessed with the MEAP Policy Choice and Resident Control scales. Facility size and residents' disability were strong predictors of autonomy-enhancing policies (R² = .39, p < .001). Higher levels of policies that foster resident autonomy were associated with larger facility size (β = .54, p < .001) and lower residents' disability (β = .23, p < .05). Chain membership had an indirect influence on autonomy-enhancing via facility size and residents' disability. Chain-related facilities were larger, and their residents were less disabled. The study contributes to a better understanding of the mechanism through which organizational factors influence resident-oriented policies.     

Afraid to care; unable to care: A critical ethnography within a long-term care home

This paper describes the findings of a critical ethnographic research study conducted in an urban long-term care home. While our intention was to learn more about the culture of care, specifically as it relates to mental health care provision, the participants in the study consistently spoke with us about (what we have labeled as) a culture of compliance. In a context where new long-term care legislation is being implemented along with new, standardized resident assessment instruments, gaining a deeper understanding of the (un)intended consequences of government's efforts to ensure a high quality of care is of paramount importance. This research demonstrates how policy-driven structural mechanisms can (re)produce conditions that result in frontline staff being afraid and unable to care, and thus contributes to a better understanding of the lived experience of frontline long-term care staff who find that their caregiving responsibilities are displaced by caregiving accountabilities.     

Becoming institutional bodies: Socialization into a long-term care home

This paper reports the findings from a phenomenological study examining the lived experience of moving to a long-term care facility and the process of socialization for new residents into the nursing home culture and environment. Three residents were followed over the first six months after moving to a long-term care facility using a series of in depth interviews and participant observation with residents themselves, staff members and family members. This paper focuses on the five institutional level processes related to socialization into the long-term care environment as they were experienced by the new residents. These included: placing the body, defining the body, focusing on the body, managing the body, and relating to the body. The findings point to the importance of place in the construction of institutional bodies in the long-term care context.