Mental Illness in Assisted Living: Challenges for Quality of Life and Care

ABSTRACT

An unknown number of mentally ill elders in the United States receive care in assisted living, along with persons facing physical or cognitive challenges. While dementia is familiar in assisted living, our data indicate that neither staff nor residents are prepared to work or live with the mentally ill. Challenges are created for professionals, since these residents bring diverse needs. Daily interresident interactions are also disrupted or stressful. Qualitative data describe the impacts on quality of resident life as well as care and management dilemmas identified within five assisted-living settings having varying presence of mental illness among residents.     

Opting out while fitting in: How residents make sense of assisted living and cope with community life

This paper explores how assisted living residents construct personal understandings of congregate settings through the stories they tell. Using the narratives of Dorothy and Estelle, two 91-year-old participants, we examine how linkages between past experiences and present conditions enable residents to make sense of assisted living and cope with membership in a community comprised of diverse interests, backgrounds, and impairments. Our narrative analysis focuses on how individuals strive for continuity or new meaning in the face of chaos or disruption. Both participants characterize life in the facility in terms of prior personal and professional experiences that then inform their current behavior and feelings toward fellow residents. Although they profess to have little in common with these residents, both constitute assisted living in ways that enable them to enjoy their lives within the facility. Implications for studies using narrative analysis to examine transition into and satisfaction with congregate living are examined.     

Social Relationships of African American and Hispanic Older Assisted Living Residents: Exploring the Role of Race and Ethnicity

African American and Hispanic older adults are underrepresented in assisted living communities, so little is known about how they experience social relationships in these settings. The purpose of the study was to explore resident-to-resident and resident-to-staff relationships experienced and perceived by African American and Hispanic older residents in assisted living settings. In-depth interviews with 15 African American and 15 Hispanic older adults were conducted in seven assisted living communities in Central Florida. Three salient themes emerged using a grounded theory approach: formation of relationships: emotional vs. instrumental support; language as a facilitator or barrier; and avoidance of inter-racial relationships. Implications for providing culturally competent services in assisted living communities with diverse populations are discussed.     

Activity Engagement in Residential Care Settings: Findings from the National Survey of Residential Care Facilities

Assisted living and similar residential care is an important source of care for elders, including those with dementia. Meaningful activities may help residents maintain function, improve self-esteem, and enhance quality of life. Using data from the 2010 National Survey of Residential Care Facilities, this study identifies the extent of resident engagement in different types of activities; examines the extent to which cognitive status, other resident characteristics, and residential care community characteristics relate to activity engagement; and, among cognitively impaired residents, assesses whether being in dementia-specific settings is associated with activity engagement. Compared with persons without cognitive impairment, those with severe cognitive impairment are less likely to go on outings (79% versus 36%) and talk with family and friends (85% versus 72%). Residents with mild to severe cognitive impairment have higher participation in leisure activities than other residents if they live in dementia-specific settings (73% higher) than those who do not.     

Mom and Pop Versus the Big Boys: Adult Family Homes as Providers of Medicaid-Funded Residential Care

This paper compares assisted living apartments (ALs), adult residential care facilities (ARCs), and small adult family homes (AFHs) for Medicaid residents in Washington State, with particular emphasis on the settings, staffing, services, and policies of AFHs. We targeted for enrollment all residents entering an AFH, ARC, or AL setting on Medicaid/state funding in a three-county area of Washington State. We obtained information on 199 settings, interviewing administrative and direct care providers. AFHs are smaller than ARCs and ALs and less likely to be part of a chain, with no significant difference in staffing ratios of registered nurses and licensed practical nurses. Sixty-four percent of AFH residents were receiving public funds compared to 32% of AL residents. AFHs report admitting residents with more activities of daily living needs, health conditions, and behavior problems. They are less likely to have autonomy-related policies, and they provide more services and fewer activities. While attention should continue to be paid to staff supports, policy and practice should support the continued role of AFHs, which are of special interest because of their potential to provide more homelike, less costly care but with possible trade-offs compared to larger facilities.     

The application of PERT in evaluation of human service programs

In this study a strategy well known to industry. Project Evaluation and Review Technique (PERT), was used to evaluate the community placement procedures in one institution for retarded. Case file review of two samples of residents was used to develop PERT networks showing movements between various living and vocational training settings. Analysis of these networks provided data and pinpointed needed procedural changes to meet the placement objective. The large number of recommendations derived from PERT and supplemental data provided evidence that PERT can be a valuable evaluation package component in institutions for the retarded. Evaluation applications in other human service systems were suggested.     

Organizational networks of collaboration for community‐based living

This exploratory study of the Texas Community Awareness and Relocation Services (CARS) Project examines organizational networks of collaboration for community‐based living. A high degree of collaboration in these networks is needed to help nursing facility residents negotiate the complex process of moving to community‐based settings. Social network analysis reveals considerable variations in local organizational networks of collaboration among lead nonprofit providers before and after implementation of the CARS Project in five test sites. These variations probably affected their collaborative capacity of each site and, ultimately, the project's outcomes.     

Choosing Privacy over Interaction: Restructuring Expectations and Interpretations of Community Integration in Canadian Small-House Long-Term Care Settings

In Nova Scotia, Canada, the small-house model of care has been introduced as an alternative to institutional care settings, and the province has funded and built 11 new long-term care (LTC) communities in the small-house model. Each of the new facilities was built with multiple cottages housing 12 to 15 residents; each cottage features private bedrooms and a residentially scaled kitchen and dining area. Through smaller numbers of residents living in home areas, the goal of the Provincial Department of Health was to encourage relationship building, as well as to provide opportunities for autonomy and choice in resident daily living. A qualitative case study was conducted in one of these small-house communities, focusing on the model's impact on resident interaction and community integration. Thematic analysis revealed that while resident social patterns were directly impacted by the physical environment and culture of care in the new model, interpretations of these patterns by staff and family members were influenced by preexisting expectations of community integration rooted in institutional care models of the past.     

Testing of the Function Focused Environment Assessment and the Function Focused Policy Assessment in Assisted Living

This study tested two new instruments, the Function Focused Environment Assessment (FF-EA) and the Function Focused Policy Assessment (FF-PA). The measures were developed for clinical evaluation of assisted living (AL) settings to help optimize function and physical activity among residents. In total, 106 AL settings and 242 residents were included. There was evidence of item reliability (0.92) and interrater reliability (kappa =0.40, p = .015; agreement 85%) of FF-EA and item reliability (0.89) and interrater reliability (kappa =0.48, p = .001, agreement 82%) of the FF-PA, and support for validity of both measures based on INFIT and OUTFIT statistics and hypothesis testing.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Communities within communities: Changing ‘residential’ areas at Cultus Lake,British Columbia

Research focusing upon rural Canada continues to highlight the complex outcomes arising from rural-urban interactions within particular geographic settings. In the ‘city's countryside’, amenity landscapes located near the urban fringe are developed as the domain of vacation- and recreation-seeking urban residents. Yet, these recreation amenity sites are also set within an existing rural landscape. The land uses and social patterns found within this setting represent an outcome of the interactions between these competing landscapes. This paper examines residential change within the rural-recreational areas around Cultus Lake, British Columbia. Comparison of the local population to those living permanently within the cottaging areas is made across selected socio-economic characteristics and household activity patterns. These comparisons are extended to the group level by examining social and spatial constructions of local community ‘institutions’. Together, these comparisons suggest a ‘shared but separate’ geographic space.     

Identifying the barriers and challenges to voting by residents in nursing homes and assisted living settings

To ascertain the need for and to inform development of guidelines for voting in long-term care settings, we conducted a telephone survey of Philadelphia nursing (n = 31) and assisted living (n = 20) settings following the 2003 election. Substantial variability existed in procedures used for registration and voting, in staff attitudes, and in the estimated proportion of residents who voted (29%+/-28, range 0-100%). Residents who wanted to vote were unable to do so at nearly one-third of sites, largely due to procedural problems. Nearly two-thirds of facilities indicated they assessed residents' voting capacity before the election. However, methods differed and may have disenfranchised residents who were actually competent to vote. Current procedures in many facilities fail to protect voting rights. These data suggest that rights might be better protected if election officials took charge of registration, filing absentee ballot requests, ballot completion, and trained LTC facility staff on voters' rights and reasonable accommodations.     

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.     

Moving On From Supportive Housing (MOSH): Development and evaluation of a transitional skill-building curriculum for providers helping residents exit homeless services

This article describes the development and evaluation of MOSH (Moving On From Supportive Housing), a transitional skill-building curriculum for providers helping residents exit homeless services to mainstream housing without embedded supports. In this evaluation, we assess the feasibility, acceptability, fit, and potential efficacy of the MOSH curriculum to improve proximal provider-level outcomes, including self-efficacy to provide MOSH-related independent living skills and supports. Homeless-services providers (N = 49) from a range of programs and settings participated in the training. Findings from focus groups and pre- and posttest surveys indicate high levels of overall satisfaction with the training. The majority of trainees perceived the training to be useful to their work and potentially useful for service recipients, felt the training would fit well within their existing day-to-day work, and said they were very likely to use MOSH skills in such work. Statistically significant improvements in self-efficacy regarding all skills but one were also found. MOSH holds promise as an intervention that can enhance provider practice and promotion of independent living skills in homeless services. Although these initial findings on MOSH are encouraging, further research will be needed to evaluate provider knowledge gains and effective use of these skills in practice.     

Autonomy in Assisted Living: Employees’ Perspectives

This focused ethnography explores how employees in assisted living facilities give meaning to the term autonomy, a core value in the mission of assisted living facilities. In-depth interviews were conducted with managerial and front line staff in two assisted living facilities to understand their interpretation of the concept of autonomy and how they felt they enhance the autonomy of the residents. Four interrelated themes capturing the meaning of autonomy emerged from analysis of the interview data: (1) autonomy is synonymous with functional independence, (2) expectations of residents of assisted living are different from residents of nursing homes, (3) rehabilitation is a goal of assisted living, and (4) a tendency to intervene in the best interests of the residents. The implications of the findings are discussed in terms of their potential effect on residents.     

Efficacy of Work-Based Training for Direct Care Workers in Assisted Living

This article reports on the efficacy of a work-based learning program for direct care workers in assisted living. The program goal was to improve skills and facilitate career development. The training program had positive impacts at both individual and organizational levels. Survey data found that workers felt more competent and self-confident about their abilities to work with residents. Furthermore, increasing satisfaction with the training program over time led to greater job satisfaction and a desire for additional education. Organizations have better outcomes when workers are well trained, feel empowered, and are satisfied with their work. Policy implications for assisted living settings and meeting the growing demand for a competent direct care workforce are discussed.     

How Theory and Research Inform Citizen Participation in Poor Communities: The Ecological Perspective and Theories on Self- and Collective Efficacy and Sense of Community

The engagement of residents in poor, disadvantaged communities has been a focus of social work practice since the early part of the twentieth century. In the person:environment configuration, a renewed appreciation is building for community-level factors in human behavior and functioning. Poor neighborhoods are transactional settings that can negatively impact human behavior and development. However, active citizen participation can positively impact neighborhoods, including strengthening residents' individual and collective capacities and relationships. This article uses the ecological perspective to examine the neighborhood as a transactional setting that influences individual and collective behavior and outcomes and citizen participation as vehicle for improving outcomes for residents living in poor communities. The article also discusses theory and research on self- and collective efficacy and sense of community to understand the motivation for and benefits of citizen participation. Implications for social work research and practice are discussed.     

Six for Lunch: A Dining Option for Residents with Dementia in a Special Care Unit

Recent research has focused on the design of special care units for residents with dementia, often identifying the social benefits of residentially scaled kitchen and dining areas. This qualitative case study examines how the environmental design features of two dining settings in one special care unit impact residents’ patterns of socialization and interaction at meal times. The first setting is a central dining room for 50 to 60 residents. The second setting is a small office with a residentially scaled kitchen, where once a week, the activity director invites six residents for lunch once a week. Within an ecological theoretical framework, the study findings reveal that, while mealtimes in both settings are highly anticipated, it is the complex relational ties between the operational, managerial, and environmental features of the settings which determine residents’ social interaction and satisfaction with their mealtime experiences.     

Food Waste and Quality of Life in Elderly Populations Living in Retirement Living Communities

Food waste is an increasingly important issue in all food-service establishments, including retirement living communities. With residents of these communities having faced food insecurity as children and young adults, they have unique and very strong feelings regarding this issue. We interviewed 16 Canadian residents and used manifest content analysis to gain an understanding of how their experiences, behaviors, and feelings toward food waste may impact their quality of life. The results of this study may have implications for how retirement living communities approach their food-service operations.     

Mental disorders among non-elderly nursing home residents

Many Medicaid beneficiaries aged 22 to 64 with serious mental illness may be admitted to nursing facilities rather than psychiatric facilities as a result of Medicaid policies prohibiting coverage of inpatient psychiatric care in institutions of mental disease while requiring states to cover nursing facility care. Using nationwide Medicaid Analytic Extract claims from 2002, we found that nearly 16% of nursing home residents aged 22 to 64 had a diagnosed mental disorder, while 45.5% received antipsychotic medication, but these rates varied widely across states. Further research is necessary to determine whether, among the nation's youngest nursing home residents, care in nursing homes is potentially substituting for care in institutions for mental disease or community-based settings.