Adults: Group Care
Abstract and Keywords
This entry presents information about group settings that provide residential long-term care for older adults, focusing on nursing homes and residential care/assisted living communities. It provides an overview of both settings, and describes their scope of services, funding, and clientele. The section Issues in Residential Long-Term Care addresses issues of special relevance to social workers: dementia and other psychosocial care needs; quality of life and quality of care; access to and disparities in care; end-of-life care; family involvement; and abuse and neglect. It ends with a section on the role of the social worker in residential long-term care.
Group care for older adults who require supportive services can be provided in nonresidential settings (such as adult day programs) or residential settings (including nursing homes and residential care/assisted living communities). This entry will focus on residential long-term care settings. Nursing homes are an especially important component of the long-term care system, and although only 5% of the older adult population is in a nursing home at any given time, one-half of all adults over age 65 spend at least some time there. Further highlighting their magnitude, there are approximately 17,000 nursing homes in the United States serving 1.6 million individuals. However, this is only a portion of the residential long-term care system. Residential care/assisted living settings have proliferated over the last decade, to the point that the number of beds in these residences rivals that in nursing homes. There are approximately 36,000 such communities in the United States, housing as many as 1 million older adults. While nursing homes and residential care/assisted living settings differ, both exist to address the care needs of an older population, and both confront some of the same challenges while doing so. This entry will provide an overview of these settings and some of issues with which they struggle. It will close with discussion regarding the role of social work in the field of residential long-term care for older adults.
Settings of Residential Long-Term Care
Since the inception of Medicare, nursing homes (also referred to as skilled nursing facilities) have been the predominant form of residential long-term care in the country. They provide 24-hr nursing care, supervision, help with activities of daily living, meals, and medication administration to people who cannot manage independently. They also provide rehabilitative services, including physical, occupational, and speech therapy, to assist those recovering from acute conditions such as stroke or hip fracture. Thus, the predominant model of nursing home care is medical, ordered by physicians, planned primarily by licensed nurses, and delivered by professional or paraprofessional staff—although a “culture change” movement is under way to better orient care to the psychosocial needs of these residents. The average annual cost of nursing home care is approximately $56,000 with total national expenditures reaching $78.6 billion (1998 dollars). Medicaid funds the majority of this care (40%, the equivalent of $31.4 billion in 1998), followed closely by private out-of-pocket payments (36%, $28.5 billion), and to a much less extent Medicare payments (13%; $10.4 billion).
The nursing home clientele reflects the demographics of the older population, and so the majority (almost 75%) of residents are women. The average age at admission is 84, and approximately one-half of residents are 85 years of age or older. Approximately one-third of admissions are for short-term rehabilitation after hospitalization, although those receiving rehabilitation occupy less than 10% of beds. An estimated 75% of residents require assistance in three or more activities of daily living such as bathing, dressing, eating, transferring from a bed to a chair, and using the toilet. In addition to need for medical and assistive care, there also is need for psychosocial care. One-half of new admissions have dementia (this being a primary reason for admission), as do as many as three-quarters of long-stay residents; these figures are notably higher than the 15% of community-residing older adults who have dementia. Also, almost one-half of nursing home residents have depression, which is higher than the 8–20% prevalence rate in the community. Overall, the length of time since admission among all residents is 2.5 years. Thus, there is ample time for social workers and other health care providers to develop a therapeutic relationship with most residents.
Residential Care/Assisted Living Communities
Residential care/assisted living communities became a boon industry in 1993, as the number of older adults who needed supportive care (but not medical care) increased, and advocates and businesses sought to provide housing with services that would overcome dissatisfactions with nursing home care. These settings are highly variable in terms of their structure and services, but have in common that they provide room, board, 24-hr supervision, and assistance with medications and activities of daily living. While not medical settings, most help coordinate and/or access health services, and approximately one-half have a nurse on staff. Initially, the term “assisted living” referred to a specific model of care based on principles of individuality, independence, privacy, dignity, and choice; it embraced homelikeness, and had individual sleeping spaces, full baths, kitchens, and doors that locked; and it introduced concepts such as customized care plans. Over time, the term assisted living has been used much more broadly, to refer to a diversity of facilities regulated by the states under a variety of designations including board and care, residential care, personal care, foster care, domiciliary care, and congregate care—and not all of which subscribed to the listed principles. Because of the controversy surrounding the use of the term, it is clearer to refer to all such settings as “residential care/assisted living.” Today, residential care/assisted living facilities range from private, converted houses with fewer than 10 beds, to multilevel campuses with more than 1,400 beds. Some have private apartments, whereas others have four residents per room. Rates range from less than $400 to more than $6,000 per month, with the average cost being approximately $30,000 a year. Most residents pay privately, but with the growth and impairment level of the clientele, there has been a trend toward public subsidies and by 2003, 41 states provided funding for these services. Nonetheless, private sources continue to provide the majority of payments (75%), with minor support from long-term care insurance (<2%) and managed care (< 2%). The remaining costs are covered through a combination of Medicaid waivers, state funds, and supplemental security income (SSI).
Over time, residents in residential care/assisted living communities have come to resemble nursing home residents of the past. Like nursing homes, the majority (75%) are female. Depending on the type of residence, as many as 40% of residents are impaired in performing activities of daily living, have moderate or severe dementia, or display behavioral symptoms. The exact composition of the resident profile is somewhat dependent on state regulations, however, as admission and retention criteria define the client population and the limits to which residents are allowed to age-in-place. One thing that has become certain is that residential care/assisted living has become a primary provider of residential care for older adults with cognitive impairment, with as many as 90% of the residents having some level of impairment.
Issues in Residential Long-Term Care
Nursing homes and residential care/assisted living communities are complex settings that care for a range of frail, chronically ill persons. Not surprisingly, numerous issues exist regarding the optimal provision of care in these settings. Those that will be reviewed here are especially relevant to the field of social work, and include dementia and other psychosocial care needs; quality of life and quality of care; access to and disparities in care; end-of-life care; family involvement; and abuse and neglect.
Dementia and Other Psychosocial Care Needs
In the 1990s, almost one-quarter of nursing homes responded to the preponderance of residents with dementia by developing and marketing “special dementia care” in the form of units dedicated to the care of persons with dementia; more recently, residential care/assisted living communities have followed suit. These units were thought to be a superior treatment environment because they were purported to specially select, train, and supervise their staff; provide activities designed for the cognitively impaired; involve the family in treatment; and have a physical environment designed for safety and segregation. However, these components are not always in evidence, and the provision of “special care” does not consistently relate to better resident, staff, and family outcomes. Further, the vast majority of long-term care residents with dementia are not treated in “special” units. Thus, dementia care has become the province of all long-term care providers, but most staff are not sufficiently trained in providing dementia care. Further, there is widespread evidence that care for the mental health needs of long-term care residents is lacking.
Quality of Life and Quality of Care
One of the most important changes evolving in the field of residential long-term care is the appreciation that those who live there are not merely waiting to die. Instead, they are able to experience joy, meaningful relationships, a sense of comfort, and other pleasures that together constitute quality of life. Thus, there is emerging appreciation that the quality of care should be judged by the quality of life achieved by the residents, and now all long-term care settings are being called upon to help provide meaning to residents' lives. Consequently, the quality of long-term care is improving, in part a result of federal nursing home regulations and state residential care/assisted living regulations, as well as from grassroots efforts that emphasize consumer involvement, better physical environments, and care that is person directed and focuses on caring for people and relationships, rather than on the task of care provision (known as “culture change”). In addition, emerging data indicate that overall, the quality of care does not differ in nursing homes compared to residential care/assisted living, which is a promising finding given that nursing home care is significantly more expensive.
Access to and Disparities in Care
The current trend is for long-term care in the United States to be increasingly segregated by payment status. While level of need determines eligibility for care, nursing homes primarily serve a Medicaid clientele, and residential care/assisted living facilities serve those who can pay privately. Further, even within nursing homes, quality of care indicators are poorer in homes with more Medicaid residents, and within residential care/assisted living settings, the proportion of residents who are minorities is minimal. Fortunately, such disparities in access and care are receiving attention. As a case in point, states are experimenting with creative models of financing affordable assisted living, which will increase access for those with lesser means.
With more older adults living in long-term care, more are dying there, as well. In fact, as many as two-thirds of nursing home residents die there rather than in hospitals or private homes. As of 2008, the proportion of U.S. deaths occurring in long-term care is 23%, and is expected to increase to 40% by the year 2040. One of the issues relevant to end-of-life care in long-term care is the presence and adequacy of available medical services. Physician presence is not common in either residential setting, and long-term care providers may not be sensitive to changes in resident status that suggest impending death and the need for palliative care. Similarly, when families are not present on a daily basis, it is challenging to know when to contact them so as to assure their presence at the time of death. Fortunately, these types of issues are receiving attention, and one historic limitation of end-of-life care in long-term care—insufficient use of hospice—seems to be resolving.
It is the norm, rather than the exception, that older adults who live in long-term care settings were cared for by family before their admission, and that caregiving does not end after admission. In fact, families visit residents an average of twice a week, for approximately 4 hr. They constitute an important resource to staff because they have knowledge of the resident's history, and they are important to the resident for emotional connectedness and psychosocial health. Indeed, family presence improves resident psychological and psychosocial well-being, as well as the accuracy of diagnoses and the resultant care. Also, family members are called upon to make decisions regarding care for cognitively impaired residents, and to provide continuity that may otherwise be lacking due to staff turnover. However, the value of family members as a resource in long-term care is only beginning to be realized, and family caregivers still experience stress and depression just as they do in community settings. Consequently, efforts have begun to consider how to integrate them into the fabric of long-term care provision, while not overburdening them and creating tension with staff.
Abuse and Neglect
Residents of long-term care facilities are especially vulnerable to abuse due to their physical and cognitive limitations, dependency, inability to report, and fear that if they do, their reports may result in retaliation. While there are no accurate estimates as to the prevalence of abuse in long-term care, there is evidence to suggest that it is a notable problem, and that the quality of staff–resident interactions predicts abuse. Thus, this is an area that seems ripe for social work intervention.
The Social Worker in Residential Long-Term Care
Issues related to dementia and other psychosocial care needs, quality of life and quality of care, access to and disparities in care, end-of-life care, family involvement, and abuse and neglect in long-term care are relevant to social workers to the extent that they provide services in these settings. Federal law requires that nursing homes with more than 120 beds employ a full-time social worker who has a bachelor's degree (or higher) in social work or similar qualifications. Smaller nursing homes must provide social services, but are not required to have a full-time social worker on staff. Availability is not at all assured in residential care/assisted living, where despite similar need, a social worker's presence is not required. However, some of these residents do receive social work services, including by social workers not directly employed by the setting (for example, Medicaid case managers).
The mission of social work practice in long-term care is to promote residents' social and psychological well-being while helping them retain individuality, independence, and choice. Social workers in long-term care frequently (a) facilitate the admissions process (for example, promote the resident's participation in decision making and help him/her adjust to the facility); (b) develop an individualized plan of care; (c) facilitate the social and psychological well-being of residents and their families (for example, address mental health disorders such as depression and dementia, as well as issues of a more social nature including loss of relationships, control, and identity); (d) plan discharges to ensure appropriateness and continuity of care; and (e) involve the entire facility in meeting residents' psychosocial needs through policy, training, and advocacy.
Monitoring the quality and appropriateness of psychosocial and social work services in nursing homes has become an area of increasing concern, and dialogue has begun as to the need for social work services in residential care/assisted living, as well. To promote these efforts, the National Association of Social Workers has set forth clinical indicators that relate to processes of care (that is, timely and comprehensive psychosocial assessments and resident and family involvement in care planning) and outcomes of care (that is, resident satisfaction with choice and problem resolution). Also, there is a call to action for social workers to monitor and measure psychosocial care and quality of life, including the use of applied measurement tools.
Within this context, recommended social work roles and quality indicators suggest concrete areas for action. For one, social workers could use quality of life measures to better understand areas in which an individual's quality of life may be improved, to intervene to improve quality such as by increasing the individual's sense of autonomy and control, and to monitor change over time. Also, they could work to shape facility policies in accordance with evidence that relates components of care to resident well-being. In addition, because staff training relates to both resident quality of life as well as staff feelings of competence and satisfaction, social workers could play an important role in providing needed in-service education, and intervene to reduce tensions that result in resident abuse. Further, family members may be helped to understand the types of caregiving in which they will be active, so as to ease their involvement. Given the number of older adults who now and will live in residential long-term care in the future, the social work profession has the opportunity to play an important role in promoting the well-being of millions of individuals.
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