Chapter 18. The Aging Network and the Future of Long-Term Care

SUMMARY

Federal and state governments face a significant challenge in meeting the long-term care needs of an older population that will double in size between 2000 and 2020 and continue to increase through 2050. States have made significant improvements in their long-term care systems for the elderly. However, they are still spending a significant proportion of their long-term care funds on nursing homes. Any effort to improve long-term care for the elderly qualitatively, and not just on the margins, must be focused on developing a more flexible and balanced long-term care system that is responsive to consumer choice.

The Aging Services Network is poised to play a significant role in this transformation process. The strengths of the Network include the ability to develop and manage consumer-driven community-based programs; to assess the needs and resources of individual older persons and provide cost-effective community supports; to operate within fixed, capped budgets; and to identify and maintain roles for informal caregivers. Now is the time for national aging organizations, state units on aging, and area agencies on aging to use existing opportunities to move towards the establishment of a balanced system of long-term care.     

Primary Caregivers and Chinese Elders’ Demand on Community Services

Abstract

The most influential model explaining the elderly’s service use is Andersen and Newman's model. But the applicability of the model on elders’ demand on community services has not been tested, especially in developing countries such as China. This research tested the applicability of the model by studying how primary caregiver relations to the elderly influence Chinese community-dwelling elders’ demand on community services. With a total of 2,124 respondents aged 65 and older who reported primary caregivers, six primary caregiver relations were examined: son, spouse, daughter, daughter-in-law, unmarried son and daughter, and other. Data came from the 2014 wave of the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Results indicated that: (1) Elders cared for by daughters-in-law showed a significantly stronger tendency of expecting community services than elders cared for by other caregivers among both rural and urban areas. (2) Elders were least likely to expect community services in two cases: urban elders taken care of by daughters and rural elders whose primary caregivers were unmarried sons and daughters. Since Chinese elders cared for by different caregivers tended to seek community care in different manners, future research may study how suitable community service programs can be developed to well meet the needs of various elderly groups.     

The Self-Forgiveness Process of Caregivers After the Death of Care-Receivers Diagnosed With Alzheimer's Disease

ABSTRACT

This study explores the relationship of self-forgiveness and adaptive coping, religious/spiritual practices, social support, decreased grief, and mental well-being. 133 caregivers were surveyed. Bivariate analysis and stepwise regression models revealed that decreased grief, adaptive coping, and social support were significant in explaining the variation in self-forgiveness. This is one of the first studies to address self-forgiveness as part of the grieving process of Alzheimer's caregivers. Future directions are explored supporting inclusion of self-forgiveness as an aspect of grief and adaptive coping; which is further enhanced by the level of social support experienced by the caregiver.     

Informal kin caregivers raising children left behind in rural China: Experiences' feelings' and support

The well‐being of children in informal kinship care and their caregivers is a growing concern globally. This study explored the lived experiences of 23 kin caregivers raising children left behind in rural Northeast China while their migrant parents worked and lived in cities. The findings show that the expected authority and responsibility caregivers carry sometimes conflict with their social role of being children's grandparents. Caregivers' feelings about and understandings of these roles are shaped through their social interactions in local communities. In view of their situation and caregivers' self‐conscious attitudes towards utilizing local resources' future formal service provision and social support should take caregivers' viewpoints into account. These views are embedded in and shaped by their rural living context and relationships with community members who influence caregivers' perceptions and child rearing practices.     

The Impact of Religiousness,Spirituality, and Social Support on Psychological Well-Being Among Older Adults in Rural Areas

Summary

This paper presents the results of a study on the impact of spirituality, religiousness, and social support on the psychological well-being among rural elderly. With a rural community sample of 215 older adults, hierarchical regression analyses found significant associations between dimensions of spirituality/religiousness, social support, and psychological well-being, with spirituality/religiousness inversely related to depression and social support, positively related to life satisfaction. Findings of this study suggest that practitioners need to develop programs or services that are congruent with religious/spiritual beliefs and practices in order to better enhance the psychosocial well-being and improve the quality of life among older persons in rural areas.     

Living with and Caring for Older Family Members

Abstract

Using the strengths-based Caregiver Well-Being Scale, this research provides social workers with strategies for assessing and promoting caregiver well-being. One hundred eighteen family caregivers (64 spouse and 54 adult child caregivers) are used to examine caregiver relationship to the care-recipient and 138 caregivers are included in the analyses for coresidential arrangement with the care-recipient. Predictors of well-being are highlighted for each group. Caregiver competence and depression predict well-being for spouse, adult child and non-co-resident caregivers. Depression is the only predictor for co-resident caregivers. Using the activities of living sub-scale, depression predicts wellbeing for all groups. Additionally, caregiver strain relates to spouse wellbeing. Implications for social work practice with family caregivers are highlighted.     

Long-Term Care of Older Adults in Malta: Influencing Factors and Their Social Impacts Amid The International Financial Crisis

ABSTRACT

This article explores recent changes in long-term care (LTC) for older persons in Malta, resulting from restructuring or other contextual factors related to the international financial crisis. The ageing population continues to grow, while traditional ways of providing care for the ageing population are progressively dwindling. Waiting lists for residential care have grown longer, although public-private partnerships have served to shorten these lists to some degree. Community care services are not keeping pace with need, and the frail elderly wishing to remain in their own homes often cannot do so without significant assistance from other sources.

Service recipients fall into four groups: those affording private residential care; those granted a government-subsidized residential bed; those cared for at home by relatives; and those similarly cared for by nonfamily live-in caregivers with (or without) input from family members. Existent data are reviewed and analyzed along with a focus group of 30 stakeholders to explore this topic further. Future recommendations are made and consequences are explored as caregiving options move away from the responsibility of the traditional family system toward greater pressure on state-provided care, use of expensive private care, and waiting lists to secure services.     

Children with an imprisoned parent: children's and caregivers' narratives

Previous studies have found that children may experience adverse effects from parental imprisonment. However, little research concerning this issue from children's perspectives has been undertaken in Hong Kong. In order to fill the knowledge gap, this study aims at exploring the challenges and resilience of children with a parent in prison. Nine children aged between 9 and 11 years with a parent in prison, and their caregivers, were interviewed. Their life experience and feelings during parental imprisonment were explored. The caregivers were asked about changes in the children's behaviour and resilience in the children. Children reported that they experienced academic stress and psychological distress, including sadness and problems in having to conceal their parent's imprisonment. They benefited through positive thinking, holding religious beliefs and talking to trusted persons. For caregivers, children's conduct problems, psychological distress and suppression of feelings were reported as the challenges children faced, while object hitting for venting emotion, religious beliefs and engagement in activities were reported as helping children to cope. The article concludes by making a number of recommendations concerning the provision of services, including the establishment of mutual-aid self-help groups, mentoring programmes and programmes promoting the importance of positive thinking for the children, and trainings for caregivers on understanding children's needs, as well as public education on the social stigma of parental imprisonment.     

Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n?=?77), individuals caring for an in-law (n?=?26) and a comparison group of noncaregivers (n?=?1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.     

Experiential design and religious publicity at D.C.’s Museum of the Bible

ABSTRACT

This article examines the sensory dimension of religious publicity, focused on the case of an evangelical museum in the United States. Washington D.C.’s Museum of the Bible (MOTB) was envisioned and funded primarily by conservative Protestants, and is a revealing case of religion in public life because most of the creative labor of design was conceived and executed by secular firms who do not typically work for faith-based clients. The professional expertise of these firms, “experiential design,” informs a sea change in contemporary museology and the expansion of the experience economy in late modernity. Ultimately, I argue that MOTB’s engagement with experiential design indexes the power of entertainment in late modern life, as the sensory repertoire at play operates with largely unquestioned legitimacy and presumed efficacy. By mobilizing the cultural capital of design, an evangelical museum makes a claim for diverse audiences in a deeply public setting.     

Social assistance programs during the COVID-19 pandemic in Bangladesh: Does faith-based approach matters?

This paper aimed to examine the role of faith-based organizations (FBOs) in the distribution of social assistance (SA) during the COVID-19 pandemic in Bangladesh. The paper adopts a qualitative case-study approach to explore the best practices in the distribution of SA by five (5) organizations including FBOs, governmental organizations (GOs), Non-governmental organizations (NGOs), political groups, and private voluntary groups. In this study, 14 beneficiaries of SA were selected by stratified proportionate random sampling method, and five (5) key personnel were selected purposively based on their experiences in the management of SA distribution. The study found that “no-move, no touch” approach followed by FBOs is more likely to establish human rights and social justice and reduce the transmission of diseases. In contrast to the modern idea, which undermines the faith-based charity, the study proved that faith-based charity is gaining attraction as an effective approach combating global pandemic. The findings of this paper will be useful for policymakers, voluntary service workers, GO, and NGO workers to ensure the distribution of SA in a more productive and disciplined way during and after an emergency like the COVID-19 pandemic.     

Adolescent Religiosity and School Contexts*

Objectives. Schools serve as the primary social organizations for adolescents, structuring their lives and conveying a variety of skills, norms, and values, but relatively little is known about how schools influence the development of religious belief, attitudes, and behavior during adolescence. We explore how schools' religious norms, coupled with adolescents' pursuit of social status through conformity, affect public and private religiosity. Methods. Employing data from the National Longitudinal Study of Adolescent Health (Add Health), we use multilevel modeling to examine the impact of school context on adolescents' public and private religiosity. Results. We find that school norms are influential in shaping both public religious expressions and private devotional activities, but pursuit of social status is a motivation for change across religious contexts only of public religious activity. The effect of social status as a motivator of religious change was moderated by the strength of the adolescent's identification with the school, especially for private religiosity. Conclusions. Schools play a key role in the social development of adolescents, and students' religious beliefs and behaviors are influenced systematically and observably by the type of religious climate within the school.     

Mosaic of Difference

Summary

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

ABSTRACT

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a ‘live discharge’ from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.     

Social Workers' Use of Spiritual Practices in Palliative Care

Abstract

Numerous studies have examined client use of spiritual and/or religious practices to cope with illness and adversity. This study explores social workers' use of spiritual practices as reflected in their work with palliative care clients. Survey results (n = 327) indicated significant relationships of spiritual practices such as yoga, prayer and meditation to working with palliative care clients. The total number of these approaches is predicted by factors such as theoretical orientation and the social workers' own struggles with palliative care and other issues. Our study supports the need for additional investigation of spiritual issues in practice.     

Informal Caregivers of Institutionalized Dementia Residents

When older adults are placed in nursing homes, care- giving responsibility continues, despite long held beliefs to the con- trary. Although the American family is in transition, bonds of care- giving and of filial responsibility are strong and persist into old age. Knowledge about characteristics of caregivers who have actually placed their relative in a nursing home is limited. The purpose of this study is to examine whether demographic and facility-related char- acteristics as well as knowledge about dementia and participation in support groups and workshops are signif~cant predictors of burden in caregivers of institutionalized dementia residents. Sixty-seven per- cent of caregivers of residents in a dementia unit in a nursing home participated in the study. Overall, the regression explained 68% of the variance in burden and was highly simcant statistically. In- formation gained from this study will assist social workers in mak- ing referrals to nursing homes or in direct practice with cognitively impaired nursing home residents and their families.     

Caregivers' Coping and Self-Forgiveness After the Death of a Care-Receiver

ABSTRACT

This study explores the relationship of self-forgiveness with adaptive coping and nonadaptive coping. This study addresses self-forgiveness as part of the grieving process of Alzheimer's disease caregivers. One hundred and thirty-three caregivers who had recently lost a loved one were surveyed. The bivariate analysis revealed a significant relationship between self-forgiveness and adaptive coping and non-adaptive coping. Furthermore, stepwise regression models computed for the study variables revealed that adaptive coping and non-adaptive coping were statistically significant in explaining the variation in self-forgiveness. Based on these findings, future directions in research are explored.     

‘We’re Civil Servants’: The Status of Trauma-Informed Care in the Community

ABSTRACT

Trauma-informed care (TIC) in social service organizations means that the organizations operate with the understanding that everyone involved has possibly experienced trauma in their lifetime. This qualitative study examined local service organizations’ usage of the 5 main principles of TIC: safety, trustworthiness, collaboration, empowerment, and choice (as developed by Fallot & Harris, 2006). Ten focus groups (n = 69) and 6 individual interviews (n = 6) with employees from administration through management were interviewed such that almost all facets of each agency were represented. The participants were asked about their agencies’ policies and practices for utilizing the 5 principles of TIC. The results suggest that the vast majority of organizations in this study implemented many of the principles of TIC with clients, though they had not labeled their practices as “trauma-informed.” However, although clients were receiving TIC, some of the principles were neglected as they pertain to staff, such as choice and empowerment. The findings of this study suggest that agencies are unaware of the relevance of TIC as it relates to staff. It is recommended that future research examine whether the use of TIC in agencies prevents “burnout,” high turnover rates, and vicarious traumatization of staff.