Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

Blessed assurance: The role of religion and spirituality in Alzheimer's disease caregiving and other significant life events

Increasing attention in the scientific literature is being given to the relationships among religion, spirituality, and overall well-being. Moreover, research has repeatedly identified religion and spirituality as significant coping resources throughout the life course. For this study, a group of 20 Catholic and Protestant older adults were interviewed; half were caregivers of a spouse with Alzheimer's disease and half were noncaregivers. The informants were asked about their views on religion, spirituality, and how they integrated their faith into their lives. Qualitative analysis identified several themes reinforcing previous work that has shown religion and spirituality are important dimensions to the human experience. All of the informants had integrated religious and spiritual beliefs and practices into their lives to help make sense out of stressful situations. The findings underscore the need for further scientific inquiry that examines how religion and spirituality promote healthy adaptation to significant life events.     

“Ours is the Strangest Situation,Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.     

Religion and Spirituality in Social Work Practice with Children and Adolescents: A Survey of Canadian Practitioners

Empirical evidence about the relevance of religion/spirituality for children and adolescents contrasts with the limited number of studies inquiring about the role of religion/spirituality when working with this population. In response to this lack of knowledge, this study explored the professional attitudes, experiences, and practice behaviors of social workers and social service workers working with youth and determined the predictive factors for using spiritually-derived interventions. A cross-sectional survey design, with proportionate stratified sampling, was used to gather data from 307 Canadian social workers and social service workers working with youth in Ontario (response rate was 40%, with 5.06% margin of error). Respondents reported favorable views toward the role of religion/spirituality in social work practice, in general. They also reported positive attitudes about the relevancy of religion/spirituality for this population and somewhat frequent encounters with religious/spiritual abuse and neglect. They used a wide variety of spiritually-derived interventions; however, over two-thirds (69%) reported their formal education “never” or “rarely” included content on the topic. Barriers to using spiritually-derived interventions included: lack of knowledge/experience, concern about presenting one's own bias, disapproval from caregivers, and lack of agency/supervisor support. Multiple regression analysis revealed two assessment variables, two attitudinal variables, one education/training variable, and one personal religious/spiritual variable predictive of the use of spiritually-derived interventions, accounting for 55% of the variance. Findings suggest a need for emphasizing spiritually-sensitive practice guidelines and for social work education and continuing education to include content about religious/spiritual diversity as well as content about spiritual development that includes spirituality in childhood.     

In sickness and in health: A qualitative study of elderly men who care for wives with dementia

It is estimated that approximately 1,000,000 elderly men care for spouses with Alzheimer's disease or other forms of cognitive impairment, yet we have only a limited understanding of their work, and central questions arise. What do men caregivers do, and what meanings do they ascribe to their work? What are their distinctive strengths and vulnerabilities, and what can we learn about men and caregiving from their stories? This qualitative study was based on in-depth, open-ended interviews with 14 elderly men who are primary caregivers to wives with dementia. All interviews were taped, transcribed, and manually coded. The resulting information then underwent analysis from which three major themes emerged: feelings of isolation and invisibility of their care work, a style of caregiving that jointly utilizes management and nurturing, and feelings of commitment, responsibility, and devotion.     

Factors Associated With Caregivers’ Use of Support Services and Caregivers’ Nonuse of Services Sought

Informal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.     

Maximizing Content on Elders with Dementia While Teaching Multicultural Diversity

This article focuses on African American, American Indian/Native American, Asian/Pacific Islander American, and Hispanic/Latino American elders and caregivers who are affected by Alzheimer's disease and other types of dementia. Three specific areas are considered for each of these ethno-cultural groups: (a) diverse perceptions of Alzheimer's disease and other types of dementia; (b) barriers to service utilization; and (c) caregiving responsibilities. Finally, suggestions are offered for the use of this information in the classroom, which may better prepare future practitioners for competent practice with minority elders with Alzheimer's disease and other forms of dementia.     

Spirituality,Religion, and Social Work

Abstract

Social work scholars and practitioners have approached the question of how to integrate religion and/or spirituality into their profession in one of four typical ways: (1) resistance or avoidance; (2) an overly-generalized syncretism; (3) radical separation of the terms spirituality and religion; or (4) a genuinely interdisciplinary conversation between the disciplines of social work and religious studies. This latter approach not only identifies social work's conflictual founding legacy, but also recognizes broader contemporary intellectual traditions which do not easily separate “religion” from “spirituality.” Such awareness and common grounding allow social work to more substantively and creatively partake in cross-disciplinary research and discussion.     

The genetic connections of Alzheimer's disease: An emerging source of caregiver stress

The purpose of this study was to expand and refine current theoretical conceptualization of dementia caregiving by identifying and analyzing new potential sources of stress. A qualitative analysis of unsolicited letters (N=51) written by family caregivers of persons diagnosed with Alzheimer's disease (AD) was conducted. Content analysis of the data confirmed that providing care for persons diagnosed with AD could impart emotional, physiological, and financial stress on caregivers. The data also revealed an emerging source of stress for family caregivers—fears and uncertainties regarding possible genetic connections between family caregivers and relatives suffering from AD. These results strongly suggest that concerns with genetic connections should be included in theoretical models of stress and dementia caregiving. Implications include the need for increased dissemination of information regarding genetic connections and AD, as well as increased support for family members if and when genetic connections are discovered.     

Elder abuse: factors related to perceptions of severity and likelihood of reporting

This study examined factors that affect assessments of abuse as depicted in scenarios in which a caregiving daughter abuses her elderly mother through over-medication. College students (N = 239) read scenarios that varied in terms of the past quality of the caregiver/elder relationship and whether or not the elder adult was depicted as suffering from dementia. The role of the participants' own family caregiving experiences also was explored. Results from a factorial ANOVA showed that individuals who perceived the relationship as difficult and whose parents had served as caregivers rated the behavior in the scenario as more abusive and were more willing to notify authorities than participants in other conditions. Results are discussed with a focus on educating families and those working with elderly populations.     

Social Workers' Personal Spiritual Characteristics and Their Conceptualizations of Spirituality and Religion

Abstract

Do social workers' personal spiritual characteristics affect their conceptualizations of spirituality and religion? In light of growing professional interest in spirituality and religion, we attempt to answer this question using a mixed methods approach in conjunction with a nationally representative sample of NASW-affiliated graduate students (N = 303). The results suggest that respondents' faith tradition, orthodoxy, and degree of spiritual motivation have a relatively minor effect upon how they defined (1) spirituality, (2) religion, and (3) their understanding of the relationship between spirituality and religion. We conclude by discussing the implications of the findings and suggesting avenues for further research.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Grandparents,kinship ties,and belonging after migration: the perspective of second‐generation grandchildren

In this article, I investigate the roles of grandparents for second‐generation immigrants who live with their parents in a different country from their grandparents. I draw on in‐depth interviews with second‐generation Vietnamese immigrants living in the Czech Republic, where they are very often raised by Czech caregivers. The carers and the children are joined through the process of caregiving and become grandmothers and grandchildren to each other. The analysis focuses on how the interviewees make sense of, interpret, and understand their roles as grandchildren vis‐à‐vis their Czech and Vietnamese grandmothers. It shows how, after migration, the kinship ties are performed, negotiated, and reproduced on a micro level of everyday life, with tasks of caring, homeland visits, and a transnational/face‐to‐face maintenance of intimacy. The article concludes that grandparents play an important role in the grandchildren's sense of belonging both to their family kin and to the homeland.     

A Comparative International Analysis of Religion and Spirituality in Social Work: A Survey of UK and US Social Workers

As service populations have changed, the social work profession in the UK and the US has attempted to respond to the needs of diverse cultures, which often include issues of religion and spirituality. This can be problematic, however, due to the extrication of religious and spiritual concerns from the public social services that resulted from the process of secularization. Members of the British Association of Social Workers (BASW) and the National Association of Social Workers (NASW) in the US were sampled to explore the attitudes and perceptions of social workers regarding the placement of religion and spirituality in practice and education. In general, US social workers in this sample were more accepting of religion and spirituality than their UK counterparts, even among those respondents who expressed non‐religious world views (e.g. atheism). A majority of the respondents in the UK (76%) and the US (73%) indicated that their training programs lacked content on religion and spirituality. In the UK, 57% of the respondents believed that social workers should increase their knowledge on spirituality, compared with 90% of the US respondents. The lower level of acceptance of religion and spirituality among UK social workers may be related to higher levels of secularism in UK society.     

Factors Associated with Depressive Symptoms Among Latino Family Dementia Caregivers

ABSTRACT

Caregiving to a person affected with an irreversible, late onset dementia can be an arduous challenge. Utilizing Pearlin and colleagues' (1990) and Lawton and colleagues' (1989; 1991) stress process model of caregiving, the factors associated with depressive symptoms among Latino¹ family dementia caregivers were examined. Problematic behavior of the dementia-affected person was found to be the most important factor associated with depressive symptoms, followed by poor self-reported health of the caregiver. Human service providers are advised to include depression screening tools at the time of assessment of Latino caregivers and to offer behavioral management interventions and self-care strategies.     

SPIRITUALITY AND RELIGION,EMOTIONAL COPING,AND CRIMINAL DESISTANCE: A QUALITATIVE STUDY OF MEN UNDERGOING CHANGE

Retrospective narratives of change consistently emphasize the importance of religious devotion and spirituality in initiating sustained behavioral change, but little is known about the process by which religion and spirituality promote desistance from crime. The current project is designed to add to the knowledge of the relationship between religion/spirituality and behavioral change by systematically investigating the ways that men residing in a halfway house define the role of religion/spirituality as an emotion-coping mechanism in their desistance efforts. The qualitative data reveal that religion/spirituality is primarily used by these men currently undergoing behavioral change as a form of emotional comfort, a distraction from current stressors, and as factor demarcating the transition from deviance to a more conventional life. Suggestions for religious programming designed to stimulate behavioral changes are discussed.     

Spousal motivations of care for demented older adults: A cross-cultural comparison of Greek and American female caregivers

Purpose of the study: This study examines motivations for caregiving in American and Greek female spousal caregivers (FSCGs), and identifies cross-culturally equivalent and culturally specific types of motivations for care of a demented spouse. Design and Methods: Thirty American women and 44 Greek women who were caring for their demented husbands were surveyed about their motivations for caregiving. Results: Greek and American FSCGs were dissimilar in the extent to which they reported being motivated by a desire to maintain family harmony. Greek and American caregivers also differed in how often they cited financial reasons, wanting to please their spouse, being against institutionalization, and giving the best care as motivations for care. Implications: Culturally related differences in caregiving motivations may translate into differences in the extent to which motivations result in adaptive or maladaptive outcome for the caregiver and the care recipient.     

Upping the ante: relative caregivers' perceptions of changes in child welfare policies

Thirty-five caregivers of related children who were in the custody of the child welfare system were interviewed individually or in focus groups as the state child welfare system implemented new federal and state policies encouraging these caregivers to adopt or assume guardianship of the children in their care. Interviews were transcribed and analyzed using qualitative methods. Issues of concern included emergency entrance into caregiving; the simultaneous satisfaction and burden of caregiving; obstacles to caregiving, adoption, or guardianship; complex changes in family dynamics following placement of children; sources of support; and caution regarding adoption or guardianship. The caregivers also offered recommendations for the child welfare system. Policy, practice, and research implications are discussed.