Living with Dementia: Lay Definitions of Alzheimer's Disease among African American Caregivers and Sufferers

While the medical world aggressively pursues scientific knowledge about Alzheimer's disease, sufferers and caregivers live with this ailment, not as patients, but as people going about their lives, needing and providing care. This article reports explanations of Alzheimer's from the perspectives of African American family caregivers and sufferers. Data were collected from thirty‐six families using participant observation and focus group interviews. Although caregivers sought and used medical expertise, their explanations of Alzheimer's were not only nonmedical, but not necessarily explanations of illness per se. Alzheimer's was presented instead as a way of being, predominantly characterized by views of the sufferer as childlike and by issues of continuity/discontinuity, though some saw Alzheimer's as part of a larger picture.     

Three phase development of caring capacity in primary caregivers for relatives with Alzheimer's disease

Multiple, open-ended, qualitative interviews were conducted with 16 primary caregivers for relatives with Alzheimer's disease in order to describe caregiver self-development through the caregiving journey. Caregiver change is traced up to five years after the care recipient's death. Caregivers' capacity for caring was found to be at the core and to unfold in three phases: development of caring capacity for the care recipient, development of capacity for self-care, and development of caring capacity for others. The four elements of caring capacity (perception, motivation, competency, action) are expressed in relation to the care recipient, to the self, and to less familiar “others”. The caregiving experience tends also to prompt caregivers to become caregivers for humanity and to expand their sense of self. This may lead to the development of the altruistic self, which incorporates both a selfless concern for the welfare of others and a self-directed concern for one's own welfare.     

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.     

Joy and sorrow: Explaining Chinese caregivers' reward and stress

This study explores positive and negative aspects of Chinese caregivers' experience, specifically, caregiving social reward as well as depression. Based on data collected in 1997–1999 with 110 caregivers who were then taking care of physically dependent parents or parents-in-law, this study finds that caregivers caring for elder parents with pensions reported higher levels of social rewards. Caregivers who were unemployed and had poor self-rated health reported higher levels of depression. Cultural values were found to have two dimensions of effect on caregiving experiences: while caregivers' report of strong filial responsibility was positively related to caregivers' depression scores, caregivers' report of social pressure was negatively related to their report of social reward. The author argues that the dual effect of family economic conditions and caregivers' cultural values calls for greater attention to elders' financial stability and caregivers' psychological well-being.     

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.     

Living and loving with dementia: Negotiating spousal and caregiver identity through narrative

In this paper, we examine how Alzheimer's disease and related disorders (ADRD) affect caregivers' perceptions of change in the identity of their afflicted spouse and the ways in which accompanying changes in caregiver identity influence intimate relations. We also explore how gender shapes the ADRD caregiving experience among married couples, specifically, the extent to which intimate relations are also gendered relations. The study group was comprised of spousal caregivers recruited from support groups in the two Midwestern states and from the Alzheimer's Disease Center (ADC) at a large Midwestern university hospital. In-depth interviews were conducted with 13 men and 15 women whose spouses had ADRD. The intensive interviews confirmed that identity change on the part of sick spouses had important implications for intimacy, although not always in adverse ways. The majority of caregiver husbands and wives reported diminished intimacy as a result of the ADRD. Many men and women believed they would retain feelings of closeness to their afflicted spouses as long as they were alive. Wives were more likely than husbands to report that changes in their spouses' identity altered how they identified themselves within their marriage. This has important implications for intimate relations between people with ADRD and those who care for them. Our findings suggest that caregiving and intimacy are very different experiences for men and women, and point to the need for caregiver education and support.     

Alzheimer's Disease:

Alzheimer's disease and other dementias are increasingly being recognized as important problems for older persons and their caregivers, but these disorders are rarely discussed in the context of elder abuse and neglect. This paper reviews information on the prevalence and clinical characteristics of Alzheimer's and other dementias and on the unique stresses experienced by Alzheimer's caregivers. Patients with Alzheimer's are often misdiagnosed and not accurately identified within medical and social service systems, and the special problems faced by caregivers and patients are not sufficiently addressed. Recommendations that would make clinicians and policy makers more responsive to Alzheimer's patients and their families are discussed.     

Alzheimer's Disease Caregiver Burden: Does Resilience Matter?

Caring for an individual with Alzheimer's disease is at times challenging and can lead to caregiver burden. Resilience is a personality characteristic that has emerged as a protective factor among aging individuals. This study was conducted to examine the moderating effect of resilience between caregiver stressors and caregiver burden. The results indicate that resilience was not identified as a moderator between stressors and caregiver burden; however, a relationship exists between resilience and caregiver burden. Specifically, as resilience in Alzheimer's disease caregivers increases, their caregiver burden decreases. These findings highlight the importance of supportive interventions that will increase resilience in Alzheimer's disease caregivers.     

Gay Bars and Serendipity

Abstract

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it places increased responsibility on family caregivers to provide on-going assistance. Based on a conceptual model of caregiving resilience, this study found high variation in caregiving outcomes with many caregivers demonstrating high levels of well-being despite adverse life circumstances. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. These findings suggest that HIV/AIDS and caregiving entail more than stress and distress and that future research needs to consider caregiving within the context of a historically disadvantaged community, resilience of informal caregivers, and risk and protective factors at the personal, cultural and community levels. Such information is necessary to design community-based interventions to support informal caregivers and persons living with HIV/AIDS.     

Greedy Spouse,Needy Parent: The Marital Dynamics of Gay,Lesbian, and Heterosexual Intergenerational Caregivers

It is well established that married heterosexual women do more intergenerational caregiving for aging parents and parents‐in‐law than married heterosexual men do. However, gay men and lesbian women's recent access to marriage presents new questions about the gendered marital dynamics of intergenerational caregiving. We use dyadic data with gay, lesbian, and heterosexual spouses to examine the marital dynamics of intergenerational caregivers. Results show that gay and lesbian spouses provided intensive time and emotional support for an intergenerational caregiver. In contrast, heterosexual women described their intergenerational caregiving as rarely supported and at times even undermined by their spouse. Dyadic data on heterosexual men corroborate women's accounts; heterosexual men rarely reported providing intergenerational caregiving, and thus heterosexual women rarely described providing spousal support. These findings provide new insight into the intermingled roles of “greedy” marriages and “needy” parents, wherein marital negotiations around caregiving vary by gender for gay, lesbian, and heterosexual marital dyads.     

When caregivers are in need of care: African-American caregivers' preferences for their own later life care

To “care for one's own” is a cultural expectation within a larger ethic of care in the African-American community. Applied to caregiving of aging elders, this ethic of care emphasizes the importance of providing in-home family care rather than opting for out-of-home placement. This study explores why a subset of African-American caregivers prefer or are open to out-of-home placement over in-home family care if they are no longer able to care for themselves. In-depth interviews with 24 family caregivers are analyzed. Three themes emerged including the desire to “spare our children” the burden associated with caregiving, viewing the next generation of potential caregivers as unequipped for the task, and having no one left to provide care for them.     

The Role of Appraisal and Expressive Support in Mediating Strain and Gain in Hispanic Alzheimer's Disease Caregivers

Abstract

The purpose of this study was to examine how appraisal of burden and satisfaction, and perception of expressive support mediate the effects of caregiving on depression, somatic complaints, life satisfaction and personal gain with a sample of Hispanic Alzheimer's disease (AD) primary caregivers. A purposive-snowball sampling technique was used to identify 103 Hispanic caregivers, who completed a self-report questionnaire. A translation-back-translation process was used to translate the instruments into Spanish. Translated instruments were then pilot tested prior to being administered to the participants. Appraisal of burden was found to mediate the effects of caregiving on depression and somatic complaints and had significant direct effects on life satisfaction. Appraisal of satisfaction did not have a mediating effect on any of the measures, but did have a direct effect on depression and personal gain. Expressive support did have a mediating effect on depression, as well as direct effects on somatic complaints and life satisfaction. These findings suggest a need for improving outreach to older minorities and developing culturally sensitive interventions that can improve caregivers' understanding of problematic behavior, thereby altering appraisal of the situation, as well as developing extended systems of support.     

Friendsourcing Peer Support for Alzheimer’s Caregivers Using Facebook Social Media

ABSTRACT

This research piloted an e-health intervention that used social media to friendsource peer support for Alzheimer’s disease (AD) caregivers. Friendsourcing is a variant of crowdsourcing. Crowdsourcing recruits online participants who share a characteristic that makes their volunteerism meaningful when they join to achieve an outcome. Friendsourcing recruits online participants who share membership in a social network that makes their volunteerism meaningful when they join to achieve an outcome. This article introduces our friendsourcing intervention research and examines the effects on the psychological well-being of AD caregivers. After a 6-week intervention, caregivers were found to have significantly decreased burden (Z?=??2.01, p?<?.05) and perceived stress (Z?=??2.95, p?<?.01). Emotional and informational support scores were significantly increased (Z?=??2.32, p?<?.05). Qualitative data analysis of the intervention identified positive effects in new caregiving knowledge acquisition and application and reduced stress in the acceptance of the caregiving role. Joining social networks in support groups through friendsourcing was feasible for AD caregivers who were familiar with social media, and can provide another means of guiding the development of their personal support networks.     

Gender,Spousal Caregiving,and Depression: Does Paid Work Matter?

Studies have shown that spousal caregiving leads to psychological distress, but few have analyzed the moderating effect of paid work. Using the 2000 to 2012 Health and Retirement Study and two‐stage least squares regression models, this study found that caregiving increased women's and men's depressive symptoms. Ordinary least squares models showed that caregiving had more adverse effects on women's mental health than on men's, but these differences were eliminated in two‐stage least squares models that accounted for the bidirectional effects of depression and caregiving. The current study also found that for women, part‐time work attenuated the depressive effect of spousal caregiving, whereas for men, part‐time work exacerbated it. These gender differences persisted even for intensive spousal caregivers. The authors suggest that caregiving women who work part‐time may benefit from work‐related resources. Caregiving men who work part‐time, however, may feel distressed, as their work–family experiences conflict with traditional gender norms.     

African American Informal Support Networks

Abstract

This study examined African American informal support network functioning utilizing Vaux's (1998) reciprocal exchange model. Ten African American caregivers of relatives with severe mental illness and their main informal helpers were interviewed using a semi-structured questionnaire. In 8 of the 10 African American families interviewed, one close relative, called a “main supporter,” assumed major responsibility, comparable to that of the primary caregiver, for care and supervision of the family member with mental illness. Main supporters felt that their family helper role, although stressful at times, gave meaning and purpose to their lives. Five main supporter-primary caregiver pairs formed 'joint households' to share economic and human resources and to facilitate caregiving duties. Social work intervention for caregiving families should provide assistance to both primary caregivers and their informal supporters, particularly main supporters.     

Spousal caregiving and crossing gender boundaries: Maintaining gendered identities

This study gathered in-depth interview data from a mostly rural sample (N = 22) of primary spousal caregivers for non-institutionalized persons with Alzheimer's disease (AD) and related dementias. In exploring the ways gender might influence caregiving, we find that husbands and wives both cross gender boundaries in order to give care to their spouses; and such traversing presents different challenges to each. Not only must they take on responsibilities that their spouses used to perform, but we also point to a generally invisible but important form of crossing gender boundaries — the maintenance of the gender identities of their spouses. Doing so involves more than simply performing tasks; it involves an implicit recognition of the other as a gendered being and the importance of masculinity or femininity to personal identity. Uncovering this latter dimension, and understanding how men and women approach their new tasks has important implications for theory and policy, including intervention strategies.     

Perceived overload as a predictor of physical strain among spousal and adult child caregivers of frail elders in the community

ABSTRACT

Family caregivers of frail elders can experience physical strain associated with caregiving. Identifying correlates of caregiver strain can provide an important impetus for tackling the causes and providing effective interventions. Utilizing data from the 1999 National Long-Term Care Survey, the current study examined correlates of caregiver physical strain among 956 family caregivers, using the stress process model. As multiple regression analyses indicated, the caregiver’s perceived overload predicted greater strain for both spousal and adult child caregivers. For both groups, common correlates of physical strain were caregiving demands, the caregiver’s perceived overload, and limitations placed on the caregiver’s life. The results demonstrate that the family relationship of the caregiver (spouse or adult child) leads to variations and dynamics in caregiver strains, due to qualitatively different relationships.     

Reciprocities in caregiving relationships in Danish elder care

This article examines the nature of the reciprocal relationships between elderly people and both their informal caregivers and home helpers in Denmark. One of the key results concerns the importance that elderly care recipients attached to various forms of reciprocity. The two major ones were hospitality and gift giving. While informal caregivers see their caregiving as normative or as generalized reciprocity, many stressed that the elderly person's personality and their expressions of gratitude and appreciation (symbolic reciprocity) were important factors facilitating caregiving. Home helpers spoke of satisfaction in helping others, but also underlined the fact that they could see some good role models for their own old age. The results are analyzed on the backdrop of the nature of the Danish welfare system, which provided liberal pensions and benefits. This indirect reciprocity enabled elderly people to retain their ability to participate in reciprocal social relations and preserve their integrity and independence.