“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.     

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.     

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.     

Fighting the odds: strategies of female caregivers of disabled children in Zimbabwe

Caregivers of disabled children face numerous challenges in meeting their child’s needs. Research on Zimbabwean caregivers of disabled children is limited. Yet the difficult socio-economic, political and institutional context is expected to complicate the caregiving task. This article examines the resources and caring strategies of female caregivers in Mutare, Zimbabwe, using a well-being framework. Through a mixed-methods approach, the data reveals that external support is extremely limited, particularly due to stigma and a weak state. Caregivers are mostly self-reliant and their strategies focus on enabling themselves to take care of their child.     

Religious and Spiritual Dimensions of the Vietnamese Dementia Caregiving Experience

This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers' experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations.     

Internet-Based Clinical Services: Virtual Support Groups for Family Caregivers

ABSTRACT

Objectives: An internet-based psychotherapeutic support group intervention for family caregivers of persons with neurodegenerative diseases was developed in a series of pilot studies and subsequently evaluated in a feasibility study with 34 participants. The aim was to duplicate online group interactions typical of face-to-face support groups. Methods: A user-friendly web site was developed according to usability criteria for older adult users. Unique features of the web site included video conferencing in two formats, one-on-one and a group format with up to 6 participants and a facilitator. Following ten professionally facilitated sessions, each group evolved into a web-based self-help support group facilitated online by a group member. Results: Qualitative analyses of early, middle and late group video conferencing sessions yielded themes congruent with face-to-face group process. Follow up interviews six months following the initiation of the online groups showed overall positive participant responses in each of the following areas: learning to use computers, negotiating the web site links, obtaining disease-specific information from the website, using technology to communicate, bonding with group members, providing mutual guidance and support, and benefiting in terms of coping with the stresses of caregiving.     

Informal Caregiving: Dilemmas of Sandwiched Caregivers

Increased demand will intensify pressures for informal caregiving, especially for sandwiched caregivers. Using 1999, National Long Term Care Survey data, we contrasted socio-demographic statistics, care environments, activities of daily living (ADL) and instrumental activities of daily living (IADL) assistance, life quality, and employment burden of sandwiched versus non-sandwiched parental caregivers. Regression analysis explored variables influencing caregiving hours, employment accommodation, stress, strain, time for self, social life limits, free time, and excess burden. We found no differences in caregiving hours, no greater labor force accommodation, but lower quality of life among sandwiched caregivers with more than they can handle, but they undertook parent care despite quality of life reduction. Uniquely, the research indicates sandwiched caregivers’ employment mitigates stress, strain, and burden and supports policy changes providing more supportive workplace environments.

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.     

Caregiving mothers of children with impairments: coping and support in Russia

Parents providing long‐term care for their children with impairments face myriad physical and emotional challenges. Researchers have examined coping strategies among parent caregivers in various contexts internationally. However, little research has focused on caregiving mothers of children with impairments in developing countries, and even less on mothers in Russia. The purpose of this qualitative study is to investigate the ways in which caregiving mothers cope and their perceptions of services and supports they need and utilize in a small Russian city. Semi‐structured interviews were conducted with caregiving mothers (n = 20) concerning postnatal and current treatment, information and services, finances, social support, and future plans. Analysis revealed that planning for the future and navigating limited resources, overcoming structural barriers and cultural obstacles, and maintaining social support were the three most important facets of mothers’ abilities to cope with the demands of caregiving.     

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.     

Chapter 15. Dementia Caregivers

SUMMARY

Using a strengths-based perspective, the chapter first looks at the positive aspects of dementia caregiving. It then applies the functional age model to the dementia caregiving population. The model allows for a holistic study and assessment of an individual family member's biopsychosocial-spiritual functional capacity in conjunction with the family system's adaptive and coping ability. The role of culture of caregiving practices is also explored.     

Pathways of Adult Children Providing Care to Older Parents

Guided by life course and stress process theory, this study investigated pathways of adult child caregivers' family (caregiving, marital, parenting) and nonfamily (employment) roles. Eight waves of data from the Health and Retirement Study were analyzed for 1,300 adult child caregivers. Latent class analysis provided strong evidence for a 4‐class model of caregivers' role pathways. The four pathways were (a) Not‐Married, Early‐Transition to Not‐Working Caregivers (34%), (b) Married, Not‐Working Caregivers (26%), (c) Married, Late‐Transition to Not‐Working Caregivers (23%), and (d) Married, Not‐Working Caregivers with Coresiding Child (17%). Caregivers' background characteristics and contexts predicted pathway membership. Adult child caregivers have structurally diverse life pathways that have implications for theory, research, and practice.     

Who will care for the grandparents? Exploring relationships between grandparents and grandchildren

Adult children are often identified as primary caregivers for their older adult parents; however, in a growing number of cases, the adult child does not become the caregiver. Evidence of this includes the growing social phenomenon of grandparents raising their grandchildren. In this qualitative research project, the long-term caregiving relationship between grandparents and grandchildren living in grandparent-headed households was explored through interviews with three grandparent-grandchild dyads. The ongoing relationship in the dyads did not seem to mimic a parent-child relationship or a grandparent-grandchild relationship, but instead a third kind of relationship that requires further exploration.     

Caught Between Love and Money: The Experiences of Paid Family Caregivers

This paper considers the experiences of family home care providers, paid an hourly wage by California’s In Home Supportive Services program to care for disabled or elderly relatives. These caregivers are unique in that they provide care in what Arlie Hochschild calls the “third sector” of social life, where norms and responsibilities tied to work and family intersect. Drawing on in-depth interviews and ethnographic observations of family home care providers, we find that providers perceive their paid caregiving as deviant behavior that violates social norms surrounding family care, i.e. that people should not be paid for the care of kin. Family caregivers manage the norm violation associated with their carework by offering “accounts” that 1) emphasize the tasks and skill associated with caregiving and 2) by framing their carework as a public good that benefits the larger community. These accounts allow family providers to distance themselves from the norm violation of receiving a wage for care and to reconstruct their actions in a positive light.     

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.     

Caregiving for relatives with Alzheimer's disease: feelings of Chinese-Canadian women

Chinese-Canadian female caregivers were asked about their feelings of providing care for relatives with Alzheimer's disease. Using an adapted version of the conceptual model of Alzheimer's caregivers' stress by Pearlin et al. [Gerontologist 30 (1990) 583] to guide data collection, 12 in-depth interviews were conducted in Cantonese. Qualitative analysis was inductive and done manually. Despite anticipating and accepting their caregiving role as a cultural obligation, they, like most caregivers, felt overwhelmed, anxious, and fearful of the future. Against their stated cultural and personal values, all caregivers had made applications to nursing homes, and six were ready to institutionalize their relatives when a place became available. While coping mechanisms and social support appeared to mediate their stress, participants' concerns about the influence of western culture on traditional values and in particular, intergenerational issues regarding caregiving provided an added burden. Findings are particularly relevant given the rapid growth of the Chinese population in North America.     

Effects of Caregiving on Employment and Economic Costs of Chinese Family Caregivers in Canada

A telephone survey with 339 randomly selected Chinese Canadian caregivers examined the employment and economic costs of family caregiving for the elderly. Although the Chinese culture places a strong emphasis on filial obligation, caregiving is not without economic consequences. Caregiver’s age, financial adequacy, and employment, caring for an additional care receiver, and levels of assistance in Activities of Daily Living (ADL), were the predictors for economic costs perceived by family caregivers. Caregiver’s age, caring for an additional care receiver, and care receiver’s financial adequacy were significant predictors for male caregivers. Caregiver’s financial adequacy and higher levels of assistance in ADL were the predictors for female caregivers. Policies to support family caregivers should not just focus on the social aspect, but also the financial needs.     

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.     

A Contextual Analysis of Caregivers of Children With Disabilities

When a child is born with a disability, the caregiver's life is altered. With the numerous challenges caring for a child with disability brings, caregivers may feel devastated. These challenges often result in increased stress on the caregiver, which, in many cases, places the child at risk for maltreatment. The purpose of this study is to explore issues a caregiver faces when caring for his or her child. In this contextual analysis, seven caregivers of children with moderate-to-severe disabilities completed a questionnaire, were interviewed individually, and assisted the researcher in constructing an ecomap of their current living environment. Content from the interviews was analyzed and several themes developed from the data. Implications for clinical practice and future research ideas are discussed.     

Family caregivers of the elderly: quality of life and coping in Estonia

The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.