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.     

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.     

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.     

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.     

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.     

Correlates of caregiving burden in schizophrenia:A cross-sectional,comparative analysis from India

Schizophrenia is a global mental health issue that has serious implications not only for the person with the diagnosis, but for caregivers as well. In Asian societies, the family tends to be the “natural” caregiver in such situations and the caregiving function is usually shouldered by parents or the spouse. Asian communities tend to be more closely knit, and it would be expected that more social support would be available to those facing distressing circumstances such as managing the demands of a person with mental illness. This study seeks to explore the perceived burden in family caregivers of persons diagnosed with schizophrenia, the coping strategies that come into play, as well as the extent of social support available to them. Standardized instruments were administered to collect data at a teaching cum treatment facility in south India. A quantitative methodology was used to analyze cross-sectional data from 75 primary caregivers of people with a diagnosis of schizophrenia and a reference group of caregivers of patients with general medical ailments. Results indicate higher levels of burden, low social support, and poor coping in the caregivers of people with schizophrenia than the reference group. Implications for intervention with caregivers are also discussed in this article.     

Eldercare policy between the state and family: Austria

Certain aspects of the Austrian system of social security and public welfare for the elderly, on the one hand, and family caregiving, on the other hand, are reviewed. In 1993, a new attendance allowance act for needy persons is being introduced in Austria. This reform includes cash payments on seven different levels according to the degree of need and is supposed to increase the opportunity of choice for the elderly. This assumption remains dubious; it should not be expected that a significant number of new informal caregivers can be recruited. Furthermore, empirical evidence shows that the elderly themselves clearly prefer the expansion of social services over paid family caregiving. There is a need for more research regarding the effects of interaction among the elderly, the family, and professional caregivers and for the promotion of an empowerment approach.     

Informal caregiving for elders in Sweden: an analysis of current policy developments

In Sweden, care of elderly people is a public responsibility. There are comprehensive public policies and programs providing health care, social services, pensions, and other forms of social insurance. Even so, families are still the major providers of care for older people. In the 1990s, the family was "rediscovered" regarding eldercare in Sweden. New policies and legislative changes were promoted to support family caregivers. The development of services and support for caregivers at the municipal level has been stimulated through the use of national grants. As a result, family caregivers have received more recognition and are now more visible. However, the "Swedish model" of publicly financed services and universal care has difficulty addressing caregivers. Reductions in institutional care and cutbacks in public services have had negative repercussions for caregivers and may explain why research shows that family caregiving is expanding. At the same time, a growing "caregivers movement" is lobbying local and national governments to provide more easily accessible, flexible, and tailored support. In 2009, the Swedish Parliament passed a new law that states: "Municipalities are obliged to offer support to persons caring for people with chronic illnesses, elderly people, or people with functional disabilities." The question is whether the new legislation represents a paradigm shift from a welfare system focused on the individual to a more family-oriented system. If so, what are the driving forces, motives, and consequences of this development for the different stakeholders? This will be the starting point for a policy analysis of current developments in family caregiving of elderly people in Sweden.     

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.     

Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia

Purpose: To describe factors influencing decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia. Design and Methods: Individual interviews were used to collect data with 30 Chinese family caregivers of older adults with dementia in Taiwan. Data were analyzed using thematic analysis. Results: Factors influencing caregivers' decisional conflict included the Chinese value of filial piety, limited financial resources and information, placement willingness of the older adult, family disagreement, distrust of nursing home care quality, and limited nursing home availability. Factors influencing caregivers' decisional conflict post placement included disappointment with nursing home care quality and self-blame for the placement decision. Implications: Findings resulting from this study indicate that Chinese family caregivers experience decisional conflict during the nursing home decision making process as well as after the placement decision. It is important to provide appropriate decision support beginning before admission and across the trajectory of the older person's nursing home stay in order to decrease decisional conflict and facilitate a more positive decision making process for caregivers, family members, and older adults with dementia.     

Disabling Spaces and Spatial Strategies: Feminist Approaches to the Home Environment of Family Caregivers of People with Dementia

ABSTRACT

The home environment becomes very important for family caregivers of people with dementia as a place of safety, retreat and care provision. Using a gender-based perspective, the authors analyzed thirteen interviews with family caregivers to understand how they perceived their home space. The data was analyzed thematically with the help of adjacency diagrams. Our analysis identified three main themes: compact layout, spatial flexibility, and the wider neighborhood. Given the gendered nature of caring, the findings are discussed drawing on the work of feminist architects regarding the home environment. The authors argue that feminist architectural approaches can usefully inform spatial strategies regarding dementia, ageing friendly housing, accessible living and the wellbeing of the caregiver. Different bodies and users’ needs should be at the epicenter of design, as opposed to conventional design and the current practices by developers, which may create a series of disabling spaces.     

The good daughters: Acculturation and caregiving among Mexican-American women

This study explores the dynamics of informal care of the elderly in Mexican-American families. Quantitative and qualitative data drawn from interviews with caregivers are presented, which illustrate how acculturation affects the caregiving experience itself and its consequences in terms of stress, burden, rewards, and overall satisfaction. The burden of caregiving for both highly acculturated and less acculturated caregivers was substantial, but there were dramatic differences between the groups in levels of satisfaction. Contrary to expectations, the less acculturated caregivers experienced greater stress, burden, and significantly lower satisfaction even though they were more clearly fulfilling role obligations and they had more family members available to assist with caregiving. Implications for policy and practice are discussed.     

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.     

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.     

“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.     

The influence of caregiving stressors, social support, and caregiving appraisal on marital functioning among African American wife caregivers

Using a stress and coping framework, we examined the influence of caregiving stressors, social support, and caregiving appraisal on the marital functioning of 100 African American wife caregivers. Results of separate multivariate analyses revealed received church support, caregiving burden, and caregiving satisfaction significantly predicted wives' marital functioning, when caregivers' background characteristics (age and education), length of caregiving, whether first marriage, and urban versus rural location were controlled. Receiving church support was associated with increased marital functioning. Lower levels of caregiving burden were associated with increased marital functioning. Higher levels of caregiving satisfaction were associated with increased marital functioning. Findings illuminate wives' caregiving and marital experiences, and have implications for family therapy and future research.     

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.     

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.     

Understanding Chinese-Canadian pathways to a diagnosis of dementia through a critical-constructionist lens

Efforts to understand pathways to a diagnosis of Alzheimer's Disease and Related Dementias (ADRD) are important in light of the benefits of early diagnosis to both patients and families, but very little is known about the ways in which persons with dementia and their family caregivers experience this pathway from the point of initial symptom recognition by family or friends to formal diagnosis seeking, particularly for immigrant older adults. Our team employed qualitative methods and a critical constructionist and intersectional framework to understand this experience from the perspectives of ten Chinese-Canadian dyads of persons with dementia and their caregivers. Situating the decisions made by these dyads relative to their intersecting identities and the power structures that inhibit them steered us away from essentializing attributions of their experiences to their ‘culture’ or ethnicity. Early signs of dementia were recognized as such in hindsight. There was no evidence of a strong link between culture and symptom appraisal. Knowledge about dementia, which may be influenced by culture, age, income, knowledge of English, and other determinants of health, played a role in symptom appraisal and help seeking. The role of family caregivers in care-seeking was more highly influenced by structural factors than by traditional Chinese cultural norms about family responsibilities and filial piety. Once caregivers realized that the symptoms and behaviors were ‘problematic,’ they quickly sought out additional information, usually from a family physician. At 1.5 years, the time between symptom onset and diagnosis is comparable to or shorter than that reported in research with other cultural groups. Gender-based power imbalance between female family caregivers and male Chinese-Canadian physicians appear to have contributed to delayed investigations and diagnosis. Sensitivity to such imbalances is important when working with older adults and those from more hierarchical cultures. Essentialized portraits of traditional family structures and cultural beliefs may not accurately reflect the variety of lived experiences of the dementia care-seeking by older Chinese immigrants in Canada.