Thesis advisor: Sara Moorman / Studies show that family caregivers are at high risk for morbidity and mortality due to high strain and low efficacy. Dementia caregivers experience a particular type of strain because of the long term nature of the disease. Caregiver studies and intervention programs aim to lower strain and improve perceived efficacy, but they do not often look at these outcomes over time and how they may change throughout the prognosis. This thesis aims to analyze caregiver outcomes in relation to the duration of caregiving, individual characteristics, and type of diagnosis. By using linear regressions and hierarchical linear modeling, I find that caregiver outcomes do not change over time for the average caregiver but vary significantly among individuals. This emphasizes that caregiver strain and efficacy are not solely guided by caregiving tasks. Understanding relationships, perception of one's role, and the ability to adapt to changes are crucial to effective and sustained caregiving. / Thesis (BA) — Boston College, 2019. / Submitted to: Boston College. College of Arts and Sciences. / Discipline: Departmental Honors. / Discipline: Sociology.

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Informal caregiving is a growing phenomenon, but many family members and friends fall into the role unequipped with the necessary knowledge and skills. Informal caregivers often experience high levels of burden and are vulnerable to developing negative health outcomes. Effective and easily accessible interventions are needed for this group. This research evaluates the effectiveness of the Caregiving Essentials pilot course offerings and their online delivery. The objectives of the course are to increase the following in terms of the caregiver experience: 1) Knowledge, ability, skills, confidence, and self-efficacy in caregiving, 2) Self-reported sense of personal health and well-being, 3) Perceptions of health and well-being of older adults in their care, and 4) Understanding and access of the health and social service system. The evaluation study determines whether these four objectives were met, and to what extent. Additionally, the research explores the ways in which the online delivery of the course contributes to its overall effectiveness, and specifically, whether aspects of the web-based modality enhance or hinder participants’ learning experience. The methodology includes pre/post-course surveys (n=111/n=39), participant interviews (n=26), stakeholder interviews (n=6), and a focus group (n=5). Caregiving Essentials met many of the proposed research objectives. Increasing knowledge, understanding, and confidence was a stronger outcome than increasing the health and well-being of the caregivers and their care recipients. Overall, most of the participants reported positive experiences with the course, including a perceived positive future impact. Furthermore, the online delivery of the course enabled greater accessibility for participants and the discussion boards provided the opportunity for social interaction and a sense of community. The findings from this evaluation have been applied to future course offerings and may also inform other interventions for informal caregivers with similar objectives. In addition, this work provides contributions to policy decisions surrounding informal caregiving in Ontario, Canada. / Thesis / Master of Arts (MA)

<p>Caregivers of individuals with dementia describe a wide spectrum of caregiving experiences, ranging from very negative to very positive. Previous literature acknowledges these differing experiences, but how and why they differ has rarely been investigated. Dementia caregiving can be burdensome with many psychological, physical, social and financial challenges. However, it can also be an opportunity for growth and transcendence as caregivers find meaning in caregiving. High levels of mutuality (the perception that the quality of the care relationship is positive), reportedly ameliorates negative caregiver outcomes. Thus, this dissertation consists of three studies that explore aspects of the caregiver-care recipient relationship that may enhance positive caregiving experiences. </p><p> The first study was a secondary analysis of factors related to caregivers' perceptions of care relationship mutuality over a 12 month period. Caregivers who reported high mutuality were less likely to be depressed and more likely to provide care for longer periods before deciding to institutionalize the care recipient. The second study was a secondary analysis of caregiver interviews. It revealed that caregivers who reported a positive caregiving experience described both their past and present relationship in loving terms and reported that they understood their care recipient could not reciprocate. These caregivers focused on aspects of the relationship that still existed, rather than on what they had lost. They expressed satisfaction with caregiving, were other-focused, and reported little caregiving burden. The third study was a qualitative descriptive study. Caregivers who reported finding meaning in caregiving were interviewed to explore how they were able to do so. These caregivers used strategies such as accepting the situation, deciding to care, choosing a positive attitude, focusing on the blessings of caregiving, and actively seeking care resources. They demonstrated altruistic values and the determination and discipline to live those values. They also possessed strong faith, love, and social support, and said they had derived strength from past challenges.</p><p> Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in caregiver and care recipient outcomes. Caregiver interventions should include relationship-building skills and empathy building techniques to offset adverse caregiver outcomes and enhance understanding and acceptance of changes that occur in the care recipient over time.</p> / Dissertation

Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010). This dissertation looks at the wellbeing and family functioning of siblings who become the co-residential caregiver following the transition of a brother or sister with DD from parental to sibling co-residential care. The family systems framework was the theoretical lens for understanding caregiver wellbeing and overall family functioning. Hermeneutic-narrative inquiry was the approach for interviewing and exploring the stories of 10 sibling caregivers of a brother or sister with DD following their transition from parental to sibling co-residential care. Two analytical approaches were used. Firstly, structural analysis involved a within-case analysis of individual participants’ stories of transition to determine the meaning ascribed to and identified with the caregiving experience. Secondly, thematic narrative analysis included an across-case analysis to identify themes related to caregiver wellbeing, family functioning, reciprocity of mutual support, and anticipating the caregiver role versus actual experience. Findings from the structural analysis showed that the meaning of the caregiving experience included a duty, obligation, responsibility and commitment to the family. Results from the thematic narrative analysis showed overall lower social and emotional wellbeing among participants, reduced functionality among family members with respect to lower emotional and social functioning, reduced engagement in recreation/leisure activities, as well as lower economic functionality for sibling caregivers with no spouse or children. Sibling caregivers reported higher overall wellbeing and family functioning due to availability of formal supports (e.g., respite care, day program services), and informal support, such as having support from a spouse, child, or extended family member. Findings regarding reciprocity showed increased instrumental support among sibling caregivers and reduced emotional support. When anticipating the role, caregivers described knowing they would assume the role but were unclear of the shift to assuming a parental rather than sibling role. Other unanticipated discoveries included feeling captive to the role and feelings of helplessness. Caregivers’ actual experiences involved learning to manage new challenges, society’s patronizing view of persons with DD, and an overall sense of pride in caregiving for giving back to their sibling with DD. Grief and future planning were also discussed, including the effect of grief on the sibling caregiver, sibling caregiver’s children and sibling with DD. Future planning looked at the aspects of planning and not having planned for the future of the sibling with DD. The study concludes with implications for current and future social work practice and research, as well as the study’s strengths and limitations.

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Expressed emotion (EE) is a measure of the family environment reflecting the amount of criticism and emotional over-involvement expressed by a key relative towards a family member with a disorder or impairment (Hooley, 2007). Patients with high EE relatives have a poorer illness prognosis than do patients with low EE relatives. Despite EE's well-established predictive validity, however, questions remain regarding why some family members express high EE attitudes while others do not. Based on indirect evidence from previous research, the current study tested whether religious and nonreligious coping and shame and guilt about having a relative with schizophrenia serve as predictors of EE. A sample of 72 family members of patients with schizophrenia completed an EE interview, along with questionnaires assessing situational nonreligious coping, religious coping, and self-conscious emotions. In line with hypotheses, results indicated that nonreligious coping predicted EE. Specifically, less use of adaptive emotion-focused coping predicted high EE. Also consistent with predictions, religious coping predicted high EE above and beyond nonreligious coping. Finally, higher levels of both shame and guilt about having a relative with schizophrenia predicted high EE. Results of the current study elucidate the EE construct and have implications for working with families of patients with schizophrenia.

<p><bold>Background</bold>: Family caregivers for a parent with dementia often experience negative emotional consequences. These caregivers may also be at risk for compassion fatigue, a concept that was introduced to the health care community as feelings of anger, inefficacy, apathy, and depression resulting from a caregiver's inability to cope with devastating stress. Compassion fatigue was first observed in nurses and later in other caring professionals such as social workers and psychologists and the definition was adapted to focus on prolonged exposure to suffering as one of the primary causes.</p><p>Although compassion fatigue has not been studied in family caregivers providing care at home, their experiences, particularly those of adult daughter caregivers for parents with dementia, appear to create a foundation for developing compassion fatigue. For this reason, it was important to investigate compassion fatigue in this growing population of caregivers and this dissertation explored compassion fatigue in daughter caregivers for parents with dementia. The dissertation aims were to 1) identify common themes across the literature on compassion fatigue and to apply these themes and the existing model of compassion fatigue to informal caregivers for family members with dementia, 2) analyze secondary data from Project ASSIST to substantiate a need for further study of compassion fatigue in adult daughter caregivers of a parent with dementia, 3) explore the feasibility of studying compassion fatigue in family caregivers, and 4) explore compassion fatigue and the contributing factors and potential outcomes of compassion fatigue in adult daughter caregivers for parents with dementia.</p><p><bold>Methods</bold>: The dissertation consisted of three studies. The first study, a review of the literature addressed aim 1 of the dissertation as I applied the established model of compassion fatigue to family caregivers. The second study, a secondary analysis pilot study addressed aim 2 and aim 3 of the dissertation study. The third study of the dissertation was a qualitative study exploring the concept of compassion fatigue in daughter caregivers for parents with dementia. </p><p><bold>Conclusions</bold>: The literature review found evidence to support the components of the established model of compassion fatigue and findings suggested additional work was needed on the concept of compassion fatigue in family caregivers. Findings from the secondary analysis provided support for more in-depth exploration of the concept of compassion fatigue in family caregivers. Findings from the larger qualitative study provided support for many of the factors related to compassion fatigue, but also suggested revisions to the established model of compassion fatigue were needed. A revised model was created based upon the findings from this dissertation.</p><p>The revised model incorporates the contributing factors and moderators of compassion fatigue found in family caregivers and the model also proposes revised characteristics and outcomes of compassion fatigue. Findings from this dissertation also suggest new areas for research, specifically with all dementia caregivers and caregivers who do not utilize formal or informal support. Additional value from this dissertation derives from the detailed explanation of previous relationship quality, empathy, and caregiving experience. This dissertation is one of a few qualitative studies on compassion fatigue to provide this level of detail and serves to anchor future research on compassion fatigue in all family caregivers.</p> / Dissertation

abstract: While the literature on caregivers of loved ones with Alzheimer's Disease and Related Disorders (ADRD) has continued to grow, the relationship of ethnicity and acculturation factors with regards to the coping strategies used by caregivers has not been extensively explored. The current study included participants from the Palo Alto site of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project. The study examined differences in coping strategies between 140 non-Hispanic White, 45 less acculturated Latina, and 61 more acculturated Latina caregivers. Univariate and Multivariate Analysis of Variance, as well as post hoc analyses, were conducted to determine the differences among the three groups. Results indicated less acculturated Latina caregivers employ more avoidant coping strategies compared to non-Hispanic White caregivers. However, no differences were found among the other groups in their use of avoidance coping. Moreover, there were no differences found in the use of social support seeking, count your blessings, problem focused, and blaming others coping among the three groups. These findings have important implications for the design of culturally relevant psychoeducational and therapeutic interventions aimed towards meeting the individual needs of these three populations. In addition, the findings expand on the understanding of maladaptive coping strategies that may be potentially exacerbating caregiver distress among Latina caregivers. / Dissertation/Thesis / M.C. Counseling 2011

Dementia is a progressive syndrome with declines in cognitive and functional abilities. As the world’s population becomes increasingly older, prevalence rates are expected to increase exponentially to over 80 million affected by the year 2040. Individuals with dementia and their caregivers experience various difficulties associated with progression that increases stress for both parties. Caregiving can be burdensome and caregivers may employ a number of strategies to manage problems as they arise. Renewed interest has been focused on the care environment as one way to modify dementia progression as caregivers can be an influential person in the care recipient’s life. Two hundred sixty-six dyads consisting of persons with dementia and their caregivers were examined to investigate whether caregiving coping strategies influenced the care recipient’s time to severe dementia, institutionalization, and death. Using the Ways of Coping Checklist (WCCL-R), latent profile analysis was used to examine whether caregivers could be categorized based on their use of coping strategies. Results indicated that caregivers could be profiled based on their use of coping strategies on the WCCL-R, as follows: problem-focused, acceptance-based, emotionfocused, and low coping classes. While there was good assignment for the latent classes, caregiver characteristics were not predictive of these groups per multinomial logistic regression. Cox regression was used to analyze survival times to the clinical outcomes of severe dementia, institutionalization, and mortality. While the latent profiles did not predict survival time to the three outcomes, the emotion-focused class (n =12) showed a trend in predicting hazard of death (HR = .522, p = .066, 95% CI = .261-1.045). Longer duration of dementia was associated with higher hazard of severe dementia (HR = 1.181, p = .003, 95% CI = 1.057-1.319), while older age of dementia onset was associated with higher hazard of death (HR = 1.085, p Although caregiver coping profiles did not predict survival times for clinical outcomes, the successful classification of caregivers based on utilization of coping strategies may provide a useful way to study both caregiver and care recipient outcomes.