Alzheimer's disease (AD) is a progressive, degenerative disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and results in behavioral changes and lack of communication. Family members and caregivers of persons with Alzheimer’s disease can assume added responsibilities and stress due to the progressive and degenerative component of this disability and places an added strain on the family system. This study was designed to examine predictors of quality of life of persons living with AD and to examine caregiver burden and predictors of quality of life of persons living with AD. This study hopes to empower the caregivers and test the resiliency model of family stress, sense of coherence and social support while incorporating individual patient and family needs by surveying caregivers involved with working with patients with AD. Specific aims of the study include validating relationships of the resiliency model while determining the importance of family resiliency, the sense of coherence, social support and the role of psychosocial interventions specifically Validation Communication Intervention (VCI), to reduce caregiver burden and to predict the quality of life in persons with Alzheimer’s disease. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

As part of an effort to understand psychological consequences among family members of patients sustaining a traumatic injury, medical research has turned to the role of resilience – or the ability to bounce back from and maintain psychological well-being in the wake of an adverse event— in mitigating the potential distress (i.e., depression and burden) of caregiving (Bonanno, 2004; Roberson et al., under review). This study sought to examine the ability for trait-resilience to predict trajectories of distress over the course of a year among 124 family members and loved ones of patients admitted to a Level I Trauma Center. A cross-lagged path model examining resilience, burden, and depression at baseline, 3, 6, and 12 months after injury showed that, while depression strongly predicted later burden, resilience was not a significant predictor of either outcome in the model. When depression and burden were subjected to a person-centered analysis (i.e., latent growth curve analysis), two major classes were identified: caregivers with high, chronic distress (33% of the sample) and low-moderate distress that declined over time. A three-class solution for caregiver burden further identified a moderate, increasing trajectory class. Predictive discriminant analyses revealed that trait-resilience was a major differentiating trait between class membership (rs = .23 for depression; rs = .32 for burden); further, presence of PTSD symptoms at baseline, gender, and history of depression were shown to be strong factors in distinguishing class membership across both outcomes. This study helps shed insight into the well-being of caregivers in the wake of a loved one's traumatic injury, in addition to possible identifying risk factors while patients are still admitted in the ICU. Lastly, the study provides alternatives for analyses that focus on longitudinal outcomes, particularly person- vs. variable-centered solutions.

With the increase in the elderly, American's caregiver roles and responsibilities are also on the rise. Developing with this increase is the growing problem of caregiver burden. The Loma Linda V. A. Hospital has developed a service known as the Home-Based Primary Care program designed to combat caregiver burden. Studies were conducted among caregiver participants in this program in an effort to evaluate overall levels of burden and the program's efficiency at meeting caregiver needs. Overall this program provides a useful model for future programs aimed at reducing caregiver burden. Limitations that can be improved, however, include consistency in scheduling, reliable staffing, and continuity in care.

Dementia of Alzheimer‟s Type is a degenerative neurocognitive disease accounting for majority of Dementia‟s. It affects millions of people worldwide and thousands of people in South Africa. Apart from the economic burden this illness places on the country, it has detrimental effects for those who provide care for individuals with this illness, who are mostly spouses. The spousal caregivers bears great financial, social and emotional burden which worsens as the disease progresses. The aim of this study is to phenomenologically explore and describe the lived experiences of spousal caregivers in caring for the spouses with Dementia of Alzheimer‟s Type. This South African study was therefore qualitative in nature and was conducted in the province of KwaZulu- Natal, in the city of Pietermaritzburg. Eight participants were interviewed using a semi-structured questionnaire. Data was analysed using interpretative phenomenological analysis (IPA). The main findings of this study are the negative emotional affects that the caregiving role creates. Caregiver stress and strain is experienced as well as the experiences of various losses including lack of intimacy and ruined expectations for the future as the disease progresses. The caregiving role also created negative implications for the social lives of caregivers and coping mechanisms were seen to be very important. / Psychology / M.A. (Psychology)

The AIDS pandemic has generated a large number of orphaned and vulnerable children (OVC) in Swaziland, as it affects the reproductive age group. Most of the OVC are being cared for by their grandparents who are old, poor and suffer from degenerating diseases of old age. The purpose of this study was to explore and describe the needs and support available for OVC under the care of grandparents in the informal settlements of Mbabane, Swaziland in order to develop guidelines for their care and support. A qualitative, exploratory, descriptive and contextual study was conducted to identify the needs of the OVC and type of support provided by organizations for these children. Data was collected using unstructured and semi-structured interviews. The study was conducted in three phases each addressing a research objective. In the first phase which was to identify the needs of OVC, twelve grandparents who cared for OVC in the informal settlements participated. For the second phase seven managers of organizations that provide support to OVC in the informal settlements participated. The third phase was the development of guidelines by the researcher and validated by participants and experts. The study highlighted the needs of OVC, the nature of the existing support structure and type of support provided by organizations for these children. The findings revealed that the OVC have developmental support, protection support, psychosocial support and support for survival needs. The themes identified from the analysis of the type of support provided by organizations were developmental, partnership, protection, psychosocial and support for survival needs. The organizations' support was inconsistent and inadequate to meet these needs due to the large number of OVC. Some of the weaknesses of organizations were indicated as donor dependency and lack of coordination and collaboration among organizations. The study highlighted partnership as fundamental to the successful implementation of the guidelines. / Health Studies / D. Litt. et Phil. (Health Studies)

The AIDS pandemic has generated a large number of orphaned and vulnerable children (OVC) in Swaziland, as it affects the reproductive age group. Most of the OVC are being cared for by their grandparents who are old, poor and suffer from degenerating diseases of old age. The purpose of this study was to explore and describe the needs and support available for OVC under the care of grandparents in the informal settlements of Mbabane, Swaziland in order to develop guidelines for their care and support. A qualitative, exploratory, descriptive and contextual study was conducted to identify the needs of the OVC and type of support provided by organizations for these children. Data was collected using unstructured and semi-structured interviews. The study was conducted in three phases each addressing a research objective. In the first phase which was to identify the needs of OVC, twelve grandparents who cared for OVC in the informal settlements participated. For the second phase seven managers of organizations that provide support to OVC in the informal settlements participated. The third phase was the development of guidelines by the researcher and validated by participants and experts. The study highlighted the needs of OVC, the nature of the existing support structure and type of support provided by organizations for these children. The findings revealed that the OVC have developmental support, protection support, psychosocial support and support for survival needs. The themes identified from the analysis of the type of support provided by organizations were developmental, partnership, protection, psychosocial and support for survival needs. The organizations' support was inconsistent and inadequate to meet these needs due to the large number of OVC. Some of the weaknesses of organizations were indicated as donor dependency and lack of coordination and collaboration among organizations. The study highlighted partnership as fundamental to the successful implementation of the guidelines. / Health Studies / D. Litt. et Phil. (Health Studies)

Indiana University-Purdue University Indianapolis (IUPUI) / Little is known regarding the psychosocial outcomes of adult siblings of adults with autism. Accordingly, the current study sought to: (1) illuminate factors that predict health-related quality of life, caregiver burden, and reported benefits in adult siblings of adults with autism, using a stress and coping framework and (2) compare outcomes of siblings of adults with autism (n = 31) to siblings of adults with Down syndrome (DS) (n = 54). For the within subject hypotheses, analyses were repeated within the DS group and an overall Disability group (n = 97). The Disability group consisted of participants in the Autism and Down syndrome groups plus twelve individuals in a mixed group of adult siblings of adults with DS who presented with co-morbid symptoms of autism. Variables were organized using The Adult Sibling Caregiver Conceptual Model (ASCCM) into three categories: antecedents (e.g., sibling relationship quality, problem behaviors of the disabled sibling), mediators (e.g., coping strategies, cognitive appraisal types), and psychosocial outcome variables (i.e., mental and physical health-related quality of life, caregiver burden, and reported benefits). For the within subject primary hypotheses, I posited a series of relationships between the antecedents and outcomes based on prior literature on demographic and individual difference predictors (e.g., siblings of adults with autism with fewer problem behaviors would have increased health-related quality of life [HRQOL], decreased caregiver burden, and increased reported benefits) and on stress and coping factors related to the burden of providing care for an individual with autism (e.g., greater use of avoidant coping strategies would be related to lower HRQOL, increased caregiver burden, and decreased reports of benefits). Exploratory hypotheses also were examined (e.g., being married would be associated with increased HRQOL, decreased burden, and increased reported benefits). The within-subject results indicated support for eight of the ten primary hypotheses and five of the six exploratory hypotheses when examined within at least one of the study groups: Autism, DS, or Disability. Overall, sibling caregivers, regardless of their sibling’s disability, reported more favorable psychosocial outcomes when demands were lower (e.g., less severe levels of problem behaviors, fewer autism symptoms exhibited by their disabled sibling, decreased additional pile-up stress), when resources were available to cope with stress (e.g., social support, respite care), and when healthy responses to stress were reported (e.g., use of emotion focused vs. avoidant coping strategies, use of challenge vs. threat appraisal types). Of note, reported benefits, which have rarely been examined in the autism literature, were strongly related to the quality of a sibling relationship across all study groups, and with the helpfulness of received services and perceived social support within the Autism group. The between subject hypotheses also were largely supported. As expected, compared to siblings of those with Down syndrome, siblings of those with autism demonstrated greater levels of caregiver burden and lower mental HRQOL. Moreover, there was a rank ordering in levels of caregiver burden across disability groups; siblings of adults with DS reported the lowest burden, siblings of adults with DS with symptoms of autism reported significantly higher levels of burden, and siblings of those with autism reported the most burden. The results imply that autism, either alone or co-morbid with another diagnosis, presents an increased risk of stress and caregiver burden, not only in parent caregivers, but also in sibling caregivers. Interestingly, there was also evidence for higher levels of stress related growth within the Autism group compared to the DS group. Future research will be needed to generalize the results of this study to broader samples of adult siblings while taking a life course perspective to assess changes in non-disabled siblings’ outcomes over time.