Background: Alzheimer’s disease is the most common form of dementia. The disease includes, amongother things, memory difficulties and impaired orientation. In the later phases of the disease the relative becomes increasingly dependent on others for help. Relatives have an important role in care by helping the relative to manage everyday tasks. Caring for a relative includes many challenges, where nurses have an important supporting role. Aim: The aim of this study was to shed light on relatives' experiences of caring for a loved one with Alzheimer's disease. Method: Qualitative literature review with thematic analysis method. Results: Two themes: To experience a new life situation and To manage a new life situation. Four subthemes: To experience role changes, To feel fear for the future, To find strategies to handle everyday life and Lack of information, knowledge and support. Conclusion: Relatives experienced their new role as overwhelming. Lack of knowledge and support complicates the care of a loved one. Research highlights the importance of focusing on the needs of the relatives and family focused care in health care. More research is needed on relatives' experiences of family-focused nursing in health care.

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Objective. Guided by Pearlin's stress process model, this study explored the health of the adult children caregivers for older adults in mainland China. Methods. Data were from a nationally representative sample of respondents aged 45+ (N=13,204) who participated in the China Health and Retirement Longitudinal Study Wave 2 (2013). Using logistic regression techniques, the first analysis focused on the relationship between caregiver status and social determinants of health and health disparities. For the second analysis, the moderating effect of employment status on caregiving time and depressive symptoms among 1,082 adult children caregivers was examined using multiple linear regression. Results. Adult children who were women, urban residents, younger, married, and had high school or more education were more likely to be caregivers than non-caregivers. Caregivers were more likely to live alone or live in three generation households and report fewer difficulties with physical functions compared to non-caregivers. Among caregivers, adult children who spent more hours providing care were more likely to experience more depressive symptoms as were adult children who were working outside of the home. The effect of caregiving time on depressive symptoms was moderated by employment status and gender. Unemployed men caregivers who spent more hours providing care reported the most depressive symptoms. Conversely, unemployed men caregivers who spent fewer hours providing care reported lowest level of depressive symptoms. / Ph. D. / This study focused on the health of adult children who provide care for older parents in mainland China. I analyzed social influences on health of caregivers versus non-caregivers and whether health differed in the two groups. In addition, I explored how working or not working and time spent providing care affected feelings of depression among adult child caregivers. Date for the study came from the China Health and Retirement Longitudinal Study Wave 2, collected in 2013. The 13,204 participants, aged 45 and older, represented all regions of China. Of these, 1,082 were providing care for a parent. First, I compared the personal characteristics of caregivers and non-caregivers to see if there were any differences between the two groups. Second, I examined the connection between the amount of time spent on caregiving and feelings of depression, and whether being employed or not made a difference in the time-depression connection. The findings showed that adult children who were women, living in urban areas, younger, married, and had high school or more education were more likely to be caregivers than non-caregivers. Caregivers were more likely to live alone or live in three generation households. Caregivers were more likely to better physical functioning compared to non-caregivers. Those who spent more hours providing care reported more depressive symptoms, and so did caregivers who were working outside of the home. Unemployed men caregivers who spent more hours providing care reported the most symptoms of depression. Unemployed men caregivers who spent fewer hours providing care reported the fewest depressive symptoms. Understanding the social factors related to health and family caregiving can help policy makers establish programs to support older families in mainland China. In addition, the findings can help shape health-related programs and community services for adult children caregivers that will actually meet their needs.

There are currently over 40 million unpaid care partners in the United States, and this number is anticipated to rise in the coming years. Most often, the care partner is a family member of the care receiver who has no prior experience in the caregiving role. Due to the unexpected nature of an acquired brain injury, whether traumatic or nontraumatic, family members are often allocated to this role without any warning while simultaneously trying to process the trauma that has just occurred. Many of these new care partners do not feel adequately prepared to navigate the varying physical, cognitive, and emotional needs of a care receiver following acquired brain injury. The term “second crisis” has been identified to describe the transition from inpatient rehabilitation to discharge home as care partners are often overwhelmed and met with feelings isolation and abandonment by the healthcare system. Care partner burden can lead to poor health outcomes and quality of life for both the care partner and care receiver. The Caring for the Care Partner program proposed here aims to mitigate the challenges faced by the care dyad when transitioning home from the hospital. Through the provision of more individualized care partner training, care partners will feel increased confidence in their role. By incorporating an occupational therapy perspective, this program acknowledges the importance of client-centered care for both the care partner and care receiver. It includes utilization of a learner profile to identify learning preferences, training for staff therapists highlighting strategies to provide more individualized care, group educational sessions for care partners on common topics faced in the caregiving role, and care partner participation in individualized training sessions with the care receiver. This doctoral project (1) discusses the theoretical and evidence base in current literature used to create the foundation of the program, (2) describes a detailed program description, (3) provides an extensive evaluation plan, and (4) addresses dissemination of information and funding to highlight future directions and sustainability of the program. Caring for the Care Partner signifies the value occupational therapists can provide in offering support to the care dyad as they transition to the home environment. Through participation in all components of the program, care partners will experience increased preparedness and confidence, which results in improved health outcomes and quality of life for both the care partner and care receiver.

Although a considerable body of research has looked at factors underlying mental health help-seeking behaviors, many facets of this pathway have received only marginal attention, particularly for internalizing concerns in children. Moreover, caregivers and culture can exert a pronounced influence on family dynamics, conferring values and beliefs that can facilitate or inhibit help-seeking. In a two-group study of international (n = 20) and domestic (n = 20) families, we sought to determine whether parental and cultural factors could differentially predict children's tendency to disclose, withhold, or mask internalizing (i.e., anxiety and depression) symptoms. Caregivers completed a battery of measures while children completed self-report questionnaires and an interactive activity to assess disclosure propensity. Results indicate that parenting and attitudinal factors are not necessarily implicated in predicting children's decisions for both anxiety and depression, and irrespective of cultural background. However, among international families, children's inclination toward disclosure of anxiety-related concerns reflected significant cultural influences (Wilks' λ = .386, Chi-square = 15.230, df = 6, Canonical correlation = .729, p = .019). Caregiver acculturation in particular was found to account for 84.2% of the variance, with children of less acculturated parents being more likely to mask as opposed to disclose or withhold. / Master of Science / Although a considerable body of research has looked at factors underlying mental health helpseeking behaviors, many facets of this pathway have received only marginal attention, particularly for internalizing (i.e., anxiety and depression) concerns in children. Moreover, caregivers and culture can exert a pronounced influence on family dynamics, conferring values and beliefs that can facilitate or inhibit help-seeking (Cauce et al., 2002). In a two-group study of international (<i>n</i> = 20) and domestic (<i>n</i> = 20) families, we sought to determine whether parental and cultural factors could differentially predict children’s tendency to disclose, withhold, or mask internalizing symptoms. Caregivers and children completed self-report questionnaires while children also went through an interactive story-based activity to assess disclosure propensity. Results indicate that parental styles and caregiver attitudes are not necessarily implicated in predicting children’s decisions for both anxiety and depression, and irrespective of cultural background. However, among international families, children’s inclination toward disclosure of anxiety-related concerns reflected significant cultural influences (Wilks’λ = .386, Chi-square = 15.230, <i>df</i> = 6, Canonical correlation = .729, <i>p</i> = .019). Caregiver acculturation in particular was found to account for 84.2% of the variance, with children of less acculturated (i.e., those families lacking social ties to the dominant cultural norms following immigration) parents being more likely to mask as opposed to disclose or withhold. Implications for guiding outreach to culturally diverse children and their families are discussed.

Yes / Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner- rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers. Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor–Partner Interdependence Model (APIM) framework. Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad. Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member’s life satisfaction and well-being, while the partner’s perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality. / ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’

The needs of the informal caregiver can be difficult to determine apart from those related to caring for the terminally ill loved one. Often, informal caregivers' individual needs are lost because of their day-to-day responsibility and care of their terminally ill loved one. The purpose of this project was to discover the characteristics of informal caregivers of the terminally ill. An integrated literature review was conducted using the Fineout-Overhalt, Melnyk, Stillwell, and Williamson's (2010) analytical approach to reviewing the evidence. The approach consisted of 7 levels for evaluating the hierachy of evidence. Inclusion criteria were studies limited from January 2004 to October 2015, English language, and full text. A total of 22 studies were reviewed and categorized according to 1 of the 7 hierachial levels, and findings related to the characteristics of informal caregivers were summarized at each appropriate level. Characteristics of informal caregivers were described regarding sociodemogrphics, such as age, gender, relationship with family members, financial status, and educational level. Characteristics of informal caregivers were discussed in relationship to the terminally ill loved one. The evidence did not concentrate on who the informal caregiver was without assessing their relationship to the terminally ill patient. It is recommended that a mixed-method approach be conducted to indentify characteristics of informal caregivers outside of their relationship with the terminally ill. Gaining a new perspective about the characteristics of informal caregivers for the terminally ill patient would help health care providers to more effectively meet their needs independent of the needs of the terminally ill loved one.

Parkinson’s Disease (PD) is a common progressive neurodegenerative disorder that leads to both physical and cognitive impairment over time. Eventually, these impairments may include the loss of autonomy, and the individual may require the assistance of an informal caregiver. Informal caregivers are critical in the care of individuals with PD and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden, mental health issues, as well as poor family dynamics. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. Given the rapidly aging population of Latin America, research suggests that the prevalence of PD is likely to increase substantially. Although cultural values such as familism may encourage informal caregiving in Latin America, very little is known about either PD patient or caregiver experiences in the region and how they may differ from those in the United States and Europe. As such, the current study built upon Pearlin’s caregiving stress process model to examine how PD-related impairments, caregiver burden and mental health, and family dynamics may differ between the United States and Mexico and to examine connections among the following variables in a sample of PD caregivers from the United States and Mexico: (a) PD-related impairments (motor and non-motor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, (c) PD-related impairments and mental health through caregiver burden, and (d) family dynamics which may moderate these relations. The current study consisted of caregivers of individuals with PD (total N = 253) from the United States (N = 105) and Mexico (N = 148). A series of t-tests and mediational models were conducted to determine the connections among PD-related impairments, caregiver burden and mental health, and family dynamics. Results suggested that caregivers from the United States site experienced higher levels of caregiver burden, although there were no significant differences in caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites, although family dynamics did not moderate these mediational models as hypothesized. Despite the importance of cultural values such as familism in Latin America, family dynamics explained more variance in the model at the United States site than at the Mexico site. Exploratory analyses found that caregivers from the Mexico site more frequently reported suicidal and self-injurious thoughts but did not find a significant disparity in self-reported gender of the caregiver. Overall, the current study identified significant relations among PD-related impairments, caregiver burden and mental health, and family dynamics among caregivers of individuals with PD from the United States and Mexico. Findings from the current study highlight a number of important interventions for caregivers and families, including caregiver burden and mental health, as well as family dynamics.

Background: Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure QoL of persons with dementia and their informal caregivers in New Zealand. To date, it is also the only study examining what interventions from primary and secondary care in New Zealand are helpful for enhancing QoL and what these interventions cost. Methods: In this prospective cohort study, questionnaires (including the Quality of Life-Alzheimer’s Disease Scale and the Neuropsychiatric Inventory) investigating various QoL-domains were administered to 53 outpatients of a memory clinic recently diagnosed with dementia, and their caregivers at baseline and 12-month follow-up. Time and resource utilisation were assessed in order to identify direct and indirect costs using questionnaires and diaries (over 12 months). Results: Cognition scores of persons with dementia (PWDs) ranged from 49 to 91 on the Modified-Mini-Mental State Examination (3MS); scores on the Clinical Dementia Rating Scale (CDR) ranged from 0.5 to 3, with 83% of PWDs being in the early stages of the illness at baseline (CDR ≤ 1). Most PWD measurements confirmed the predicted correlations including a strong link between PWDs’ and caregivers’ QoL. Many correlations remained stable over 12 months. Combined information and support interventions achieved significantly better PWD and caregiver QoL than single interventions. Direct costs (including costs of informal caregiving time) increased with an increase in dementia severity, neuropsychiatric and behavioural symptoms and functional limitations. There was a clear trend that caregivers were more distressed if patients received less in-home support. Direct non-medical costs of PWDs living at home did not increase with the severity of PWDs’ cognitive impairment. In 2008/09, there were an estimated 1,896 persons in Canterbury providing a total of 5.47 million hours of care for PWDs. This unpaid care had a value of NZ $135.8 million. Caregivers were much more likely to be depressed if they had a low income. More than one-third of family-caregivers (39.5%) thought that financial compensation for their time spent caring would enable them to look after the PWD at home for longer. Conclusions: A mix of different clinical and non-clinical (including economic) factors can predict QoL in dementia. The strong link between PWDs’ and caregivers’ QoL calls for a systemic approach in dementia care. QoL can be sustained over 1 year in a cohort of mainly early dementia patients and their informal caregivers. Developing psychosocial and financial incentives could be a key factor to support PWDs and their informal caregivers in New Zealand, consequently enabling them to live in the community for longer. These outcomes also have implications for health professionals and social policy makers which must be addressed as health practitioners and the wider community strive both for best practice and for cost-effective care of our increasingly ageing population.