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Long-term, publicly funded caregiver services in Texas have always focused on institution-based care, although informal caregiving makes up 8% of the country’s long-term care. Informal caregivers provide care to their loved ones who demand support due to illness, disability, or frailty. Taking care of one’s loved ones or family members is rewarding and demanding. Consequently, informal caregivers are known to encounter negative and positive psychological health effects and, therefore, should be provided with appropriate support. This is contributed by the fact many times, informal caregiving is unpaid, mentally and physically demanding, and often performed by individuals who are balancing their caregiving roles with other domestic duties and responsibilities. This phenomenological study explored stress and coping among informal caregivers from participants of Bell County in Central Texas. The research adopted a qualitative approach to assess caregiver demands, stress and burden, and caregiver mental and physical well-being. The study process included a screener survey, a demographics form, and recorded virtual interviews of 12 participants. The study findings indicated that caregiver stress and burden are directly related to the well-being of caregivers. Six themes were identified during the coding process which included caregiving, coping, day, experience, health, and stressors. Subthemes that were revealed included the definition and role of a caregiver, coping strategies, and resources and supports; a typical day, daily chores, and a difficult day; the caregiving experience, challenging experiences, and grief experiences; physical and mental health status; and stressors with full-time caregiver and stressful situations.

BackgroundThe emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program.ObjectiveTo examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes.DesignLongitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia.ConclusionsA single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.

Background: A majority of persons with dementia in Sweden live in their own homes and are often cared for by family members. Caring for a family member may be a positive experience. It may, however, also be a negative experience as symptoms like disturbing behavior and delusions may be difficult to encounter. The burden of being a family caregiver has been shown to affect the caregivers’ quality of life. Objective: To explore stakeholders’ perspectives on a potential mobile application through which family caregivers could be supported by healthcare professionals in caring for a person with dementia living at home. Method: Eight individual interviews with family caregivers and a focus group with eight healthcare professionals specialized in dementia care were analyzed using content analysis method. Results: The findings suggest that a mobile application can support family caregivers to meet their own needs in terms of finding structure in everyday life, how to get information and support in their own pace, and how to care for themselves. The findings also suggest the necessity of accessing relevant contact networks to be supported in the ability to care for a family member with dementia. Conclusion: Healthcare and social services mediated support provided through user-friendly mobile application has the potential to support family caregivers both in taking care of a person with dementia and caring for themselves. Moreover, it is important that the information provided to family caregivers is personalized according to the needs of the family caregivers as the family member’s dementia advances.

BackgroundThe emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program.ObjectiveTo examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes.DesignLongitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia.ConclusionsA single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.

BackgroundGlobally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia.MethodsUsing a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app.DiscussionThis tailor-made mobile app has the high potential to be a practical platform for support, QC 20201007

Background and objectivesManaging medications can be stressful for spousal caregivers, but little is known about particular aspects of medication management that are most consequential for caregiving outcomes. We examined care stressors and resources related to medication management, their associations with role overload among spousal caregivers, and whether these links vary by care recipients' number of chronic health conditions and dementia status.Research design and methodsThis cross-sectional study included 377 spousal caregivers of adults aged 65 and older from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate how medication-related stressors (ordering medication, keeping track of medications, giving injections) and resources (medication reminder systems, shared medication management within the spousal dyad) are associated with caregivers' role overload. Care recipients' number of chronic health conditions and dementia status were considered as moderators. Models controlled for caregivers' sociodemographic characteristics, chronic health conditions, and other care tasks.ResultsCaregivers who administered injections reported more role overload, whereas those who worked with care recipients to jointly manage medications reported less role overload. Keeping track of medications was linked to caregivers' greater role overload when care recipients had 5 or more chronic health conditions. Finally, care recipients' use of medication reminder systems was linked to less role overload for caregivers of a partner with dementia.Discussion and implicationsDevising strategies to assist spousal caregivers in the more onerous components of medication management and promote resources that mitigate medication-related stress may improve caregiver well-being.

Background and Objectives: The general view is that partner-caregiver burden increases over time but findings are incon-sistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlin’s Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time.Research Design and Methods: We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregiv-ers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results: Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregiv-ers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications: The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care.

The etiology of autism spectrum disorder (ASD) is multifactorial and complex and likely involves interactions among genetic, epigenetic and environmental factors. With respect to environmental influences, a growing literature implicates intrauterine experiences in the origin of this pervasive developmental disorder. In this prospective longitudinal design, we examine the hypothesis that fetal exposure to maternal cortisol may confer ASD risk. In addition, because ASD is four times more prevalent in males than females and because sexually dimorphic responses to intrauterine experiences are commonly observed, we examine whether or not any associations differ by fetal sex. Maternal plasma cortisol was measured at 15, 19, 25, 31, and 37 weeks' gestation in a sample of 84 pregnant women. ASD symptoms were assessed in their 5-year old children with the Social Communication Questionnaire (SCQ). Fetal exposure to lower levels of maternal cortisol was associated with higher levels of ASD symptoms among boys only. The observed hypocortisolemic profile exhibited by these mothers may indicate a risk factor that precedes the stress of caregiving for a child with ASD and may not be solely a consequence of the stress of caregiving as previously thought. Further, these findings confirm the value of examining prenatal hormone exposures as predictors of ASD risk and support the premise that altered prenatal steroid exposures may play a role in the etiology of ASD.

BackgroundPrior studies indicate that chronic stress is associated with obesity in adults. However, whether parental/caregiver stress is associated with obesity in their offspring has not been widely examined in Hispanic/Latino populations. In this study, we evaluated the role of caregiver chronic stress on child obesity and whether home food environment or child lifestyle behaviors explained the association.MethodsThe study included a sample of Hispanic/Latino youth and their caregivers (n = 473) from the Study of Latinos (SOL) Youth study and the Hispanic Community Health Study/SOL Sociocultural Study, which enrolled children aged 8-16 years from four cities (Bronx, Chicago, Miami, and San Diego), and provided assessments of adult chronic stress. Poisson regression models were used to assess the association between parental/caregiver stress and child obesity, adjusting for potential confounders.ResultsTwenty-two percent of caregivers did not report any chronic stressors, 48% reported 1-2, and 29% reported ≥3 stressors. The prevalence of obesity in youth increased with number of caregiver stressors from 23% among those without caregiver stressors to 35% among those with ≥3 stressors (p for trend 0.03). After model adjustment, youths whose caregivers reported ≥3 stressors were more likely to be obese than youths whose caregivers reported no stressors (prevalence ratio = 1.53; 95% confidence interval 1.01-2.32). This association was independent of food home environment, child diet quality, and child physical activity, but it was not independent of caregiver obesity.ConclusionsThese findings suggest that parental/caregiver chronic stress is related to obesity in their children. Future research is needed to confirm this association in longitudinal studies and in other population groups.

BackgroundNeuro-oncology caregivers face unique challenges. Caring for a patient who has a catastrophic, life-threatening diagnosis combined with progressive neurological decline can produce great distress. Experts agree that a formalized plan of care to address the needs of the neuro-oncology caregiver is needed.MethodsIn 2013, the Division of Neuro-Oncology at the University of California, San Francisco initiated a program designed to provide additional services to address the needs of the neuro-oncology caregiver. Records have been kept outlining program development, the caregivers seen, their identified needs, and services provided.ResultsFrom October 2013 through August 2015 staff met with 334 "new to clinic" caregivers, 90 of whom were caring for patients with newly diagnosed glioblastoma. One hundred ninety-eight caregivers were deemed at high risk for distress due to transitions in patient care that were occurring. One hundred forty-nine caregivers of former patients received bereavement services for up to 6 months. The areas of highest need were emotional support and advocacy issues. The number of caregiver needs increased as patients moved along the disease trajectory. The program was able to identify resources that were lacking. Dedicated staff allowed for improvement in the kinds of caregiver-specific support services offered.ConclusionDedicated caregiver staff allows for developing relationships with caregivers across the disease trajectory and appears to be important in being able to offer individualized assessments and tailored care plans. Evaluation of caregiver and patient outcomes is the next step in understanding program effectiveness.

Background: Caregiving can be stressful, potentially creating physical and psychological strain. Substantial evidence has shown that family caregivers suffer from significant health problems arising from the demands of caregiving. Although there are programs supporting caregivers, there is little evidence regarding their effectiveness. Acupressure is an ancient Chinese healing method designed to restore the flow of Qi (vital energy) by applying external pressure to acupoints. A randomized, wait-list controlled trial was developed to evaluate the effectiveness of a self-administered acupressure intervention on caregiver stress (primary objective) and stress-related symptoms of fatigue, insomnia, depression, and health-related quality of life (secondary objectives) in Chinese caregivers of older family members. Methods: Two hundred Chinese participants, aged ≥ 21 years, who are the primary caregivers of an older family member and screen positive for caregiver stress and symptoms of fatigue/insomnia/depression will be recruited from a community setting in Hong Kong. Subjects will be randomized to receive either an immediate treatment condition (self-administered acupressure intervention) or a wait-list control condition. The self-administered acupressure intervention will include (i) an individual learning and practice session twice a week for 2 weeks, (ii) a home follow-up visit once a week for 2 weeks, and (iii) 15-min self-practice twice a day for 6 weeks. The wait-list control group will receive the same acupressure training after the intervention group has completed the intervention. We hypothesize that Chinese family caregivers in the intervention group will have lower levels of caregiver stress, fatigue, insomnia, depression, and higher health-related quality of life after completion of the intervention than participants in the wait-list control group. Discussion: This study will provide evidence for the effectiveness of self-administered acupressure in reducing

Research in cancer family caregivers has been theoretically guided by a transactional paradigm of stress. This paradigm suggests that caregiving is stressful, that caregivers cope with their situation in different ways, and that mediating variables influence caregiver experienced outcomes. Many caregivers experience emotional problems (e.g., depression and anxiety). Asking oneself “Why does it happen to my loved one?” increases problems. This is a question with no answer that increases the caregivers’ negative outcomes. Nevertheless, the search for meaning can provide new possibilities for a better understanding of how caregivers may experience positive outcomes through caregiving. Values are the basis of meaning for Victor Frankl who suggests that they fall into three categories: experiential, creative, and attitudinal. Furthermore, self-transcendence and ultimate meaning can help people in difficult situations. So, finding meaning may help caregivers to manage their stress. No one can find meaning for someone else, but health professionals can encourage the search as a way to a satisfactory level of mental health., La investigación sobre cuidadores de familiares con cáncer ha seguido el paradigma transaccional del estrés. Este paradigma sugiere que cuidar es estresante, que los cuidadores afrontan su situación de maneras diferentes y que hay variables mediadoras que influyen en los resultados experimentados. Muchos cuidadores experimentan problemas emocionales (e.j., depresión, ansiedad). El preguntarse “Por qué le pasa esto a mi ser querido” aumenta los problemas. Sin embargo la búsqueda de sentido, de la vida y de la situación vivida, puede aportarnos nuevas posibilidades de comprensión de cómo los cuidadores pueden experimentar elementos positivos en el cuidado. Los valores son la base del sentido según Frankl que sugiere que son de tres tipos: experienciales, de creación y de actitud. Además la autotrascendencia y el sentido último pueden ayudar en situaciones difíciles. Así, la búsqueda de sentido puede contribuir a que los cuidadores manejen mejor su estrés. Aunque nadie puede encontrar sentido por otro, los profesionales de la salud pueden alentar su búsqueda como camino hacia un mayor equilibrio psíquico.