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Aim: This study aimed to examine the extent, range and variety of research in Europe describing healthcare interventions for older people with dementia (PwD) and family caregivers. Methods: This was a scoping review and followed the PRISMA Scoping Review guideline. MEDLINE, CINAHL and Cochrane library databases were searched for studies published between 2010 and 2020. Studies reporting healthcare interventions in Europe for PwD over 65 years and their family caregivers were included. Results: Twenty‐one studies from six European countries were included. The types of healthcare intervention identified were categorized as follows: (1) family unit intervention (interventions for both PwD and their family caregiver), (2) individual intervention (separate interventions for PwD or family caregivers) and (3) family caregiver only intervention (interventions for family caregivers only but with outcomes for both PwD and family caregivers). Conclusions: This review provides insight into healthcare interventions for older PwD and family caregivers in Europe. More studies are needed that focus on the family as a unit of care in dementia. Summary statement: What is already known about this topic? In Europe, the population is ageing, and the number of People with Dementia (PwD) who require long‐term care and family support is increasing.A diagnosis of dementia is a 'family affair', as dementia is associated with physical, emotional and social costs for both PwD and their family caregivers, with impacts on family dynamics and functioning, even more so, when the PwD are older. What this paper adds? This scoping review provides insight into the types of healthcare interventions targeting older PwD and family caregivers in Europe.It reveals that most studies (n = 19; 90%) consider the family of PwD as the 'context of care' and not as a recipient of care. As a result, the focus of interventions is on the well‐being and health of the PwD first and the family second, being seen as a resource for the care of the PwD. Implications of the study The family plays a central role in long‐term care of older PwD.A holistic approach to dementia care is needed that focuses on the health of family caregivers of PwD, in addition to the health of PwD. [ABSTRACT FROM AUTHOR]

Background: Many caregivers are insufficiently prepared, and little is known about measures that can be employed to enhance their preparedness. Aim: The aim of this study was to explore the factors associated with caregiver preparedness and establish a predictive model including the relationship between preparedness, burden, resilience and anxiety. Design: A cross‐sectional design was used. Methods: The sample included 172 family caregivers who were selected from one private hospital and daytime nursing centres. Caregivers were recruited from 2018 to 2019; they completed assessments for caregiver preparedness, anxiety, resilience and burden. A multiple linear regression analysis was performed to identify the factors associated with preparedness. Results: Preparedness was significantly associated with high levels of resilience and a low level of burden, while it was not associated with anxiety. Caregivers' gender, experience and cohabitation status were the main predictors. Resilience is an explanatory factor for caregiver preparedness in the predictive model. Conclusion: The demographic variables related to preparedness can be used to guide efforts to meet the needs of vulnerable caregivers. A caregiver's preparedness depends on their level of burden and resilience. Nursing interventions focused on these aspects could make the caregiver's role easier and improve the quality of care provided. Summary statement: What is already known about this topic? Many caregivers are inadequately prepared for this role, and ensuring adequate preparedness is important for family caregivers.Preparedness and factors predictive of this in Spanish family caregivers have not been well‐documented.Resilience, burden and anxiety affect caregivers, but the degree to which they influence caregivers' preparation levels is unknown. What is the contribution of this paper? Specific factors influence the preparedness of family caregivers. Men and caregivers who do not cohabit in the same household with the care‐dependent person may present greater deficits in preparedness. Moreover, poor health and lack of experience in caring can result in inadequate caregiving performance.Readiness, resilience and burden are significantly related, and the best predictor of family caregivers' preparedness is resilience.Resilience leads to greater preparedness in caregivers, and better‐prepared caregivers experience a lighter burden. What are the implications of this paper? Knowing the factors associated with preparedness in advance will allow health‐care professionals to prevent deficits in vulnerable family caregivers.Resilience is a decisive factor which prevents negative consequences such as low preparedness. A resilient coping style can diminish the burden and promote successful adaptation in caregivers. [ABSTRACT FROM AUTHOR]

Aims: This study aimed to investigate the relationship between family caregivers' health‐related quality of life and health outcomes in care recipients. Methods: A total of 160 female caregivers in Japan were initially assessed using self‐reported baseline questionnaires to determine physical and mental aspects of their health‐related quality of life. Based on these scores, they were divided into three groups: lower, middle, and higher quality of life. We followed up with the 133 participants (after excluding those that did not respond) 6 years later to assess the health of their care recipients; 36 caregivers continued to provide home care, while 97 reported that their care recipient had died or been admitted into institutionalized care. Results: Statistically, a higher risk for care recipients' health deterioration was strongly associated with the mental component score in the lower caregivers' quality of life group of than for the middle group, after adjusting for the care recipients' age, health status, and caregivers' age at baseline. There was no significant association between deterioration of health of care recipients and physical component scores of the caregivers. Conclusion: Caregivers' poor health‐related quality of life, particularly poor mental health, may be linked to the deterioration of care recipients' health. Summary statement: What is already known about this topic? Family caregivers reportedly have lower quality of life than noncaregivers.While factors associated with decreased quality of life of caregivers such as high caregiving burden and longer care duration are being identified, they remain difficult to prevent.Lower caregiver quality of life may negatively influence the care recipients. What this paper adds? Poor mental health in caregivers, calculated with health‐related quality of life scores, is associated with health deterioration of care recipients.Physical health in caregivers is not associated with health deterioration of care recipients. The implications of this paper: Support for improving the health‐related quality of life of caregivers is necessary, especially in relation to their mental health, from the viewpoint of maintaining the health status of care recipients. [ABSTRACT FROM AUTHOR]

Aim: To identify the factors pertaining to the quality of life (QOL) among the mothers of patients with cerebral palsy. Methods: In this cross‐sectional study, 203 mothers of children with cerebral palsy were selected using convenience sampling. The World Health Organization's Quality of Life Questionnaire (WHOQOL‐BREF), the Beck Depression Inventory, the Caregiver Difficulties Scale, Fatigue Severity Scale, and a demographic information questionnaire were administered to these caregivers. Hierarchical multiple linear regression analysis was used to detect the factors associated with QOL. Results: Moderate to high significant negative correlations were observed between all WHOQOL‐BREF domains and the other measures. The demographic/clinical variables were controlled, and hierarchical multiple linear regression analysis was run. The results indicated that depression, the burden of care, fatigue, and the type of cerebral palsy could significantly predict QOL in these mothers. Furthermore, QOL was lower in the mothers of children with tetraplegia than those of children with other types of disabilities (P <.05). Conclusion: QOL of mothers of children with cerebral palsy is negatively impacted by various factors such as burden of care, fatigue, and psychological symptoms. Thus, a holistic approach, including training (carrying, positioning, feeding, and how to manage the self‐care of children) and psychological interventions, is required to improve QOL among this population. SUMMARY STATEMENT: What is already known about this topic? Unlike developed countries, there are a few studies conducted on caregivers of patients with cerebral palsy in developing counties.The lack of any supporting systems in developing countries caused most of the burden of care to be on the shoulders of caregivers. What this paper adds? This paper showed that the burden of care of mothers caused psychological symptoms such as depression, stress, and decrease in QOL. The implications of this paper: Considering the chronicity of cerebral palsy and that caregivers may provide care long‐term, interventions are needed in order to decrease the burden of care and psychological symptoms and enhance QOL.The significant relationship between severity of cerebral palsy and burden of care indicates special training packages could be targeted to decrease the burden of care, physically, emotionally, and financially. [ABSTRACT FROM AUTHOR]

1HypothesisDisabled elders' activities of daily living, caregiver burden, caregiver depression, and caregivers' life satisfaction are significantly related to the life satisfaction of elderly people with disability.2HypothesisThere are direct and indirect effects between the life satisfaction of elders, disabled elders' activities of daily living, and family caregivers' factors. This study explored the interrelationships of disabled elders' life satisfaction and activities of daily living, caregivers' factors (burden, depression, and life satisfaction) through a structural equation model. In total, 621 dyads of disabled elders and informal family caregivers completed questionnaires during face ‐ to ‐ face interviews in Xinjiang Uyghur Autonomous Region from September 2013 to January 2014. Activity of daily living exerted a direct effect on life satisfaction of disabled elders and 30.4% indirect effect through caregivers' factors. Caregiver burden had a 60.0% direct effect on life satisfaction of disabled elders and a 40.0% indirect effect through the caregiver depression. Caregiver depression showed 76% direct effect on life satisfaction of disabled elders and 24% indirect effect through caregivers' life satisfaction. Direct relationships between activity of daily living and caregiver burden, caregiver burden and caregiver depression, and caregiver depression and caregivers' life satisfaction were observed. Activity of daily living had a 91.3% indirect effect on caregiver depression mediated by caregiver burden; caregiver burden had a 40.0% indirect effect on caregivers' life satisfaction mediated by caregiver depression. Results provide useful information for nurses and policymakers and shed light on the need to consider caregivers' factors in improving care recipients' life satisfaction. SUMMARY STATEMENT: What is already known about this topic? Disabled elders' life satisfaction is related to factors of the poor state of their own and caregivers' problem e.g. caregiver burden.The mechanism of how the factors affect disabled elders' life satisfaction is unclear. What this paper adds? The study created a causal chain among the disability elders' activity of daily living, caregivers' burden, depression, life satisfaction, and disabled elders' life satisfaction and explored the interrelationship between above factors and disabled elders' life satisfaction.Findings indicated that family caregivers' burden not only affects elders' life satisfaction directly but also brings further problems to affect disabled elders' life satisfaction indirectly. The implications of this paper: Government should pay high attention to the families of elderly people in long ‐ term home care; pension policies should support elders' families including informal family caregivers in poverty ‐ stricken ethnic minority areas.Examples of support include establishing assistance for the disabled elders, care training for family caregivers for free, establishment and improvement of respite care institutions, and psychological counselling. The caregiver's health should be comprehensively considered; formulation and improvement of a specialized disabled elders' family services.Nursing educators should include knowledge of the elderly in home care and ways of coping with care, nursing skills, and time management should be taught to family caregivers. [ABSTRACT FROM AUTHOR]

This paper examines the experiences of mothers caring for a child with Down syndrome in the Malaysian ( Sarawak) context. Qualitative interviews were conducted with 26 biological mothers of children with Down syndrome aged 18 years and below. They were accessed through selected child health clinics, community-based rehabilitation centres and schools using purposive sampling within two regions in Sarawak, one of the two Borneo States of Malaysia. Major themes emerging within the context of care demands were children's health, developmental delays, daily needs and behaviour issues. The insights obtained into the care demands experienced by mothers of children with Down syndrome have several implications for practice by care professionals. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to assess the caregiver burden over time of patients with haemorrhagic stroke and the determinants of this. Background: Identification of the predictors for caregiver burden can be used to improve the outcomes of stroke survivors and caregivers. Few studies focus on the caregiver burden of patients with haemorrhagic stroke and how this changes over time. Design This was a prospective longitudinal study. Methods: A convenience sample of 202 stroke survivor/caregiver pairs were recruited in the neurosurgery unit from March 2015 to March 2016. The participants were assessed at three different times by face to face or telephone interview. Caregiver burden was assessed using the Bakas Caregiver Outcomes Scale. Sociodemographic data and other characteristics of the pairs were also collected. Multiple linear regression was performed to identify the determinants. Results: Caregiver burden decreased from T1 to T3 significantly. The physical function, depression of stroke survivors, and self‐rated burden of caregivers were the most important determinants for overall caregiver burden. The factors identified explained 41.6% to 67.4% of overall burden. Conclusion: Caregiver burden decreased over time, affected by factors from patients and caregivers. More professional caregivers are needed to support informal carers. SUMMARY STATEMENT: What is already known about this topic? Stoke survivors usually contribute much of the perceived burden of caregivers, especially for family caregivers.Perceived caregiver burden can have adverse effects on both caregivers and patients.Caregiver burden is affected by multiple factors from both caregivers and patients, which vary in different cultures. What this paper adds? Caregivers of patients with haemorrhagic stroke experience burden even during the patients' hospital stay.The factors identified for caregiver burden in China differ from what has been identified in western countries.The self‐rated burden of caregivers is a predictor for overall burden, suggesting this may be used as a screening function. The implications of this paper: The study suggests the early screen of caregiver burden via self‐rated burden could help to detect long‐term burden.There is a need for nurses and other professions to provide psychological nursing and functional rehabilitation to patients postdischarge from health care services.More professional care providers are needed to support informal carers. [ABSTRACT FROM AUTHOR]

Tanrıverdi D, Ekinci M. International Journal of Nursing Practice 2012; 18: 281-288 The effect psychoeducation intervention has on the caregiving burden of caregivers for schizophrenic patients in Turkey This study was conducted to determine the effects psychoeducation given to caregivers of schizophrenic patients has on the level of care burdens. The model used was one group pre-test post-test pre-experimental model. It was conducted on 31 caregivers in psychiatry clinics between October 2007 and June 2008. Data were collected using the 'Zarit Caregiver Burden Scale' and the questionnaire form that determined the introductory features of caregivers. The study group participated in eight psychoeducation sessions. The average pre-test score of care burden for caregivers was 57.2 ± 9.9, and the average post-test score was 34.3 ± 9.9. The distinction between the average pre-test and post-test score of care burden for caregivers was significant ( P = 0.001). Psychoeducation, given for caregivers of patients with schizophrenia, had a significant effect in decreasing individuals' caregiving burdens. Psychoeducation programmes directed at families should be considered as a therapeutic strategy for patients with schizophrenia. [ABSTRACT FROM AUTHOR]

Kamel AA, Bond AE, Sivarajan Froelicher E. International Journal of Nursing Practice 2012; 18: 147-154 Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. [ABSTRACT FROM AUTHOR]

The aim of this study is to examine the burden of family caregivers of patients with retinoblastoma in China and the relationships between depression, caregiver burden and social support. A descriptive and correlational survey was conducted with 117 Chinese family caregivers of outpatient patients with retinoblastoma from the Department of Ophthalmology of a tertiary hospital in Shanghai, China. Family caregivers of outpatient patients with retinoblastoma were asked to respond to four questionnaires including sociodemographic questionnaire, Becker Depression Inventory, Caregiver Burden Inventory and Social Support Rating Scale. The incidence of depression in this study was 51.3%; the average score for social support indicated moderate social support available to the caregivers, although their level of caregiver burden was heavy. Depression scores were significantly positively correlated with caregiver burden scores and significantly negatively correlated with the social support scores. Heavy caregiver burden was associated with lower monthly income, low subjective social support and less use of social support. [ABSTRACT FROM AUTHOR]

Lee S-J, Li L, Jiraphongsa C, Rotheram-Borus MJ. International Journal of Nursing Practice 2010; 16: 57–63 Caregiver burden of family members of persons living with HIV in Thailand Caregivers of people living with HIV (PLH) in Thailand face tremendous caregiver burden. This study examines complex ways in which caregivers' mental health affects their levels of caregiver burden. This study uses data from 409 caregivers of PLH in northern and north-eastern Thailand. Multiple regression models were used to examine the predictors of caregiver burden. Depression was significantly associated with caregiver burden ( P < 0.0001) and being HIV positive ( P = 0.015). Inverse associations were observed between depression and quality of life ( P < 0.0001) and caregiver burden and quality of life ( P = 0.004). Social support had direct positive association with caregiver's quality of life ( P < 0.0001). Our findings underscore the complex relationship between caregiver burden, depression and HIV-status. Interventions that address the caregiver burden are urgently needed. [ABSTRACT FROM AUTHOR]