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Spouse care

The following resources examine caring for a spouse/partner and co-dependency.

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Spouse and Adult-Child Dementia Caregivers in Chinese American Families: Who Are More Stressed Out?

Background: Though many studies have explored differences between spouses and adult children in dementia care, empirical evidence is lacking on racial- and ethnic-minority populations. Methods: To fill this research gap, this study examined care tasks, caregiver burden, and depressive symptoms of Chinese spouse and adult-child caregivers in dementia care. Guided by the stress process model, this study asked 3 questions: Do spouse and adult-child caregivers take up different care tasks and experience different levels of caregiver burden and depressive symptoms? Does gender moderate the differences between spouse and adult-child caregivers? Whether care tasks and burden mediate the association between being a spouse/adult-child caregiver and depressive symptoms? Data were collected from a questionnaire-based survey of Chinese Americans who provided care for their family members with dementia in New York City. The analytical sample included 126 Chinese spouse or adult-child caregivers. Care tasks was indicated by intensity of 8 types of care tasks. Caregiver burden and depressive symptoms were measured by Zarit's Burden Interview and the 10-item Center for Epidemiologic Studies Depression Scale. Linear regression, interaction term (spouse/adult-child caregiver by gender), and path analysis were conducted to address the 3 questions. Results: The results of linear regression show no significant difference in care tasks between the 2 groups, but spouse caregivers had significantly higher levels of caregiver burden and depressive symptoms than adult children. Wives had higher levels of caregiver burden and depressive symptoms than husbands, daughters, and sons. Caregiver burden mediated the association between being a spouse caregiver and higher depressive symptoms, whereas care tasks did not shape such association. Conclusions: This study highlighted the emotional stress of Chinese American older adults in providing care for their spouses. The findings indicate the necessity of developing culturally meaningful activities to support Chinese American spouse caregivers.

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Sociocultural Influences on the Feeling of Loneliness of Family Caregivers of People with Dementia: The Role of Kinship

Background: The extent to which familism, dysfunctional thoughts, and coping variables contribute to explaining feelings of loneliness in caregivers, controlling for kinship, is analyzed. Methods: Participants were 273 family caregivers of people with dementia. Sociodemographic variables, familism, dysfunctional thoughts, coping strategies for requesting and receiving help, perceived social support, and leisure activities were assessed. The fit of a theoretical model for explaining the effect of cultural and psychological variables on feelings of loneliness in each kinship group was tested. Results: No significant differences in the distribution of loneliness by kinship were found. Higher levels of familism are associated with more dysfunctional thoughts, that are linked to more maladaptive strategies for coping with caring (e.g., less social support and fewer leisure activities). This in turn is associated with higher scores in the feeling of loneliness. The model bore particular relevance to the group of daughters, husbands, and sons, yet not in the case of wives. Conclusions: Sociocultural and coping factors associated with the caring process seem to play an important role in explaining feelings of loneliness in caregivers. Sociocultural factors associated with the care process seem to play an important role in explaining feelings of loneliness in caregivers.

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Social Isolation Among Spousal and Adult-Child Caregivers: Findings From the Canadian Longitudinal Study on Aging

Objectives: The caregiving outcomes of spousal and adult-child caregivers are widely studied since they are the most common source of support provided to adults. However, the literature on social isolation among spousal and adult-child caregivers is very limited. In order to further elaborate and specify unique caregiving outcomes, this study focuses on social isolation, both longitudinally and comparatively between spousal and adult-child caregivers. Methods: This study was based on the Baseline and Follow-up 1 data from the Canadian Longitudinal Study on Aging. A total of 5,226 participants (1,293 spousal caregivers and 3,933 adult-child caregivers) were selected. The Linear mixed models were used to examine the effect of caregiver type and caregiving intensity on social isolation over the course of survey. Results: Spousal and adult-child caregivers reported greater social isolation over time, and spousal caregivers exhibited a steeper increase in social isolation from Baseline to Follow-up 1 than adult-child caregivers. Also, an increase in caregiving hours resulted in greater social isolation. Finally, male spousal or adult-child caregivers were more likely to be socially isolated over time than their female counterparts. Discussion: The findings of this study contribute to the existing literature on caregiving outcomes by demonstrating an association between family caregiving and social isolation. The results indicate a strong need for intervention programs that aim to enhance social connectedness among family caregivers, and especially for those who perform intensive caregiving, are older age, and are from a lower socioeconomic status.

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Relationship Satisfaction in People with Parkinson’s Disease and Their Caregivers: A Cross-Sectional Observational Study

Background: Parkinson’s disease (PD) is a neurodegenerative disorder, which leads to reduced health-related quality of life (HR-QoL) and autonomy in advanced stages of the disease. Hence, people with PD (PwPD) are in need of help, which is often provided by informal caregivers, especially spouses. This might influence the relationship satisfaction in patients and their spousal caregivers. Additionally, previous studies have shown that a reduced relationship satisfaction may result in mental disorders and reduced physical health. Objectives & Methods: The aim of this study is to identify factors influencing PwPD and their caregivers’ relationship satisfaction in a cross-sectional observational study. Results: Analyses revealed an overall satisfying relationship, measured by the Quality of Marriage Index, in PwPD (n = 84) and their caregivers (n = 79). Relationship satisfaction in PwPD mildly decreased with reduced HR-QoL and more severe depressive symptoms. Reduced relationship satisfaction in caregivers was significantly associated with decreased HR-QoL, higher caregiver burden, more severe depressive symptoms and increased neuropsychiatric symptoms in PwPD. Conclusions: Further studies are needed to investigate the influence of the identified factors over time and if relationship satisfaction has a reciprocal impact on caregiver burden, HR-QoL as well as mental and physical health.

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Reciprocity between older adults and their care-givers in emigrant households of Kerala, India

Background: The felt obligation to return a benefit, termed reciprocity, has been identified as motivating care exchanges between older adults and their younger family members. Within the context of large-scale emigration of young adults from the Indian state of Kerala, this study examines how left-behind older adults and their family care-givers recognise, interpret and give meaning to reciprocal exchanges, expectations and obligations in their care relationship. Methods: Employing a social exchange perspective, we qualitatively explore the norm of reciprocity through in-depth interviews of 48 participants (older adults and their care-givers) from emigrant households. Findings: Older adults and their care-givers identified reciprocal notions in their care exchange relationship that provided an interpretive framework for describing expectations, motivations, obligations and experiences across care-giving relationships. Spousal care-givers derived reciprocal motives and mutual care obligations through the institution of marriage. Adult children recognised filial duties and responsibilities and were in principle prepared to provide care to their parents. Reciprocating the support received and the likelihood of intergenerational transfers motivated care exchanges from adult children to their older parents. Daughters-in-law executed transferred filial roles from their emigrant husbands and bore a larger burden of care. Primary adult care-givers relied on the 'demonstration effect', hoping that children observe the care-giving process and emulate it later. Conclusions: Imbalances and non-reciprocity in the care exchange led to frustrations and threatened the care relationships.

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Race and Gender Differences in Perceived Caregiver Availability for Community-Dwelling Middle-Aged and Older Adults

Purpose: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. Design and Methods: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants were asked if they believed that someone was available to provide care for them in the event of a serious illness or disability and, if so, to describe that person. Results: More than 80% of the participants reported having an available caregiver. Variables associated with lower perceived caregiver availability from a multivariable logistic regression analysis included being female, White, or unmarried; living alone; being older than 85; and having worse self-rated health. Spouses were the most likely caregivers for all racial and gender groups except for African American women, who identified daughters as the most likely caregivers. African American women also showed the smallest differential in perceived caregiver availability between married and unmarried (82.8% vs 75.7%), whereas White men showed the largest differential (90.9% vs 60.4%). Implications: Most individuals believe they have an informal caregiver available to them, but certain factors increase the risk of reporting no available caregiver. Increased efforts are needed to anticipate future caregiving needs, particularly for individuals who perceive a lack of available informal caregivers and may require more formal care services. 

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Profile and needs of primary informal caregivers of older patients in Belgian geriatric day hospitals: a multicentric cross-sectional study

Background: With the improvement of life expectancy, the world faces increasing demands for care of older persons. In this manuscript, we define the characteristics of primary informal caregivers (PIC) of patients aged 75 years and older admitted to geriatric day hospitals (GDH) in Belgium. A PIC is defined as the person who most often provides care and assistance to persons who need to be cared for. We describe PIC socio-demographic characteristics, satisfaction, burden and wishes about caring; the type of assistance provided and received, their self-rated health, socio-demographic and medical characteristics of proxies, in particular the presence of behavioural disorders. Methods: We conducted a cross-sectional study in 25 GDH. Participants Four hundred seventy-five PIC of patients ≥75 years and their proxies. PIC completed a questionnaire at the GDH assessing burden by Zarit Burden Index-12 (ZBI-12), self-rated health, social restriction due to caregiving and financial participation. We compared the characteristics of PIC with high and low burden, and the characteristics of spouses and adult children PIC. We also analyzed factors associated with a high burden in a multivariable logistic regression model. Results: PIC were mainly women (72%), adult children (53.8%) and spouses (30.6%). The mean age was 64 ± 14 years for PIC and 84 ± 5 years for care recipients. PIC helped for most of Activities in Daily Living (ADL) and Instrumental ADL (iADL). The median ZBI-12 score was 10 [IQR 5–18]. In multivariable regression analysis, a high burden was positively associated in the total group with living with the relative (p = 0.045), the difficulty to take leisure time or vacation (p < 0.001), behavioral and mood disorders (p < 0.001;p = 0.005), and was negatively associated with bathing the relative (p = 0.017) and a better subjective health status estimation (p < 0.001). Conclusion: Primary informal caregivers, who were predominantly women, were involved in care for ADL and iADL. A high burden was associated with living with the relative, the difficulty to take leisure time or vacation and the relative’s behavioral and mood disorders. Bathing the relative and a subjective health status estimated as good as or better than people the same age, were protective factors against a high burden.

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Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers

Background: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. Methods: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. Results: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. Conclusion: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.

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Non-spousal family support, marital status, and heart problems in adulthood

Background: Support from one's spouse has long been documented as a significant determinant of health for married individuals. However, non-spousal family support may play an important role in health particularly for unmarried individuals. Objectives: Therefore, this study examined whether the association between non-spousal family support and diagnosis of heart problems differed by marital status and whether gender and education moderated these associations. Results: Data came from the first two waves of the Midlife in the United States (MIDUS) study. This study selected respondents who participated in both waves of MIDUS and were not diagnosed with a heart problem at Wave 1 (N = 3,119). Participants reported whether they had any heart trouble. Discrete-time event history analysis was used to examine the risk of heart problems between MIDUS Waves 1 and 2. A higher level of non-spousal family support was associated with a lower risk of developing a heart problem only among unmarried women and unmarried individuals with high school education or less, and not for married individuals. Conclusions: Findings highlight the importance of considering specific sources of family support when studying heart health, and the health-protective role of non-spousal family support for those who are not married.

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Meaning through caregiving: A qualitative study of the experiences of informal carers

Background: This article reports the findings of a qualitative investigation of the way people find meaning through caregiving. Methods: It draws on the results of in-depth interviews with 37 informal carers and 11 stakeholders in Nottinghamshire, the United Kingdom. Findings: For most respondents caregiving involved looking after family members-for example, husband or wife, father or mother, young or adult children and mother-in-law. The meaning that respondents found through caregiving motivated them to cope with the difficulties associated with looking after a person in need. This research found that most informal carers operate with long-standing, gender-based understandings of their role, creating a potential risk that using gender-neutral terminology when referring to family members may obscure the subjective values that carers attach to informal caregiving and lead to role confusion. Moreover, although informal carers typically feel obliged to take care of family members in need and may value this role, they often require additional support from the state to reduce the pressures associated with caregiving and to enable them to continue to lead a meaningful life both within and beyond their caring role. 

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Institutionalization of older French adults with dementia: Role of the informal carer's degree of kinship

Background: The institutionalization of a patient with Alzheimer's disease or other dementia (ADOD) is the last resort for the latter's family and/or caregivers. We hypothesized that the degree of kinship between the patient and his/her caregiver would influence the likelihood of institutionalization. Objective: To assess the association between institutionalization of patients with ADOD and the degree of kinship with the family caregiver. Methods: A cross‐sectional study of patients with ADOD aged 75 or over attending a memory center in France for the first time between 2011 and 2014, as recorded in the French National Alzheimer Database. Multivariable logistic regression was used to assess factors associated with institutionalization after adjustment for age, sex, the Mini‐Mental State Examination score, educational level, and type of dementia. Results: A total of 52,874 patients were included. The primary caregiver was most often a child (54.8%) or the spouse (36.7%). Compared with the "spouse" reference category, all the other caregiver categories were associated with a significantly greater likelihood of institutionalization; the odds ratio [95% confidence interval] was 4.68 [3.67–5.92] when the carer was a grandchild, 5.48 [4.93–6.09] for a child, 4.93 [4.11–5.91] for a daughter‐/son‐in‐law, 8.76 [7.15–10.70] for a sibling, and 8.93 [7.48–10.65] for a niece/nephew. Conclusion: The likelihood of institutionalization of older patients with ADOD varied with the degree of kinship. Compared with the "spouse" reference category, the likelihood was higher for all other types of caregivers but was especially high when the caregiver was not a direct descendant of the patient.

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Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

Introduction: Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods: This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results: Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion: When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment. 

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Inclusion of relatives in stroke rehabilitation: Perception of quality of services they received in the context of early supported discharged (ESD), in- and out-patient services

Background: Relatives of stroke patients should be an integral part of the continuum of rehabilitation services. Objectives: The objective was to describe their perception of the quality of the services they received in the context of early supported discharged (ESD), in- and out-patient rehabilitation services. Methods: Descriptive study using the Quality of Services Questionnaire for Relatives post-stroke (QSQR) completed online by relatives after the patient's discharge. It consists of 22 statements with respect to three subscales: 1) the training/instructions, 2) the information provision and 3) the organizational process of the service offer. Space is allowed for free comments and two open-ended questions. Quantitative data were analyzed descriptively, and we used a content analysis for qualitative data. Results: One-third (30/90; 33.3%) of the sample are composed of relatives aged 55 and under, with a majority (81%) of women and 51.3% of spouses. The training/instructions and information provision were perceived positively with a mean % agreement at 85.0 ± 29.6 and 84.8 ± 22.4, respectively. The mean % agreement was 91.4 ± 17.8 for the organizational process subscale. A significantly higher score (p = 0,03; Kruskal Wallis test) was found for out-patient services (n = 20) as compared to ESD (n = 29) or in-patient rehabilitation (n = 41). Qualitatively, a lack of involvement of relatives was mentioned as well as a lack of personalized information about stroke and its consequences and provision of resources available. However, communication between professionals, their availability, and their professionalism were appreciated. Conclusions: Despite quantitative high scores, qualitative data allowed the identification of concrete avenues for improvement to truly and systematically include relatives in stroke rehabilitation.

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"I Am a Caregiver": Sense-making and Identity Construction through Online Caregiving Narratives

Background: The all-consuming role and responsibilities of providing care to an aging parent or spouse create identity disruption and stress. However, this stress may be resolved as family caregivers integrate the role of caregiver into their identity and construct an aspect of their identity around providing care (i.e., caregiver identity). Methods: Rooted in the retrospective heuristic of communicated narrative sense-making theory (CNSM), this paper investigates the identities family caregivers construct through online narratives about their caregiving experiences. Results: Using thematic narrative analysis to analyze a corpus of 40 online narratives, this study yielded four distinct caregiver identities: the prisoner, which is defined by a sense of being trapped by the responsibility of caregiving; the crumbling caregiver, which focuses on extreme exhaustion in providing care; the companionate caregiver, which focuses on the relational aspects of providing care; and the redeemed caregiver, which is defined by growth through difficulty.

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Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. Objectives: This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

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Family Caregiving and Place of Death: Insights From Cross-national Analysis of the Harmonized End-of-Life Data

Objectives: Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe. Method: We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home. Results: Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes. Discussion: This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.

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Family Caregiver Access of Online Medical Records: Findings from the Health Information National Trends Survey

Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions. Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers. One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers. However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states. The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.

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Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US

Background: Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Results: Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11 percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20 percent) and with those who have all children living far (23 percent). Conclusions: Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.

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Factors related to the use of religious coping by informal caregivers: an integrative review

Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.


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Exploring resilience in adult daughter and spousal carers of people living with dementia in North West England: an ecological approach

Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across spousal and adult daughter carers of PLWD. Design/methodology/approach: This study conducted in-depth qualitative interviews with a purposive sample of 13 carers from North West England and analysed the data using a constructivist grounded theory approach (Charmaz, 2003). Findings: Adult daughters were motivated to care out of reciprocity, whereas spouses were motivated to care out of marital duty. Spouses had a more positive and accepting attitude towards caregiving and were better able to maintain continuity, which facilitated their resilience. Research limitations/implications: Resilience emerged on multiple levels and depended on the type of kinship tie, which supports an ecological approach to resilience. The implications of these findings are discussed. Originality/value: This paper makes a novel contribution to the literature as it uses an in-depth qualitative methodology to compare resilience across spousal and adult daughter carers of PLWD. This study adopts an ecological approach to identify not just individual-level resilience resources but also interactive community- and societal-level resources. 

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Domains of quality of life in Alzheimer’s disease vary according to caregiver kinship

Introduction: Compared to other types of caregiver, spouse-caregivers tend to be closer to people with Alzheimer’s disease (PwAD) because of their different position in the relationship. We designed this study to compare the differences in caregivers’ quality of life (QoL) and domains of QoL according to the kinship relationship between the members of caregiving dyads. Methods: We assessed QoL of 98 PwAD and their family caregivers (spouse-caregivers, n = 49; adult children, n = 43; and others, n = 6). The PwAD and their caregivers completed questionnaires about their QoL, awareness of disease, cognition, severity of dementia, depression, and burden of caring. Results: The comparison between caregiver types showed that spouse-caregivers were older, with higher levels of burden and lower scores for cognition. Caregivers’ total QoL scores were not significantly different according to type of kinship. However, there were significant differences in the domains physical health (p = 0.04, Cohen’s d [d] = -0.42), marriage (p = 0.01, d = 1.31), and friends (p = 0.04, d = -0.41), and life as a whole showed a trend to difference (p = 0.08, d = -0.33). When QoL domains were analyzed within dyads, there were significant differences between members of spouse dyads in the domains energy (p = 0.01, d = -0.49), ability to do things for fun (p = 0.01, d = -0.48), and memory (p = 0.000, d = -1.07). For non-spouse dyads, there were significant differences between caregivers and PwAD for the QoL domains memory (p = 0.004, d = -0.63), marriage (p = 0.001, d = -0.72), friends (p = 0.001, d = -0.65), and ability to do chores (p = 0.000, d = -0.76). Conclusions: Differences were only detected between spouse/non-spouse-caregivers when QoL was analyzed by domains. We speculate that spouse and non-spouse caregivers have distinct assessments and perceptions of what is important to their QoL.

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Do informal caregivers experience more burnout? A meta-analytic study

Background: Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in terms of burnout. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Conclusion: Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals’ shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one’s role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual. 

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Differences in Burden Severity in Adult-Child Family Caregivers and Spousal Caregivers of Persons with Dementia

Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.

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A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

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Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Background: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. Methods: A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Findings: Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. Conclusions: The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.

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The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

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Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

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Caregivers of Frail Elders: Updating a National Profile

Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years. 

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Caregiver burden, work-family conflict, family-work conflict, and mental health of caregivers: A mediational longitudinal study

Background: Caregivers are responsible for the care of another, such as a young adult, disabled child, elderly parent, or sick spouse. Individuals who have caregiving responsibilities must blend the often-contradictory behavioural expectations from the different roles in which they reside. Methods: Building on the theoretical foundations of Conservation of Resources theory, this study tests a mediational model explicating the process through which caregiver burden impacts mental health through work-family conflict among a community sample of 1,007 unpaid caregivers in the greater Chicago area who responded to a mail survey at three time points. Results: Structural equation modelling analyses indicate strain-based conflict as being a consistent mediator between caregiver burden and mental health at baseline and two years later. These findings can inform practice and policy for workers with caregiving responsibilities.

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"At the End We Feel Forgotten": Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers

Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Results: Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Conclusions: Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.

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Actor and partner effects of self-rated health on life satisfaction among family caregiver couples

Objectives: This study examined the dyadic effects of self-rated health on the life satisfaction of family caregivers. The effects of the use of long-term care services were also explored to investigate whether support through care services is associated with the life satisfaction of family caregivers. Methods: The data were drawn from the sixth wave (2016) of the Korean Longitudinal Study of Aging. Caregivers who used long-term care services for older family members, and spouses of the caregivers, were identified. A total of 81 married caregiver couples were analyzed using the actor-partner interdependence model. Results: The study showed that better self-rated health of caregivers was associated with higher levels of life satisfaction (B = 8.87, p < 0.001). Better self-rated health of the caregivers was also associated with higher life satisfaction of their spouses (B = 6.01, p < 0.05). In addition, the results suggested that the use of long-term care services for patients was associated with the life satisfaction of both caregivers (B = 14.57, p < 0.01) and their spouses (B = 12.51, p < 0.05). Discussion: Our findings suggested mutual influences among family caregivers on their life satisfaction. In addition, long-term care services for patients may improve the life satisfaction of other family members. More support through long-term care services for people with care needs is required to increase the life satisfaction of family caregivers. The diverse relationships among family caregivers should be taken into consideration when developing policies and interventions.

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Women's Caregiving Experience of Older Persons Living With Alzheimer Disease and Related Dementias and Multiple Chronic Conditions: Using Wuest's Theory

Introduction Care of persons living with chronic conditions rests heavily on women within the context of the family. Research demonstrates that women experience more caregiving strain compared to men, yet less is known about the differences in experiences between women carers: namely, wives and daughters. Objective The purpose of this study was to examine and compare the experiences of wife and daughter carers of older adults living with Alzheimer disease and related dementias, plus at least two other chronic conditions. Methods Using qualitative description with Wuest's feminist caring theory of precarious ordering as an analytic framework, interview transcripts of women carer participants who were from the control group of a larger multi-site mixed methods study evaluating the web-based intervention My Tools 4 Care were analyzed. Findings Both wives and daughters experienced daily struggles, altered prospects, and ambivalent feelings around their caring role. Negotiating the role of professional carer was an important part of balancing caring demands and anticipating the future, and women took an active role in trying to harness caring resources. Findings indicated wives and daughters were generally similar in how they described their caregiving, although daughters reported more shared caring and decision-making, and needed to balance paid employment with caregiving. Conclusion Wives and daughters face similar challenges caring for persons with a dementia and multiple chronic conditions, and actively engage in strategies to manage caring demands. The findings illuminate the importance of accessible, appropriate support from professional carers/health care providers, and suggest that assistance navigating such supports would benefit women carers.

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Stigma associated with parental depression or cancer: Impact on spouse and offspring's cortisol levels and socioemotional functioning

Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study.

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Open communication between caregivers' and terminally ill cancer patients about illness and death: The role of gender - A correlational study

Purpose: Caregivers face severe difficulties in communicating openly with their terminally ill relatives about illness and death. Some studies suggest that females are more likely than males to hold such conversations. We compared level of open communication between male and female spouse-caregivers, and the contribution of personal and situational characteristics to the explanation of open communication level within each gender group. Methods: The study design was correlational. We interviewed 77 spousal-primary caregivers of terminal cancer patients. Participants were recruited over a 10-month period from the home hospice unit of the central region of Israel's largest Health Maintenance Organization. The questionnaire included measures of open communication, along with caregiver's personal and situational characteristics. Results: Female spouses reported higher levels of open communication about illness and death with their loved ones, compared to male spouses. Among males, duration of care and self-efficacy emerged as significant contributors to open communication level. Among females, self-efficacy and ethnic origin were found to be significant explanatory variables. Conclusions: This study demonstrates the important role gender plays in level of open communication between spousal caregivers and terminal cancer patients, concerning their illness and approaching death. Self-efficacy, ethnic origin and duration of care are also significant factors explaining open communication of both male and female caregivers. These factors should be considered by nurses and other healthcare professionals when developing intervention programs to increase the level of open communication between family caregivers and their terminally ill relatives.

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LEAVES (optimizing the mentaL health and resiliencE of older Adults that haVe lost thEir spouSe via blended, online therapy): Proposal for an Online Service Development and Evaluation

Background: Loss of a spouse is a frequent occurrence in later life. While most older adults successfully process this loss and will return to a normal life, about 10% of the individuals are unable to cope, and progress to prolonged grief (PG). PG, in turn, can result in mental and physical problems including poor sleep, cardiovascular problems, depression, and suicidal tendencies. Objective: LEAVES (optimizing the mentaL health and resiliencE of older Adults that haVe lost thEir spouSe via blended, online therapy) is an online bereavement program that will support the prevention and treatment of PG, so that elderly mourners can continue to lead an active, meaningful, and dignified life. LEAVES will cater to secondary end users (eg, family, informal caregivers) by reducing stress. Methods: LEAVES will help older adults to process the loss of a spouse in an online environment, which consists of (1) an existing online grief self-help program LIVIA, (2) the Before You Leave program that allows for storing personal memories, (3) a virtual agent platform, and (4) an accessible front-end design. LEAVES can detect persons at risk for complications, reveal negative trends in their emotional life, and act to counter such trends. The service relies on online support whenever possible but is blended with telephone or face-to-face counseling when necessary. Results: The project will take place between February 2020 and January 2023 and includes a real-life evaluation in which 315 end users will use the service across 3 countries (the Netherlands, Portugal, and Switzerland). The evaluation of LEAVES will focus on clinical effect, its business case, and technology acceptance. The results will pave the way for smooth integration into existing care paths and reimbursement schemes. Conclusions: The LEAVES service aims to soften the mourning process, prevents depression or social isolation, strengthens widow(er)s resilience and well-being, and quickens one's return to societal participation.

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International Development of the Alzheimer's Patient Partners Life Impact Questionnaire (APPLIQue)

Aim: Informal caregivers play a vital role in the care of people with Alzheimer's Disease (AD), yet caregiving is associated with caregivers' burden. The initial objective of the study was to develop a new outcome measure to assess quality of life (QoL) in AD caregivers. Methods: Informal (non-professional) caregivers providing 75% or more of the care activities for, and living in the same household as, a person with AD were invited to take part in the study. Qualitative interviews (N = 40) were conducted with AD caregivers in the UK and thematic analyses were applied to generate a pool of potential items. A draft questionnaire was produced and adapted for use in Italy, Spain, Germany and the US. In each of the 5 countries, cognitive debriefing interviews (N = 76) were conducted to determine the questionnaire's face and content validity, followed by a postal validation survey (N = 268). The data from these surveys were combined to reduce the number of items and assess the new questionnaire's psychometric properties. Results: Thematic analysis of the UK interview transcripts generated a draft questionnaire, which was successfully translated into each additional language. The items were well accepted and easy to complete. However, reanalysis of the qualitative interview data revealed that spousal and non-spousal caregivers identified different experiences of caregiving. A review of the item pool indicated that items were primarily targeted at spousal caregivers. Therefore, further analyses of the postal survey data included spousal caregivers only (n = 116). The results supported scaling assumptions (e.g., corrected item-total correlations >= 0.32), targeting (e.g., floor/ceiling effects <2.5%), internal consistency (alpha >= 0.93) and test-retest reliability (r(s) = 0.88) of the new questionnaire, according to classical test theory. Assessment of external construct validity yielded results in accordance with a priori expectations. QoL scores were most strongly related to scores on the emotional reactions sections of the Nottingham Health Profile and the General Well-Being Index. The new questionnaire was found to be capable of detecting meaningful differences between respondents; spousal caregivers had worse QoL when the person with AD was confused (p < .001), could not be left alone (p < .001), did not recognize the caregiver (p < .001), was incontinent (p < .05), and wandered around the house (p = .01). Conclusions: The Alzheimer's Disease Patient Partners Life Impact Questionnaire (APPLIQue) is a questionnaire specific to spousal caregivers of people with AD. Data support its scaling assumptions and it exhibits excellent psychometric properties according to classical test theory. The questionnaire is recommended for use in intervention studies where the QoL of spousal caregivers is of interest.

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Individual quality of life in spousal ALS patient-caregiver dyads

Background: Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment. Aim: To explore individual quality of life of people with ALS and their informal caregivers over time. Methods: Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results: Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased. Conclusion: The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.

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Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms

Study aims: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. Design & methods:This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). Results: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. Conclusions: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life. • Many spouses appeared to be weathering the stressors of end-of-life caregiving well. • 1 in 4 spouse/partner caregivers exhibited significant health problems. • Better active coping may help spouses adapt to caregiver role and preserve health. • Coping style and health during the caregiving period may impact the grief process. • Caregiving and bereavement should not be considered as isolated life phases. 

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The Caregiver

The young triathlete with brain metastases has rapidly become debilitated. But his wife, a cancer survivor, has a sagelike calm, born in part of experience volunteering with dying children. Her husband — and his oncologist — are fortunate to have such a caregiver.

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After the Burden Is Lifted: Caregivers' Recovery of Life Satisfaction After the Death or Recovery of a Spouse

Objective How does caregivers' life satisfaction shift upon the recovery of an ill spouse? Paradoxically, there is a greater increase in life satisfaction upon death than recovery of a spouse. Our analysis explores this paradox. Method We follow the two groups of exiting caregivers longitudinally for 4 years from when the partner is still in need of care until the death (N = 152) or recovery (N = 112) of a previously ill partner, comparing their trajectory of life satisfaction. We use the years 2001–2016 of the German-Socio-Economic Panel Study and a growth curve analysis. Results Contrary to our expectations, bereaved caregivers experience a significantly stronger increase in life satisfaction than spouses whose partners recover from a serious illness, even when we stratify by age, gender and initial life satisfaction to account for significantly different subsample composition. Surprisingly, life satisfaction remains unchanged when the partner recovers. Only if a heavy burden in terms of unpaid care and housework hours or prior care need is lifted, do we observe an increase in life satisfaction among spouses with recovering partners, which is like the one experienced by bereaved caregivers. Discussion More support for caregivers with high caregiving burdens may alleviate some of the strain associated with spousal caregiving, as—even if the partner dies—a decrease in spousal caregiving hours results in an uplift in life satisfaction.

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Factors Influencing Burden in Spouse-Caregivers of Patients with Chronic-Acquired Brain Injury

In this cross-sectional study, we assess associated factors of burden in spouse-caregivers of patients with acquired brain injury (ABI) in the chronic phase. 35 spouse-caregivers (71% female, mean age ± SD : 55.7 ± 11.1 y) of patients with mild/moderate ABI (29% female, mean age ± SD : 57.5 ± 10.7 y), admitted to the intensive rehabilitation unit of the Institute S. Anna (Crotone, Italy) between January 2013 and December 2017, were contacted 2 years postinjury and asked to complete a series of questionnaires. The outcome measure was the Caregiver Burden Inventory (CBI) test, while several demographical and clinical data were considered as predictive factors. Two years after injury, a high level of burden was reported in 34.2% of spouse-caregivers. Stepwise multiple linear regression analyses revealed that caring for a patient with more severe disability (as measured by the Barthel Index scale) and the family life cycle (from the initial phase of engagement to marriage with adult children) explain the vast majority of variance for higher caregiver burden. The functional clinical status and the stages through which a family may pass over time were identified as areas in which the spouse-caregiver of ABI patients experienced high levels of burden in the chronic phase. 

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"Why do you stay?": The lived‐experience of partners of Australian veterans and first responders with Posttraumatic Stress Disorder

This study examined the multidimensional nature of experiences of being an intimate partner of an Australian veteran or emergency service first responder (ESFR) with posttraumatic stress disorder (PTSD). Using a qualitative phenomenological approach, inductive thematic analysis was undertaken on data collected in 2017–2018 through individual interviews with a purposive sample of 22 partners of veterans, paramedics, fire and police officers living in Australia. Analysis revealed that the key concern of the participants was to protect their family unit and the intimate relationship, highlighting the ways in which they adapted, managed and coped with the changes that PTSD brought to the relationship. However, lack of understanding by healthcare providers, government, military and emergency service organizations of their daily lives, and of the strength of commitment to their relationship, resulted in a sense of invisibility and was revealed as the key barrier to the support they crave. The findings underscore the importance of recognizing the significance of the intimate relationship in trauma recovery and of responding to the support needs of the intimate partner. 

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When Cancer Survivors Become Cancer Caregivers: Psychosocial Effects on Couples (RP404)

Objectives Describe the psychosocial impact of being a cancer survivor caring for a spouse with an advanced cancer diagnosis. Compare the psychosocial outcomes of those experiencing dual roles of cancer survivor and cancer family caregiver. Importance. As early detection and treatment improves, more people become cancer survivors, making it increasingly common that survivors eventually care for a spouse also diagnosed with cancer. Understanding these relationships is crucial to understanding patient-caregiver dynamics. Objective(s). Describe the impact of advanced cancer caregivers' personal history of cancer on their own and the patients' psychosocial outcomes using quantitative and qualitative methods. Method(s). Eighty-eight advanced cancer patients and their spouse caregivers completed questionnaires. Caregivers also completed a brief qualitative interview about coping strategies. Data from dyads including caregivers with and without a personal history of cancer were compared. Results. Eleven caregivers were cancer survivors. These caregivers were mostly white (n¼10), 64 years old on average, and married for 30 years (SD¼9.32). There were no significant differences in demographics, anxiety, or depression between survivors and non-survivors. Survivors reported higher preparedness for caregiving than non-survivors (t¼2.479, p¼.01). Patients whose caregivers were survivors reported higher depression symptoms than patients whose caregivers were not survivors (B¼2.371, SE¼1.009, t¼2.349, p¼.021). During interviews, only 3 survivor caregivers referenced their own cancer. Survivor caregivers did, however, report drawing upon shared cancer experiences from other family members and support groups as a coping strategy. Conclusion(s). Caregivers' personal cancer history may give them tools to prepare for caring for a spouse with cancer. However, they may prefer to focus on the patient rather than their own past experiences. Patients with a survivor caregiver may report higher levels of depression because of their own prior experience with cancer as a caregiver. Caregivers also reported not speaking with the patient about their own cancer experience, suggesting avoidance and/or a desire to avoid upsetting the patient by bringing up their own concerns. Impact. Cancer survivorship may impact caregiving for others with a cancer diagnosis. More research is needed to understand this relationship.

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Psychosocial Distress in Women With Breast Cancer and Their Partners and Its Impact on Supportive Care Needs in Partners

Objectives: While both patients and informal caregivers report high levels of cancer-related distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners.; Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34).; Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress ( p = 0.02), whereas patients (self-assessment) indicated stronger needs for help ( p < 0.001). Men with higher levels of distress were younger ( p < 0.001), and reported a shorter relationship duration ( p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain.; Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions. 

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Positive and negative experiences and life satisfaction among spousal caregivers for frail older adults in urban China: a parallel process model

Objectives Previous literature has suggested that negative and positive aspects of spousal caregiving co-exist. However, positive and negative experiences were often examined independently. This study aimed to empirically test a parallel process model of spousal caregiving. Methods This cross-sectional survey of family caregiving involved 269 frail older adults living in Shanghai, China, in 2016. Quota sampling was conducted to find community-dwelling frail older adults with a primary caregiver. Path analysis was used to identify the relationship between negative and positive caregiving experiences and life satisfaction. Results We found two independent paths towards life satisfaction: (i) activities of daily living were negatively associated with burden, and burden was associated with lower life satisfaction; and (ii) spousal caregivers' self-reported health and financial state were positively associated with positive appraisal, and positive appraisal was associated with higher life satisfaction. Caregiving time contributed to both aspects of caregiving experiences. The covariance between caregiving burden and positive appraisals was not statistically significant. Conclusion Spousal caregiving involves a parallel process. Negative and positive experiences are separate constructs and their associations with life satisfaction vary. We advocate for policy and interventions that promote positive views of caregiving that encourage caregivers to develop a high level of overall life satisfaction despite the hardships of their caregiving tasks. 

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Partners' Attachment Styles and Overprotective Support as Predictors of Patient Outcomes in Cardiac Rehabilitation

Objective: This study investigates whether the adult attachment styles of support partners in a cardiac rehabilitation context predict their use of overprotective support strategies, and whether such overprotection in turn predicts lower self-efficacy and poorer program attendance in cardiac rehabilitation patients. Research Method: Participants were 69 partner–patient dyads, mostly older adults (mean age = 65 years) in long-term relationships (M = 35 years). During the first week of a 10-week cardiac rehabilitation program in a midsized rural hospital, participants completed self-report questionnaires that were used to assess partners' attachment styles and levels of overprotection, as well as patients' health-related self-efficacy. Attendance at each session of the program was then tracked by cardiac rehabilitation staff members. Results: A moderated mediation model using bootstrapping showed that when partners were insecurely attached (high in both attachment avoidance and attachment anxiety), a mediational model held, such that more insecure partner attachment predicted more extensive use of overprotective support strategies, which in turn predicted lower patient self-efficacy for exercise and less-frequent program attendance. Implications: Implications for training support partners in more-effective support strategies are discussed. Impact and Implications: This article identifies support partners' attachment insecurity as a potential risk factor for offering overprotective support in a cardiac rehabilitation context; demonstrates that partners' attachment styles are associated with their use of support strategies, which in turn are associated with important patient outcomes, assessed via self-report (self-efficacy) and objective measures (program attendance); and responds to a call to better understand the dynamics of more-effective versus less-effective partner support strategies, as a means to improve training. Awareness of these dynamics may help to train partners in use of more effective support strategies, and/or help buffer patients when they receive less-effective forms of support. 

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Mastery and Longevity in Spousal Caregivers of Persons with Dementia

Objective Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia. Methods This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment. Results Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65). Conclusions Findings have implications for support programs that help build personal mastery. 

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The pains and reliefs of the transitions into and out of spousal caregiving. A cross-national comparison of the health consequences of caregiving by gender

Spousal caregiving offers a unique opportunity to investigate how gender shapes the influence of care responsibilities on health at older ages. However, empirical evidence supporting a causal link between the transitions into and out of caregiving and health is mixed. This study investigates the influence of spousal care transitions on the health of older men and women living in 17 European countries. We use five waves of the Survey of Health, Ageing and Retirement in Europe (SHARE) between the years 2004 and 2015 for a total of 43,435 individuals and 117,831 observations. Health is defined as a Frailty Index calculated from 40 items. Caregiving is defined as intensive help with personal care provided to spouses. Results from asymmetric fixed-effects linear regression models show that the transitions into caregiving have a detrimental effect on health. On the contrary, the transitions out of caregiving have in most cases no beneficial consequences on health. Most importantly, we found evidence supporting differential effects of caregiving transitions by gender and welfare arrangement: the transitions out of caregiving are associated with better health conditions only for Southern and Eastern European women. Our study highlights the asymmetric and gendered nature of care transitions and suggests that the impact of caregiving is somewhat permanent and has long lasting effects for the caregiver. Policies should account for this asymmetry when assessing the impact and consequences of caregiving.

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Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study

Objectives Motor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing. Design Qualitative: focus groups, interviews and carer workshops.Setting Three UK MND specialist centres serving a wide range of areas. Participants Stage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years. Results Carers described challenges of a disease that was terminal from the outset, of ‘chasing’ progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both ‘enabling’ domains which identify carers’ needs as co-workers as well as carers’ ‘direct’ needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers. Conclusions Carers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.

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Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis

Background and objectives: Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver's aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough's Weight of Evidence and Morgan's Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) "Embodied impact of care" whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) "Caregiving spouse's conceptualisation of their role" in which caregiver's navigated their self and marriage identities in relation to their partner's condition and expectations about gender and place; 3) "Learning to care" which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity. 

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The Experiences of Couples Affected by Stroke and Nurses Managing Patient Rehabilitation: A Descriptive Study in Singapore

Background: Stroke in a family affects both patients and their spousal caregivers. Despite advances in the medical management of stroke, less is known about the social and cultural factors that impact couples regarding stroke recovery. Purpose: The purpose of this study was to explore the experiences of stroke from the perspectives of couples affected by stroke and the nurses managing patient rehabilitation. Methods: An interpretive descriptive study was conducted. Purposive sampling was used to enroll 17 participants, comprising eight nurses, five spousal caregivers, and four stroke survivors. Individual, in-depth interviews were performed at a rehabilitation hospital in Singapore in June 2018. Results: The primary theme was the diverse meanings of stroke recovery attributed to limited conversations about the care decisions made by couples and rehabilitation nurses. The second theme was the challenges in nursing responsibilities that hindered the recovery of patients with stroke. Conclusions/Implications for Practice: The meaning of recovery differs between patients and their informal and formal care providers. This issue should be explored in patient–provider conversations, as these conversations highlight the values and preferences that affect the stroke recovery trajectory. Enhancing shared decision making by patients, spousal caregivers, and healthcare providers during the stroke trajectory may promote the alignment of values that are critical to the stroke recovery experience. Further research into whether and how to incorporate shared decision making in rehabilitation hospital settings as an interventional component is warranted to better support stroke survivors before discharge. 

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Examining the support needs of older male spousal caregivers of people with a long‐term condition: A systematic review of the literature

Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.

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Emotional Burden and Perceived Social Support in Male Partners of Women with Cancer

Background: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis.; Methods: A cross-sectional, longitudinal and observational study was conducted on a group of 61 couples, with the use of Zarit Burden Interview (ZBI), Caregiver Burden Scale (CBS), Berlín Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). Statistical analysis was performed using Statistica v.13.; Results: A strong positive correlation between the ZBI and CBS, as well as between support-seeking and the emotional involvement of male partners, was documented. The negative correlation between the lack of instrumental support and a much greater burden on caregivers, in emotional, social, and family life was documented. The level of distress, anxiety, and depression, as well as family problems reported by female patients, were positively correlated with the male caregiver's burden. A demographic analysis showed significant relationships between the number of offspring and the negative health indicators of patients and their partners.; Implications: The obtained results encourage deeper reflection on the need to improve the availability of instrumental support for male caregivers and support for families with an oncological ill parent in caring for minor children, and to maintain the social activity of the caregiver.

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Effects of Psychosocial Interventions and Caregiving Stress on Cardiovascular Biomarkers in Family Dementia Caregivers: The UCSD Pleasant Events Program (PEP) Randomized Controlled Trial

Background: This study examined whether biological mechanisms linking dementia caregiving with an increased risk of coronary heart disease can be modified by psychosocial interventions and which caregivers might benefit the most from an intervention. Methods: Spousal dementia caregivers were randomized to 12-week treatment with either a behavioral activation intervention (ie, Pleasant Events Program [PEP]; n = 60), or an active control Information and Support (IS; n = 63) condition. Indicators of caregiving stress were assessed pretreatment and circulating cardiovascular biomarkers were measured pre- and posttreatment. Results: There were no significant changes in biomarker levels from pre- to posttreatment both by treatment condition and across all caregivers. Regardless of the treatment condition, exploratory regression analysis revealed that caregivers were more likely to show significant decreases in C-reactive protein (CRP) and D-dimer when their spouse had severe functional impairment; in interleukin (IL)-6 and CRP when they had greater distress due to care recipient's problem behaviors; in tumor necrosis factor (TNF)-α when they had higher levels of negative affect; and in IL-6, CRP, TNF-α, and D-dimer when they had higher personal mastery. Within the PEP group, caregivers with higher negative affect and those with higher positive affect were more likely to show a reduction in von Willebrand factor and D-dimer, respectively. Within the IS group, caregivers whose spouse had severe functional impairment were more likely to show a decrease in IL-6. Conclusions: Unlike the average caregiver, caregivers high in burden/distress and resources might benefit from psychosocial interventions to improve cardiovascular risk, although these observations need confirmation. 

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Caring for a spouse with advanced cancer: similarities and differences for male and female caregivers

Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health. 

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Caregiver perceptions in caring for post-stroke patients in Palopo City, South Sulawesi

The general aim of this study is to identify the events experienced by the caregiver (the husband/wife) in providing care to the post-stroke partner in Palopo City, South Sulawesi. This study is qualitative research using phenomenology design. Qualitative study is conducted to find out certain reasons on a topic or to understand the occurrence of a topic. The focus of the phenomenological approach is on the essence or event experienced by the participants. The results were processed using NVivo 10; and in terms of feelings, it was obtained the feeling of heavy-hearted, angry, disappointment, pity, sadness, and normal. The role of the caregivers undergoes either changes or no changes. The way of coping with the feelings is by accepting the conditions, calming down, talking to others, support from the children, the daughters, and other family members, praying, and even letting go of the burden. The caregiver overcomes the changes in terms of role by managing time and handling the situation like it used to. Based on the result of the interviews as well as the data analysis, a number of subthemes were found related to feelings, role and ways of overcoming.

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Predictors of caregiver distress among spouses, adult children living with the person with dementia, and adult children not living with the person with dementia

Aim The caregiving situation differs according to the type of relationship between the patient caregiver, and among dementia caregivers, living with the person with dementia can contribute to caregiver distress. This study aimed to identify the predictors of caregiver distress based on caregiver profile: spouse, adult child living with the person with dementia, and adult child not living with the person with dementia. Method In total, 213 caregivers participated in this study. Their responses to questionnaires helped identify the positive and negative implications of the caregiving situation and the level of caregiver distress. The analyses consisted of univariate and multiple linear regression models using a forward method. Results Based on the standardized beta scores, the variables that are the most significant in predicting spouse caregiver distress are the impact on health and impact on schedule. The variable that is the most significant in predicting the distress of adult child caregivers living with the person with dementia is the impact on health. The variables that are the most significant in predicting the distress of adult child caregivers not living with the person with dementia are the impact on health, impact on schedule, and impact on finances. Conclusion The results make it possible to consider different approaches to providing support, including evaluating the health of all caregivers, giving guidance on accepting help and focusing caregivers' actions on their values for spouse caregivers, providing family mediation for adult child caregivers living with the person with dementia, and offering information and assistance on the available aids for adult child caregivers not living with the person with dementia.

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Can We Hit Two Birds with One Stone: An Effectiveness Study of Peer-support Groups for Low-income Spousal and Adult Children Caregivers of Hong Kong Older Adults

This study aims to assess the effectiveness of peer support groups for low-income older adults’ caregivers in the Hong Kong community. It compares the effectiveness of peer support groups on spouse and adult children caregivers. The peer support program was structured into three stages, including six training sessions for peer specialists, eight caregiver support group sessions, and non-structured informal contact. The study adopted a quasi-experiment design supplemented with qualitative data collected from focused group interviews. It involved a user group of 58 participants and a control group of 42 participants. Both quantitative and qualitative data were collected before, after the peer support groups, and at a three-month follow-up. The quantitative results showed that the peer support program was more effective in promoting social support for adult children caregivers but not for spousal caregivers. Three focus group interviews suggested that the community-based peer-support group could be helpful to improve stress management, emotional regulation skills, and social networks of the caregivers. Based on the research findings, we discuss the various needs of spousal and adult children caregivers, provide recommendations for service providers and practitioners to consider homogenous group services to address the diverse needs of spousal and adult children caregivers. 

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A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

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Spousal bereavement after dementia caregiving: A turning point for immune health

Losing a spouse can increase the risk for premature mortality, and declines in immune health are thought to play a role. Most of the supporting data have come from cross-sectional studies comparing already-bereaved individuals to matched controls, which provides valuable information about health disparities between groups but does not reveal health changes over time. Moreover, the health consequences of bereavement may be unique for dementia family caregivers, a large and growing segment of the population. The current study sought to evaluate the course of health around 52 dementia spousal caregivers’ bereavement by capturing lymphocyte proliferation to Con A and PHA and self-rated health before and after spousal loss. To investigate the moderating role of the social environment, we examined associations between social ties and health trajectories before and after spousal loss. Using piecewise linear mixed models to allow for turning points in caregivers’ trajectories, we found that, for the average caregiver, lymphocyte proliferation to both mitogens weakened as bereavement neared and continued to decline after the loss, but at a slower pace. In tandem, perceived health degraded as bereavement approached but rebounded thereafter. Further, we found that socially isolated caregivers showed marked declines in immune responses to Con A and PHA over time both before and after bereavement, whereas their socially connected counterparts had shallower declines to PHA and maintained a level immune response to Con A. In addition, socially isolated caregivers reported poorer health before and after bereavement compared to their counterparts, whose self-rated health declined as the loss neared but later recovered to exceed prior levels. These findings shed new light on the dynamics of immune function in response to spousal bereavement after dementia caregiving: longitudinal data reveal a pattern of health recovery following caregivers’ loss, particularly among those with more robust social networks prior to bereavement. 

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Lived Experience of Spouses of Persons with Motor Neuron Disease: Preliminary Findings through Interpretative Phenomenological Analysis

Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis. Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND. Methods: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews. Results: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one. Conclusion: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.

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Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: Relational commitment, caregiving burden, and prorelational behavioral tendencies

Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction). 

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The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple. Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method: The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings: One overarching theme arose: Dementia preserved and challenged the value of “us.” It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion: Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long- versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice: When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit – as an “us” – where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship). 

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Spousal Caregiving in Community Settings in Canada: Implications for Nursing Professionals

Objective: Spousal caregivers report significantly more health effects and psychological consequences than caregivers of aging parents. Traditional approaches to assist these caregivers often include lifestyle approaches with a lack of health promotion initiatives. Consequently, alternative approaches to facilitate the adaptation to the social context of spousal caregivers' experiences are needed. Method: This article systematically reviewed literature on spousal caregiving in Canada using a health promotion approach. Nine peer reviewed articles were identified from the health and social care literature and critically analyzed for relevant themes. Results: Gender, social support, health care, and income emerged as themes in the literature published to date. Discussion: The article concludes with directions for future research in Canada and suggested solutions for family nursing practice.

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The lived experience of supporting people with mild stroke

Background: Mild stroke occurrences are rising and in order to comprehensively understand the experience of this health phenomenon, the context in which people with mild stroke live must be explored. Spouses are an important part of the lives of this population, but their experiences are yet to be fully understood. Aims/Objectives: To answer the question: “What is the essence of the mild stroke experience from the perspective of spouses during the first 9-months after acute hospital discharge, in Australia?” Materials and Methods: Qualitative study involving four spouses at 9-months post-acute hospital discharge for their family member. Interpretative phenomenological analysis used to analyze interview transcripts. Results: Two themes identified: (1) Activities gained but time lost, and (2) Small changes but big impacts. The first theme portrays the increase in daily activity that spouses experienced due to caregiving related activities, which impacted on their occupational participation. The second highlights the impact that people with mild strokes’ behavioral and emotional changes can have on spouses. Conclusions and Significance: Whilst spouses generally return to their daily routines after a family members’ mild stroke, some will experience increased time pressures and occupational disruptions. Health providers should prepare spouses for behavioral and emotional changes in people with mild stroke. 

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Experiences of spouses of patients with cancer from the notification of palliative chemotherapy discontinuation to bereavement: A qualitative study

Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement. Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach. Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“ Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers. 

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“I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience

There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear. How do the parents without YOD understand and negotiate their ever-changing parenting role, and how do their children experience it? We conducted in-depth, semi-structured interviews with four parents without YOD (coincidentally all mothers) and eight children ages 16–20 (3–18 when parent was diagnosed) regarding the changing nature of the parental-child relationship. These data were analyzed using thematic narrative analysis, in which respondents' material is closely read as it is gathered and analyzed for patterns. Three primary themes emerged. First, there are significant changes in family structures and role. Mothers increasingly assume all parental responsability. Children assume roles of carers and earners, and at times reluctant decision-making partners. Such responsabilities can feel overwhelming at times. However, the children discribed not wanting to burden mother with their feelings and experience, a second prominent theme. Finally, such muting of their experience likely contributes to mothers feeling they are managing the YOD so as to minimize the impact on their children, creating divergent experiences of the YOD on family life. Facilitating family members' articulation of what feel like “inadmissible” feelings, improving familial communication, and developing a range of support and resources are all important areas for intervention. 

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Vietnamese Adult-Child and Spousal Caregivers of Older Adults in Houston, Texas: Results from the Vietnamese Aging and Care Survey (VACS)

Vietnamese are the largest Asian ethnic group in Houston, Texas; however, research on this population is scarce. To address this dearth of knowledge, we developed the Vietnamese Aging and Care Survey. The objective of the study was to explore the sociodemographic and health characteristics of Vietnamese adults aged 65 years and older (n = 132) and their family caregivers (n = 64). Adult-child caregivers (n = 41) were aged between 21 and 65 years old. The majority were married, working, female, and in good to excellent health. Spousal caregivers (n = 23) were between 57 and 82 years old, retired, female, and in fair to good health. Adult children received more caregiving-related help from others compared to spousal caregivers; however, they felt more caregiver burden, had more perceived stress, and were in challenging relationships with care recipients. Differences in life stages of adult-child versus spousal caregivers may contribute to these results. Implications are discussed.

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"Like He's a Kid": Relationality, Family Caregiving, and Alzheimer's Disease

Spousal caregivers draw upon understandings of shifting relationality to maintain a familial understanding of their spouse with Alzheimer's disease. Working through what it means to think of an adult with Alzheimer's disease "like a child," I trace how spouses negotiate their shifting relationships across the course of Alzheimer's. While regarding adults as childlike can be perceived as dehumanizing infantilization, for families living with Alzheimer's disease, conceiving of one's spouse as like a child can actually enable processes of continued care, sustained recognition, and love to uphold personhood in the midst of often radical change.

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Die häusliche Situation eines Ehepaares Challenges in dementia care at home - The situation at home of a married couple

Background: People with dementia and their relatives are faced with major challenges due to complex dementia symptoms. Families need information and counselling in order to find adequate dementia care services tailored to their needs. Aim: This case report's objective is to exemplify the domestic situation of a married couple who is faced with significant challenges within the family and the care system due to the husband's dementia and Parkinson's disease. Methods: The Dementia Care Nurse project included case monitoring; by means of different assessments relevant information was recorded and the family's situation described. Results: The family's problems and their need for support were multifaceted and entailed reimbursement of costs, application for care services as well as management of challenging behaviours and reduction of the caregiver's psychosocial burden. Conclusions: The family, particularly the spouse caregiver, was effectively supported in meeting the challenges of dementia, e. g. by drawing on professional services and sorting out entitlement to benefits. From the perspective of the experience in the project, independent counselling structures such as a case management approach are indispenable in order to stabilise the domestic situation.

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Depressive Symptoms After Ischemic Stroke: Population-Based Comparisons of Patients and Caregivers With Matched Controls

Background and Purpose- Persistent depression after ischemic stroke is common in stroke survivors and may be even higher in family caregivers, but few studies have examined depressive symptom levels and their predictors in patient and caregiver groups simultaneously. Methods- Stroke survivors and their family caregivers (205 dyads) were enrolled from the national REGARDS study (Reasons for Geographic and Racial Differences in Stroke) into the CARES study (Caring for Adults Recovering from the Effects of Stroke) ≈9 months after a first-time ischemic stroke. Demographically matched stroke-free dyads (N=205) were also enrolled. Participants were interviewed by telephone, and depressive symptoms were assessed with the 20-item Center for Epidemiological Studies-Depression scale. Results- Significant elevations in depressive symptoms (Ps<0.03) were observed for stroke survivors (M=8.38) and for their family caregivers (M=6.42) relative to their matched controls (Ms=5.18 and 4.62, respectively). Stroke survivors reported more symptoms of depression than their caregivers (P=0.008). No race or sex differences were found, but differential prediction of depressive symptom levels was found across patients and caregivers. Younger age and having an older caregiver were associated with more depressive symptoms in stroke survivors while being a spouse caregiver and reporting fewer positive aspects of caregiving were associated with more depressive symptoms in caregivers. The percentage of caregivers at risk for clinically significant depression was lower in this population-based sample (12%) than in previous studies of caregivers from convenience or clinical samples. Conclusions- High depressive symptom levels are common 9 months after first-time ischemic strokes for stroke survivors and family caregivers, but rates of depressive symptoms at risk for clinical depression were lower for caregivers than previously reported. Predictors of depression differ for patients and caregivers, and standards of care should incorporate family caregiving factors.

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Coping with cognitive impairment and family caregiving: Introduction to the special section

Consistent with the long history within Psychology and Aging of publishing high impact articles on family caregiving, the current Special Section includes 5 articles that provide important advances, in knowledge and in methodological sophistication, to the study of cognitive difficulty, impairment and family caregiving. One study used daily diary data over 14 days to conduct microlongitudinal analyses of the prospective impact of everyday memory failures on negative affect and marital interactions in older couples. Also relying on dyadic data, 2 other articles addressed the impact of caregiving on family members, including a study of the effects of transitioning to family caregiving over time on well-being in older husbands and wives, and a comparison of primary and secondary caregivers. Together, these articles represent important methodological advances in terms of the use of longitudinal data to study the effects of transition to cognitive impairment and spousal caregiving within the couple, and the inclusion of multiple caregivers to illustrate the impacts of caregiving in the broader family. In addition, two articles examined issues in clinical intervention for caregivers. Both articles offer new insights about the effectiveness of caregiver interventions, with the former focusing on the relative merits of offering intervention components in a flexible way over the manualized approach, and the latter a comprehensive systematic review and meta-analysis to tease out the relative utility of different intervention characteristics and approaches, with a new lens to look at psychoeducational programs. The implications of these articles for family caregiving and further research advances are discussed. 

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Buffer or Blade: Perceived relationship closeness in couples navigating Alzheimer's

Given the paucity of support from the welfare state, the lion's share of care for American seniors with memory loss is shouldered by their spouses who tend to be older and sometimes are frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of sometimes half-century long relationships. The present study was a qualitative investigation of 11 community-dwelling dyads (N = 22) living in the Greater Boston Area to understand how married heterosexual couples experience Alzheimer's. They were predominately white, highly educated individuals with mild to moderate AD and their spouses. Grounded theory methodologies were used to collect, code, and analyze all narrative study data. The data from these spousal dyads reveal that most couples approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches, and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in our social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer's. Despite being a highly privileged sample, or an “ideal type,” these data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem. They also highlight the importance of relationship-centered care in meeting families “where they are” in terms of existing social roles. Universalizing all AD experiences leads to an over-reliance on reductionist tropes such as “stress” and “burden” and exacerbates the very real threat to social disenfranchisement. 

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Attributes of caregivers' quality of life: A perspective comparison between spousal and non-spousal caregivers of older patients with cancer

Purpose: With the aging population, our current understanding of patients with cancer and their family caregivers needs to be expanded to older patients with cancer and their caregivers. By differentiating spousal caregivers and non-spousal caregivers, we aimed to investigate the universalities and particularities of caregiving for older patients with cancer.; Methods: Through 11 cancer centers in South Korea, 358 patient-caregiver pairs were recruited in this cross-sectional study. Patients were of gastric, colorectal, or lung cancers, and caregivers were those who accompanied the patients to the clinic. Along with socio-demographic variables, medical records of the patients, and caregiving-related measurements, the caregiver's quality of life (AC-QOL) was rated both by patients and by caregivers.; Results: Statistically significant attributes of ACQOL included patient's age, caregiving duration, caregiver's concern about financial burden, caregiver's self-evaluation of their own physical health, and work conflicts due to caregiving for spousal caregivers (R2 = 0.687). For non-spousal caregivers, caregiving duration, caregiver's concern about financial burden, caregiver's self-evaluation of their own physical health, and family conflicts due to work were found significant (R2 = 0.272). Also patients rated ACQOL in higher accordance with their spousal caregivers than with non-spousal caregivers.; Conclusion: The needs of spousal caregivers and non-spousal caregivers might vary, which should inform the effective and efficient channeling of support for family caregivers. Future research suggestions, along with the study limitations, are discussed.

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What is an older husband's experience of caring for his wife who has dementia?

A significant number of informal carers look after people who have dementia. Women's caring experiences are well documented. However, a substantially smaller amount of research exists specifically investigating the male carer perspective. This literature review explores older husbands' experiences of caring for their wives who have dementia. The findings suggest that husbands are committed to their caring role but can feel socially isolated. The caring role of older men has altered the dynamic in the marriage. Husbands continue to show commitment towards their spouses but feel that male-only support groups could offer some respite from their responsibilities. Nurses need to take time to listen to husbands' experiences, offering emotional support and signposting them to other services. Further research on the long-term effects and support needs of older male carers is needed.

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Synergistic Dependencies in Partner and Elder Abuse

Although dependency in its various forms has been widely studied, most investigations examine manifestations of dependency within individuals. Scrutiny of the literature reveals that synergistic dependencies—situations wherein both members of a dyad manifest excessive dependency of one form or another—play a role in some forms of partner and elder abuse. High levels of interpersonal or economic dependency in a woman coupled with high levels of interpersonal dependency in her male partner increase the likelihood of partner abuse. When family member caregivers are economically dependent on a functionally dependent older adult, risk for elder abuse increases. Although these synergistic dependencies differ across abuse domains, two prevailing themes emerge. The interpersonal, economic, and functional dependencies of abused partners and older adults are associated with feelings of helplessness, powerlessness, and an inability to challenge the abuser. The common dependency-related dynamic in perpetrators of abuse is fear—fear of abandonment leading to partner abuse, and fear of loss of financial support increasing risk for elder abuse. 

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A Scoping Review of Literature on Sex and Gender Differences Among Dementia Spousal Caregivers

Background and Objectives Sex and gender differences among dementia spousal caregivers have been investigated, but never systematically reviewed or synthesized. A synthesis of findings can help facilitate specificity in practice and in health policy development. As a first step towards such a synthesis, this scoping review reports the available evidence, identifies research gaps, and suggests possible directions for future research. Research Design and Methods A scoping review methodology was used to identify articles, and to chart and analyze data. Systematic searches for published, empirical studies, with an explicit goal or hypothesis related to sex or gender differences were conducted in seven databases. Results Sixty-one studies met inclusion criteria. Most (n = 45) were quantitative, cross-sectional studies. Caregivers included in the studies were generally 61–70 years old, Caucasian, middle-class, and highly educated. The most extensively investigated differences are: depression, burden, objective physical health, and informal supports. Discussion and Implications This scoping review is the first to summarize and critique the research on sex and gender differences that are specific to dementia spousal caregivers. The review can be used by researchers to make decisions regarding future systematic reviews and primary studies. To further strengthen the evidence base, future studies may benefit from including more caregivers of ethnic minorities, using more qualitative, longitudinal, or experimental designs, and focusing on variables needed to inform caregiving models and theories. Overall, this scoping review contributes to furthering gender-sensitive practices and policies that are better tailored to the specific needs of this population. 

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A Pilot Trial of Online Training for Family Well-Being and Veteran Treatment Initiation for PTSD

Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.

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Patient-family communication mediates the relation between family hardiness and caregiver positivity: Exploring the moderating role of caregiver depression and anxiety

Purpose: Despite the theoretical and empirical significance of positive aspects of caregiving in caregiver well-being, relatively little is known regarding family-related predictors of caregiver positivity. This study examines whether patient-family communication (p-f communication) mediates the relation between family hardiness and caregiver positivity and whether the mediating effects of p-f communication are moderated by the levels of caregiver depression and anxiety. Design/Sample: This study used secondary data obtained from a large-scale cross-sectional national survey conducted in South Korea. Participants were 544 spousal cancer patient-caregiver dyads recruited from the National Cancer Center and nine government-designated regional cancer centers in South Korea. Methods: To test the hypotheses, a simple mediation model and two moderated mediation tests were conducted using the PROCESS macro for SPSS. Findings: Higher family hardiness was related to higher p-f positive communication and higher caregiver positivity. The effects of family hardiness were partially mediated by p-f communication, controlling for caregiver sex, education, health status, depression and anxiety, time spent caregiving, and patient depression and anxiety, cancer stage, and time since diagnosis. The mediating effects of p-f communication were not significantly moderated by caregiver depression and anxiety. Conclusions/Implications: Health care professionals could consider p-f communication as a reasonable target of intervention to increase caregiver positivity, even for caregivers with heightened depression and anxiety.

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A mixed methods inquiry of caregivers of U.S. veterans with sustained "invisible" injuries from Iraq/Afghanistan

An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = −2.36, p =.02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p <.01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers. 

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Male and Female Partner-Caregivers' Burden: Does It Get Worse Over Time?

Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. 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-caregivers, 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 caregivers, 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. 

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Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review

Background and Objectives Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers' coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviors was related to carers' depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area. 

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Chinese American Family Caregivers' Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers' perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers' perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers. 

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175 A Dyadic Approach to Life-Threatening Illness in Older Adults and their Spouse Carers

Background Little research focuses on the older adult with life-threatening illness and their carer simultaneously, nor the role of the interpersonal and familial context around them. The purpose of this study was to identify factors associated with poor mental health and lack of shared appraisal of symptoms. Methods Multilevel modeling was used to examine cross-sectional data from 135 older adult-spouse carer dyads with life-threatening illness (59 with congestive heart failure and 76 with lung cancer). This was a secondary analysis of quantitative data from two studies. Data were gathered using established measures of symptoms (dyspnoea, fatigue, pain), depression, concealment, relationship quality and family support with in-person interviews conducted separately for older adults and their carers. Diagnosis and stage of disease were gathered from clinical records. Results Older adults with heart failure reported significantly more depressive symptoms than older adults with lung cancer, whereas spouses caring for someone with heart failure reported significantly less depressive symptoms than those caring for someone with lung cancer. Greater levels of spouse depressive symptoms were significantly associated with less shared appraisal of the older adult's fatigue and pain interference, controlling for the quality of the relationship between them. Finally, risk factors for higher depressive symptoms of older adults included higher levels of concealing symptoms and worries from their spouse, advanced stage of disease, reporting low relationship quality and low levels of support from family. Risk factors for higher depressive symptoms of spouse carers included being younger and reporting low support from family. Conclusion Findings highlight the importance of taking a dyadic approach to life-threatening illness in older adults and the role of interpersonal and familial variables on the mental health of both members. Interventions to support and strengthen relationships and communication and address depressive symptoms of both members of the dyad are warranted.

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Psychological interventions targeting partners of cancer patients: A systematic review

Purpose: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. Methods: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. Results: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. Conclusion: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.

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Addressing cancer patient and caregiver role transitions during home hospice nursing care

Objective Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. Method A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. Result Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. Significance of results Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

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Enhancing the cancer caregiving experience: Building resilience through role adjustment and mutuality

Purpose: The purpose of this study was to explore the dyadic experience of caring for a family member with cancer. Particular attention was given to examine the relationship between dyadic perceptions of role adjustment and mutuality as facilitators in resilience for posttreatment cancer patients and family caregivers. Method: For this convergent parallel, mixed-methods study using grounded theory methodologies, 12 dyads were recruited from the National Institutes of Health Clinical Center in Bethesda, Maryland, USA. Qualitative data collection focused on social interactions between cancer patients and their family caregivers to better understand and describe how post-treatment patients and caregivers create mutuality in their relationships, how they describe the processes of role-adjustment, and how these processes facilitate dyadic resiliency. Quantitative data collected through electronic survey included the Family Caregiving Inventory (FCI) for Mutuality Scale, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, and Mental Health Continuum-Short Form (MHC). Results: Eleven participants were spouses. Twenty-two self-reported as Caucasian. The sample ranged from 35 to 71 years of age (Caregiver M = 53.7, Patient M = 54.3). Most of the caregivers were female (n = 8; 66.7%) and most of the patients were male (n = 9; 75%). Qualitative interview data illuminated two primary psychosocial processes relating to resilience, role adjustment and mutuality, as key facilitators for transformation and growth within dyadic partnerships coping with the challenges of cancer treatment and cancer caregiving. The FCI-mutuality score for patients (M = 3.65 ± 0.47) and caregivers (M = 3.45 ± 0.42) reflected an average level of relationship quality. Relative to participation in, and satisfaction with social roles and activities, patients (M = 50.66 ± 7.70, M = 48.81 ± 6.64, respectively) and caregivers (M = 50.69 ± 8.6, M = 51.9 ± 8.75, respectively) reported scores that were similar to the US General Population (M = 50 ± 10). Conclusions: New patterns of role adjustment and mutuality can assist with making meaning and finding benefit, and these patterns contribute to dyadic resilience when moving through a cancer experience. There are few interventions that target the function of the dyad, yet the emergent model identified in this paper provides a direction for future dyadic research. By developing interventions at a dyadic level, providers have the potential to encourage dyadic resilience and sustain partnerships from cancer treatment into survivorship. 

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Older adult caregivers of their spouses with acquired late-life disability: examining the effectiveness of an internet-based meditation program in mitigating stress and promoting wellbeing

This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.

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Caring for Aging Populations: Examining Compassion Fatigue and Satisfaction

Stamm’s Professional Quality of Life Scale (ProQOL) was utilized to examine compassion fatigue and compassion satisfaction among three types of caregivers: formal (employed in a caregiver role), adult child (caring for an aging parent), and spouse/partner (caring for significant other). Data were collected from a sample of 87 adults who were currently (for 6 months or longer) providing care to an individual 65 years of age or older. The results revealed that formal caregivers had significantly higher compassion satisfaction scores compared to both adult child and spouse/partner caregivers. Additionally, results indicated that formal caregivers had significantly lower compassion fatigue scores than adult child caregivers. Although limited by the homogeneities in the sample of convenience, this study suggests that family caregivers could benefit from additional support in providing care. Furthermore, research should be conducted to examine factors that contribute to formal caregivers’ increased satisfaction and decreased fatigue in an effort to inform family caregivers. 

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“Ours is the Strangest Situation, Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage. 

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Factors associated with marital satisfaction and quality of life in family caregivers of patients with mental disorders

(1) Background: The aim of this research was to analyze factors associated with quality of life (QoL) and marital satisfaction in married family caregivers of patients with mental disorders. (2) Methods: A cross-sectional study was conducted in all community mental health services in Goiania municipality, Brazil, in 2016–2017. Married family caregivers of patients with severe and persistent mental disorders were recruited and their QoL and marital satisfaction was assessed by using the World Health Organization Quality of Life Instrument Abbreviated version (WHOQOL-BREF) and Marital Satisfaction Scale. Multiple linear regressions were performed to identify factors associated with QoL and marital satisfaction. (3) Results: For 163 family caregivers, the psychological and environmental QoL domains presented the best and the worst scores, respectively. Factors independently associated with better QoL for caregivers were male caregiver, the younger age of a caregiver, >8 years of schooling, ≥5 years as a caregiver who performed physical activities, caregiver without chronic disease, and no patient’s crisis in the last 30 days. Factors independently associated with marital satisfaction of the caregiver were male caregiver, caregiver with >8 years of schooling, caregiver who received support by relatives to care for the patient, caregiver who performed physical activities, no patient’s crisis in the last 30 days, and patient hospitalization in the last six months; (4) Conclusions: The main predictor for marital satisfaction was support by relatives, and for QoL it was no patient’s crisis in the last 30 days. 

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Needs-focused interventions for family caregivers of older adults with cancer: a descriptive interpretive study

Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.

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Care Burden and Mental Ill Health in Spouses of People With Parkinson Disease Dementia and Lewy Body Dementia

Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. Results: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. Conclusion: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.

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Care Stress Experienced by Caregivers of Elderly Individuals With Disabilities and the Coping Strategies Utilized: A Survey Study in the City of Nanjing, China

The objectives of this study were to (1) analyze the circumstances of caregivers of elderly individuals with disabilities; (2) present their levels of care stress; (3) examine family, market, and government factors that help reduce this care stress; and (4) identify the most effective method of alleviating stress for these individuals. Face-to-face interviews were conducted using standardized questionnaires. Caregivers experienced a moderate level of stress, which increased with time. Spouse caregivers experienced highest care stress, with psychological stress being greatest. All caregiver groups received different levels of care assistance from family, market, and government. Most received support from family, few paid for professional care market services, and most were unsatisfied with government care services. Stress was associated differently with care time, care assistance, and sociodemographic characteristics. Spouse caregivers, psychological counseling, and quality of public care services require further attention, with an integrated care system required to help alleviate care stress among caregivers.

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Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability

Background and Objectives: Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. Research Design and Methods: This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. Results: After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Discussion and Implications: Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas.

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

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Needs of people with dementia and their spousal carers: A study of those living in the community

Objective: To identify care and support needs, as reported by people with dementia and their spousal carers living in the community in metropolitan Western Australia. Methods: An interpretive description approach was utilised. Semi‐structured interviews were conducted with 10 dyads of spousal carers and people with dementia. Comparative analysis was used to develop themes regarding need, which were reviewed using two focus groups of spousal carers. Results: Three major themes were developed through analysis of data from the interviews and were refined by the focus groups: (a) environmental enablers to support care; (b) strong caring relationships; and (c) adaptation of daily life roles. Conclusions: As dementia progresses, continued support to maintain participation in meaningful activity is needed. Strong caring relationships, knowledge and an understanding of dementia among health professionals, service providers and family members were key to maintaining support for the needs of people with dementia and their spousal carers.

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Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review

Objective: The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.; Introduction: Currently 47 million people in the world have a diagnosis of dementia and this number is predicted to climb to 75 million by 2030. The majority of care is provided by family members, particularly spouses/partners. Quantitative systematic reviews of spouse/partner caregivers demonstrate negative health effects for these caregivers. This review synthesized the qualitative evidence on the experiences of spousal/partner caregivers of people with dementia to further understanding how this care and the context of care contribute to the health and wellbeing of spousal/partner caregivers.; Inclusion Criteria: This review considered qualitative studies that explored the experiences of spousal/partner caregivers providing care for adults with dementia. The focus was on qualitative designs including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical research and feminist research.; Methods: The search strategy used a three-step approach and was aimed at locating both published and unpublished studies. Key databases included: MEDLINE, CINAHL, Embase, PsycINFO, Sociological Abstracts, ISI Web of Science, and Dissertation Abstracts International. Grey literature was searched using keywords from the database searches. The databases were searched from inception to February 2017 and a mix of controlled vocabulary (i.e. MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences and perceptions of spousal/partner caregivers providing unpaid care for adults with dementia. During the title and abstract screening, only English and French articles were included. The recommended Joanna Briggs Institute approach to study selection, critical appraisal, data extraction and data synthesis was used. Seven of the 10 critical appraisal criteria were deemed essential, with exceptions identified for criteria 1, 6 and 7.; Results: Nineteen studies were included in the review. Study designs included phenomenology (eight), grounded theory (five), qualitative description (four), ethnography (one) and narrative inquiry (one). The total number of participants was 248 (164 women and 84 men). The overall quality of the studies was rated as moderate on the ConQual score, with dependability rated as moderate and credibility rated as high. One hundred and fifty-five findings were aggregated into four categories and two synthesized findings. The two synthesized findings were: "the expectation to care in the midst of uncertainty and unpredictability", and "the caregiver as hostage".; Conclusions: This review provides a comprehensive understanding that can inform spousal/partner caregiver policies and programs. Evidence is required on the experiences and perceptions of caregivers across the gender continuum. Interventions and interventional research that mobilizes the evidence to date is essential for the future of caregivers. The limitations to this review include: the possibility of missed studies, all study participants being in heterosexual relationships, and the majority of participants being Caucasian. Recommendations for practice, policy and research include: the need for awareness of the extent of change in the lives of the person with dementia and the spousal/partner caregiver, the importance of support and respite, the need to tangibly recognize the value of the unpaid caregiver in a way that preserves the health and wellbeing of this group, and research is required that is culturally sensitive and reflects the experiences of the lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, pansexual (LGBTTQQIAAP) populations.

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Effects of long‐term care setting on spousal health outcomes

Objective To provide empirical evidence on the effects of home and community‐based services (HCBS) (vs nursing home) use on spousal health. Data Sources Merged data from the 1996 to 2012 Health and Retirement Study (HRS) and the Area Health Resource File (AHRF). Study Design We assess the impact of HCBS use on spousal health. We use an instrumental variable (IV) approach to account for the potential endogeneity of the choice of care setting and reverse causality. Our instrument is the supply of skilled nursing home beds per 1000 people older than 65 years. Data Extraction Methods Our sample includes spouses of HCBS or nursing home users, resulting in 8608 observations. Principal Findings We find that HCBS use leads to harmful effects on spousal physical health, which may be caused by increased informal care responsibilities. We also find improved spousal mental health, especially in depression symptoms, which may be caused by increased satisfaction. Conclusions We find evidence of both beneficial (mental health) and harmful (physical health) consequences for spouses of individuals receiving LTC at home relative to in an institution. Our results are important in estimating the potential cost and effectiveness of HCBS expansion.

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Quality of life perceptions of family caregivers of older adults stroke survivors: A longitudinal study

There are few formal outreach and out-patient support services to help family caring for older adults who have had a stroke in developing countries. Family caregivers experience negative changes in their quality of life. To assess quality of life perceptions of spouse and non-spouse caregivers of older adult stroke survivors. A longitudinal survey study. A convenience sample of forty-eight family caregivers was recruited from the Special Care Stroke Unit at a University Hospital in South Brazil. Quality of life was measured using the World Health Organization's Quality of Life BREF survey upon discharge from the hospital (Time 1) and two months after (Time 2). Non-spouse caregivers had the lowest Social Relationship scores at Time 1 (p <.001) and at Time 2 (p =.005), both in terms of personal relationship, the quality of their sex lives and support received from others. Unfortunately, formal community support programs for family caregivers in Brazil are lacking. Post-stroke caregiving is largely a family affair. Quality of Life assessments among family caregivers of older adult stroke survivors are crucial, particularly after discharge.

  • Non-spouse caregivers of older adults stroke survivors have lower quality of life regarding social relationships.
  • QOL among family caregivers should be assessed before and after discharge from a Stroke Care Unit.
  • Our findings provide knowledge of the QOL priorities of family caregivers and recommendations for nurse practitioners.
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Exploring family stigma among caregivers of persons with Alzheimer's disease: The experiences of Israeli-Arab caregivers

Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.

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Engaging the person with young-onset dementia: working in partnership to support meaningful activity

Imelda cared for her husband through his journey with young-onset Alzheimer's disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.

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A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

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Is living well with dementia a credible aspiration for spousal carers?

In England there has been substantial policy development and an academic drive to promote the goal of 'living well' for people with dementia and their family members. This article critically evaluates the feasibility of this intention, with reference to the experience of those caring for people with the condition. Qualitative data are utilised from a study which explored how couples negotiate relationships and care. The focus of this paper is the perspectives of spousal carers and the challenges they encounter within their caring role. Views were obtained via semi-structured joint interviews where the carer participated alongside the person with dementia. The extent to which living well with dementia is a credible aspiration for carers is examined via three themes: identity subsumed under care responsibilities; the couple as an isolated family unit; and barriers to professional support. The findings highlight that experience of caring is highly complex and fraught with multiple practical, emotional and moral pressures. It is asserted that research into dementia and care relationships must avoid a zero sum situation, prompted by living well discourses, where attempts to bolster the position of people with dementia compound the marginalisation and stigmatisation of informal carers

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The relationship between perceived social support and depressive symptoms in informal caregivers of community-dwelling older persons in Chile

Aim: Depression among caregivers of older persons is a serious concern, but it is often overlooked and neglected in developing countries. The aim of this study was to examine the relationship between perceived social support and depression in informal caregivers of community-dwelling older persons in Chile.; Methods: We analyzed cross-sectional secondary data on 377 dyads of community-dwelling older persons and their informal caregivers from a nationwide survey in Chile. The Duke-UNC Functional Social Support Questionnaire (FSSQ) was used to measure caregivers' perceived social support, and the Center for Epidemiologic Studies Depression Scale assessed their depression.; Results: In this study, 76.9% of the caregivers perceived a high level of social support, and 46.9% were assessed as having depression. Based on multivariable analysis, factors that decrease the likelihood of being depressed are a high level of social support (odds ratio (OR) = 0.311, 95% confidence interval (CI): 0.167-0.579) and having taken holidays in the past 12 months (OR = 0.513, 95%CI: 0.270-0.975). Factors that increase the likelihood of being depressed are being a female caregiver (OR = 2.296, 95%CI: 1.119-4.707), being uninsured (OR = 4.321, 95%CI: 1.750-10.672), being the partner or spouse of the care recipient (OR = 3.832, 95%CI: 1.546-9.493), and the number of hours of care (OR = 1.053, 95%CI: 1.021-1.085).; Conclusion: Higher levels of perceived social support and holidays were associated with lower levels of depression. However, being female, being the care recipient's partner or spouse, being uninsured, and having long care periods had detrimental effects. Interventions to preserve and enhance perceived social support could help improve depressive symptoms in informal caregivers. Additionally, support should be available to caregivers who are women, uninsured, and the care recipient's partner or spouse, as well as those who provide care for long hours, to ensure they have respite from their caregiving role.

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Male partners' experiences of caregiving for women with cervical cancer—a qualitative study

Aims and objectives: This study aimed to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. Background: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce. Additionally, cervical cancer and its impact on male caregivers are less explored than how other cancer diagnoses impact male caregivers. The theoretical concept of caring masculinities is helpful to interpret men's experiences as caregivers and partners. Design: The study employs a qualitative design with semi‐structured interviews with six men/partners recruited through the gynaecological section at a hospital. COREQ reporting guidelines have been applied. Findings: Based on our analyses, we find that men's experiences of being caregivers and partners of women treated for cervical cancer are multifaceted, comprising emotional and practical aspects. However, three main findings stand out as particularly significant for men in the context of cervical cancer: loneliness, an altered sexual relationship and shared feelings of vulnerability. Conclusions: The men describe an interdependence in the relationship with the women but also how the relationships have been seriously altered, particularly when it comes to sexuality. These findings resonate with hegemonic as well as caring masculinities. Relevance to practice: Complex issues of intimacy and sexuality should be a pivotal element in educating future healthcare professionals. We strongly suggest that issues such as dealing with masculinity and caregiving roles should be on the agenda and reflected upon in teaching and supervising in clinical practice. A broader approach to sexual health and relationships is needed in the patient–clinician relationships, including information about human papillomavirus. 

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Interdependence in Health and Functioning Among Older Spousal Caregivers and Care Recipients

Older spousal caregiving relationships involve support that may be affected by the health of either the caregiver or care recipient. We conducted a longitudinal analysis using pooled data from 4,632 community-dwelling spousal care recipients and caregivers aged ⩾50 from the 2002 to 2014 waves of the Health and Retirement Study. We specified logistic and negative binomial regression models using lagged predictor variables to assess the role of partner health status on spousal caregiver and care recipient health care utilization and physical functioning outcomes. Care recipients' odds of hospitalization, odds ratio (OR): 0.83, p <.001, decreased when caregivers had more ADL difficulties. When spouses were in poorer versus better health, care recipients' bed days decreased (4.69 vs. 2.54) while caregivers' bed days increased (0.20 vs. 0.96). Providers should consider the dual needs of caregivers caring for care recipients and their own health care needs, in adopting a family-centered approach to management of older adult long-term care needs.

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The experiences of family caregivers of people with advanced dementia living in nursing homes, with a specific focus on spouses: A narrative literature review

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers' experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but... The review demonstrates that some aspects of spouses' experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses' motivations to continue caring in this context and to find ways of supporting them.

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Relationship continuity and person-centred care: An exploratory mixed-methods investigation of spousal partners’ responses to the challenging care needs of those with acquired brain injury

Some partners of people with an acquired brain injury experience the person with the injury and their relationship as continuous with the pre-injury person and relationship, but others experience the person and relationship as very different to what went before. Previous qualitative research has suggested that the experience of continuity may promote a more person-centred approach to how partners respond to challenging care needs. Given the value of triangulating evidence, this exploratory study used a mixed-methods design to investigate this suggestion. Twenty-six partners of people with an acquired brain injury completed the Birmingham Relationship Continuity Measure and a semi-structured interview about their response to challenging care needs. Interviews were coded and scored to provide a measure of the extent to which the participants’ understanding, management and emotional responses showed a person-centred approach. The findings supported the hypothesis. Greater continuity was significantly correlated with a more person-centred approach. Associating relationship continuity and person-centred care is a novel approach to the issue of how family relationships may impact on care quality. Person-centred care can have important benefits for both the giver and receiver of care. Whether it can be promoted through fostering a sense of continuity in the relationship merits further investigation. 

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Male Caregivers Report Problems in Caring at Home After Spouses Survive Stroke

Stroke is sudden and often traumatic with results that affect both the patient and family members who provide care. Approximately 40% of individuals caring for family members/friends are male. Transitioning from the noncaregiver role to caregiver can be unsettling. Guided by Friedemann's framework of systemic organization, this secondary data analysis examined problems reported by men caring for spouses in the first year after stroke. Using a mixed methods design, 73 caregivers (CGs) participated in bimonthly telephone interviews for 1 year. For this analysis, only the males caring for spouses (n = 12 married and n = 1 unmarried partner) were examined. These data were analyzed using Colaizzi's rigorous method of content analysis. Five problem themes emerged: 1) adjusting to multitasking in everyday living (Friedemann's system maintenance and individuation), 2) recognizing physical and mental disabilities (coherence), 3) dealing with outside forces and limited resources (individuation), 4) struggling to return to normal (system maintenance), and 5) feeling physically, mentally, and emotionally exhausted (system maintenance). These problem themes demonstrated incongruence as the men sought to maintain their prior lives. Theory-based themes of male stroke CGs' problems were uncovered that can be used to target interventions to help them achieve balance between incongruence and congruence in their lives.

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Mutual Effects of Depression on Quality of Life in Patients and Family Caregivers

OBJECTIVES: To elucidate the importance of mutual effects within dyads by examining the contribution of depression on quality of life (QOL) in patients with advanced cancer and their family caregivers (FCs). SAMPLE & SET TING : 716 patients with advanced cancer paired with their FCs at two large, private not-for-profit hospices. METHODS & VARIABLES: A descriptive, cross-sectional design with the baseline data of a randomized hospice clinical trial was used. Structural equation modeling helped examine four hypotheses by integrating the features of the Actor-Partner Interdependence Model. Variables included QOL and depression. RESULTS: Depression in patients with cancer and their FCs exhibited significant actor effects on an individual's QOL after controlling for the partner effects. Among the spousal pairs, depression in FCs exhibited a positive partner effect on the functional well-being of patients with cancer, indicating that depressive symptoms occurring in FCs may increase patients' functional well-being. IMPLICATIONS FOR NURSING: This study suggests the importance of consistent assessment in emotional well-being for dyads with cancer because their concerns may be transmitted to each other.

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Unmet Support Needs of Informal Caregivers of Older Adults

Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner’s ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.

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Family Caregivers of Older Adults, 1999–2015: Trends in Characteristics, Circumstances, and Role-Related Appraisal

Purpose of Study To assess trends in family caregiving between 1999 and 2015. Design and Methods We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined. Results Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999. Implications Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.

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Mediators of burden and depression in dementia family caregivers: Kinship differences

Objectives: To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated.; Method: Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children).; Results: Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers.; Conclusion: These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed.

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“Stuck in a loop of fear”: a phenomenological exploration of carers’ experiences supporting a spouse with acquired brain injury

Purpose: Family caregivers are important to facilitating the rehabilitation of individuals with brain injury. However, research shows spousal carers often reporting poorer health and well-being with psychosocial challenges including increased marital dissatisfaction. This study explores the accounts of participants caring for a spouse with brain injury. Materials and methods: This study used semi-structured interviewing and interpretative phenomenological analysis. Results: One theme, “Living in and beyond the loop of fear”, with two subheadings is reported. Participants’ attempts to manage their fears prominently defined their early caregiving. Fears were aggravated by the vulnerability of their spouse’s health which partially owed to brain injury sometimes having no symptoms prior to its onset. Consequently, participants anxiously strove to prevent further harm to their spouse’s health due to what they perceived as the continued “hidden” threat of brain injury. Therefore, participants became hypervigilant, leaving themselves vulnerable to burnout. Over time, some participants modified care practices and managed fears using beliefs accepting their limits to protect their spouses’ health. Conclusions: Findings suggest that beliefs conducive to acceptance helped carers to develop more sustainable, less over-protective, care. Interventions to help carers develop similar beliefs could be provided in therapeutic settings. Recommendations for future research are made. Implications for Rehabilitation: Caring for a long-term partner with acquired brain injury has considerable challenges which can threaten an individual’s health and well-being. Our research reports on carers’ experiences of anxiety which they managed through hypervigilant and overprotective practices which put them at risk of burnout. Consequently, we recommend the promotion of care beliefs that reframe caregiving: recognising the carer’s limitations to safeguard a spouse, whilst accepting the vulnerability of the spouse’s health. We propose that promoting such principles in therapeutic settings may better equip carers emotionally to provide sustainable care, something which could benefit the carer and spouse’s rehabilitation alike.

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Making Ends Meet (or Not): How Public Policy Affects Caregivers' Income

Federal policies present roadblocks to caregivers, especially to their financial security. Federal Medicaid law limits payments for spousal caregiving and the Family and Medical Leave Act only provides for unpaid leave. The Social Security Administration gives no work credits for persons providing free caregiving. Federal Medicaid law requires all caregiving be provided voluntarily, but many state Medicaid programs are not in compliance. And, federal law requires that state Medicaid programs provide protections against spousal impoverishment for persons receiving Medicaid HCBS, but the federal requirement expires at the end of 2018.

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Older Adults, Caregiving, and Late-Life Mental Health Issues

During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.

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Perceived burden among spouse, adult child, and parent caregivers

Aims: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Background: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Design: Cross‐sectional study. Methods: A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N = 1,062). Data collection included recipients’ characteristics. Caregivers’ perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. Results: Care recipients’ low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3–6% and high quality of support 2–5% of the total variation in the burden explained by the models, which ranged between 45–55%. Conclusion: Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high‐quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients

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Trends in Informal Care for Disabled Older Americans, 1982-2012

Background and Objectives: We examine trends in informal care from the perspective of both community-dwelling disabled older Americans and their caregivers from 1982 to 2012. We decompose hours of care received from spouses and children according to changes in: (a) the number of potential spousal and child caregivers ("family structure"), (b) the likelihood that existing spouses and children are caregivers ("caregiving propensity"), and (c) the amount of care provided by individual caregivers ("time burden").; Research Design and Methods: We examine two sets of time trends based on distinct samples of community-dwelling disabled older Americans from the 1982-2004 waves of the National Long-Term Care Survey (NLTCS) and the 2000-2012 waves of the Health and Retirement Study (HRS).; Results: Existing spouses' and children's decreasing likelihood of being caregivers led to fewer spousal and child caregivers per disabled older person in the 2004 NLTCS than the 1982 NLTCS. However, the NLTCS and HRS time trends suggest that the amount of care provided by individual caregivers was similar from 1989 to 2012.; Discussion and Implications: Because individual caregivers' time burden has remained fairly constant since at least 1989, advocacy on behalf of policies that promote more and better support for caregivers is appropriate.

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Exploring how workplace and social policies relate to caregivers' financial strain

Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016-17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers' employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients' financial strain and the caregiver's reduction or ceasing of work. Medicare may be protective to minimize caregivers' need to reduce or cease work. Implications for caregivers' ability to stay engaged in the workforce and prepare for their own retirement are explored.

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Care Burden And Quality of Life of Family Members Caring for Cancer Outpatients

Background: Today, most cancer treatment is given in outpatient treatment centers. In this process, family members who are responsible for the primary care of the patient have difficulty coping with the side effects of the disease and the treatment. This can change the reactions of family members to care giving, affecting the physical and psychological health of family members. Aim: This study has been carried to determine the relationship between caregiving burden and quality of life (QOL) of family caregivers of outpatients receiving chemotherapy. Method: This descriptive and cross-sectionalstudy was carried out 120 patients' family caregivers applying to the outpatient center of university to receive chemotherapy. The data were collected through "Personal Information Form", "Caregiver's Stress Index'', " Cancer Patients' Caregiver Family Members' Life Quality Scale (CQOLC) " and by the researchers. Result: It has been determined that the family caregivers being female, having a low level of education, having a job, having lower incomes than their expenses, giving care for their spouses and giving care 21 hours and over daily have the worst QOL. All the family caregivers giving care reported that they live psychological distress while looking after the patient. Due to chemotherapy, all the family members providing care stated to have difficulties while handling the side effects occurred in patients. It was found that 30.8% of the family members could not cope with nausea, 29.1% with fatigue, 24.2% with loss of appetite, and 19.2% with vomiting. Conclusion: By reducing the maintenance burden of family member caregivers, it can be considered that the QOL of both family members and patients may increase.

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Gender Differences in Spousal Caregivers’ Care and Housework: Fact or Fiction?

Many studies reveal a gender gap in spousal care during late life. However, this gap could be an artifact of methodological limitations (small and unrepresentative cross-sectional samples). Using a data set that overcomes these limitations, we re-examine the question of gender differences in spousal care and housework adjustment when a serious illness occurs.We use biannual waves between 2001 and 2015 of the German Socio-Economic Panel Study and growth curve analyses. We follow couples longitudinally (identified in the household questionnaire) to analyze shifts in spousal care hours and housework plus errand hours that occur as a response to the spousal care need. We test for interactions with levels of care need and with gender.We found that men increase their care hours as much as women do, resulting in similar care hours. They also increase their housework and errand hours more than women do. Yet at lower levels of spousal care need, women still do more housework and errands because they spent more time doing housework before the illness. Even in a context of children’s decreasing availability to care for parents, male spouses assume the required caregiving role in systems relying on a mixture of public and private care.

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Extra care: viable for couples living with dementia?

PURPOSE: The perspectives of people with dementia and their care partners regarding "extra care" housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners. DESIGN/METHOOLOGY/APPROACH: Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically. FINDINGS: Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care. RESEARCH LIMITATIONS/IMPLICATIONS: The findings presented here have limited generalisability for two reasons. First, the shared care approach consulted on was very specific. Second, the participants form a purposive sample and as such are not representative of a wider population. Despite best intentions, the voice of people with dementia, are underreported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner. PRACTICAL IMPLICATIONS: The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia. SOCIAL IMPLICATIONS: The findings of this consultation exemplify the wish of couples living with dementia to remain together, in what they perceive to be "home", for as long as possible. Couples living with dementia are therefore unlikely to wish to move into an extra care facility as a lifestyle choice option, early into their journey with dementia. This raises questions about the suitability of extra care, as a form of housing with care, for couples living with dementia. ORIGINALITY/VALUE: This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia. 

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Characteristics of the spouse caregiving experience: comparison between early- and late-onset dementia

Objectives: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programmes. Method: Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. The authors compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. Results: The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. Conclusion: The results suggest that programmes should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

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Relationship continuity and emotional well-being in spouses of people with dementia

Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.

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Transitioning into spousal caregiving: contribution of caregiving intensity and caregivers’ multiple chronic conditions to functional health

Background: Both caregiving intensity and caregivers’ multiple chronic conditions (MCCs) are important aspects of caregiving that might affect the health and well-being of older spousal caregivers, but few investigations have simultaneously modelled their impact during the transition into spousal caregiving. Objective: To examine the differential effects of caregiving intensity and caregivers’ MCCs on functional health over time among individuals entering the spousal caregiver role. Methods: A total of 1,866 non-caregivers at the baseline were followed over a 4-year period (2011–2015). The effects of transitioning into caregiving (transitioned into low-intensity and transitioned into high-intensity versus never-caregiver) and caregivers’ MCCs (reported before and during the transitioning period versus no MCCs) on functional health at the follow-up were estimated using mixed-effects regression models. Results: Transitioning into spousal caregiving was associated with a decline in functional health, particularly for those transitioned into high-intensity caregiving, and for those who reported MCCs when transitioning into the caregiver role. The association between transitioning into spousal caregiving and functional decline was strongest for high-intensity caregivers reporting MCCs when transitioning into caregiving, followed by low-intensity caregivers reporting MCCs when transitioning into caregiving. Conclusion: The results highlight the contribution of transitioning into high-intensity caregiving and caregivers’ MCCs to the functional health decline of spousal caregivers. Caregiver support interventions should target spousal caregivers who have newly entered a demanding caregiving role; clinical attention should be emphasised for the development of caregivers’ own MCCs coinciding with the transitioning period.

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Spouse carers: the importance of motivation

Family carers are a crucial resource in the care and support of people with dementia, but their motivations for caring can make the difference between success and failure. The author discusses his study of support workers' views on the way motivations can change and undermine carers' health.

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Dealing with daily challenges in dementia (deal-id study): an experience sampling study to assess caregiver functioning in the flow of daily life

Objective: Accurate assessment of caregiver functioning is of great importance to gain better insight into daily caregiver functioning and to prevent high levels of burden. The experience sampling methodology (ESM) is an innovative approach to assess subjective experiences and behaviour within daily life. In this study, the feasibility of the ESM in spousal caregivers of people with dementia was examined, and the usability of ESM data for clinical and scientific practice was demonstrated. Methods: Thirty-one caregivers collected ESM data for six consecutive days using an electronic ESM device that generated ten random alerts per day. After each alert, short reports of the caregiver's current mood state and context were collected. Feasibility was assessed by examining compliance and subjective experiences with the ESM. Usability was described using group and individual ESM data. Results: Participants on average completed 78.8% of the reports. One participant completed less than 33% of the reports and was excluded from data analyses. Participants considered the ESM device to be a user-friendly device in which they could accurately describe their feelings and experiences. The ESM was not experienced as too burdensome. Zooming in on the ESM data, personalised patterns of mood and contextual factors were revealed. Conclusions: The ESM is a feasible method to assess caregiver functioning. In addition to standard retrospective measurements, it offers new opportunities to gain more insight into the daily lives of people with dementia and their caregivers. It also provides new possibilities to tailor caregiver support interventions to the specific needs of the caregiver.

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Caregiver characteristics and bereavement needs: findings from a population study

Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. Aim: The authors compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.

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Spousal caregivers and persons with dementia: increasing participation in shared leisure activities among hospital-based dementia support program participants

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses’ participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimisation with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognising and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers’ needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.

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Older Adult Spouses with Multiple Chronic Conditions: Challenges, Rewards, and Coping Strategies

There is a paucity of research exploring how spouses to older adults with multiple chronic conditions make meaning of their caregiving experience. For this study, we asked: What is the experience of spousal caregivers to persons with multiple chronic conditions? We applied Thorne's interpretive description approach, interviewing 18 spouses who provided a rich description of their caregiving experience; interviews were transcribed verbatim and thematically analysed. Themes were categorized according to challenges encountered, rewards gleaned, and sustaining strategies employed by participants in caregiving to their spouse with multiple chronic conditions. Unique findings relate to the challenges inherent in decision-making within the context of multiple chronic conditions. This article begins to address the gap in the literature regarding the caregiving experience within the context of multiple chronic conditions.

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A National Profile Of End-Of-Life Caregiving In The United States

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.

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Reconciling Marriage and Care after Stroke

Most research on stroke's impact on couples has focused on the transition to caregiving/receiving. Despite considerable evidence that marriage is the primary source of support in the face of chronic conditions, little is known about what happens to marriage in the context of care after stroke. To address this gap, we undertook a qualitative grounded-theory study of 18 couples in which one partner had experienced a stroke. Findings revealed two interrelated themes of the couple processes: working out care, which involved discovering and addressing disruptions in day-to-day activities; and rethinking marriage, which involved determining the meaning of their relationship within the new context of care and disability. Three distinct types of marriages evolved from these processes: reconfirmed around their pre-stroke marriage; recalibrated around care; and a parallel relationship, "his" and "her" marriage. Our findings highlight the need to consider relationship dynamics in addition to knowledge about stroke and care.

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"I just don't focus on my needs." The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study

Background Family caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers. Objective The aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs. Method Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis. Results Five themes were identified within the data. The first theme represents caregivers' overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers' health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers' unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves. Conclusion Caregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.

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The degree of social difficulties experienced by cancer patients and their spouses

Background Although recent studies have increasingly reported physical and psychological problems associated with cancer and its treatment, social problems of cancer patients and their families have not been sufficiently elucidated. The present study aimed to identify cancer-associated social problems from the perspectives of both patients and their spouses and to compare and analyze differences in their problems. Methods This was a cross-sectional internet-based study. Subjects were 259 patients who developed cancer within the previous five years and 259 patients’ spouses; the data were derived from two surveys in 2010 (patients) and 2016 (spouses) whose participants were not part of the same dyad but matched by propensity scores, estimated for age, sex, and the presence or absence of recurrence. We investigated the social difficulties of cancer patients and patients’ spouses. Regarding social difficulties experienced by cancer patients and spouses, the 60 patient survey items were categorized into 14 labels by the Jiro Kawakita (KJ) method, which is a qualitative synthesis method developed by Kawakita to classify categorical data. Results Although patients had higher scores on most subcategories, young spouses aged 39 or younger and female spouses had difficulty scores as high as the corresponding patients on many subcategories. Conclusion Health care providers should show sufficient concern for both patients and their spouses, particularly young and female spouses.

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Relationship continuity and person-centred care in how spouses make sense of challenging care needs

Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim. Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories.  Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of person-centred attributions. Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more person-centred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation.

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Couples in Need of Home Care Services: Experiences With Support From Care Professionals

Many older people desire to remain in their homes and be cared for by a family member, but this arrangement requires support from care professionals. The aim was to describe how couples in need of home care services experienced the received support from care professionals. A qualitative design with content analysis was used. Data were collected through diaries and focus groups consisting of eight couples between 65 and 80 years, and two registered nurses. The main findings are described by the following categories: Organizational adapted, Withholding, Being in a gap, resulting in the theme Lack of professional support. Couples experienced shortcomings that were related to the organization, the care professionals, and the couples themselves. The theme Lack of professional support requires more knowledge.

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The coping experiences of spouses of persons with dementia

Aims and objectives: To explore how spouses who are caregivers to persons with dementia experience everyday life 6–12 months after participation in the intervention condition in the Norwegian Cognitive Behavioural Therapy for Early Dementia (N‐CORDIAL) study. Background: There is no current medical curative treatment for cognitive impairment and dementia‐associated conditions. These conditions will lead to an increased need for daily assistance and care, as well as greater stress for caregivers. The Norwegian CORDIAL Study is a manual‐based randomised controlled trial based on the German CORDIAL study (cognitive rehabilitation and cognitive behavioural treatment for early dementia in Alzheimer's disease), consisting of cognitive rehabilitation, cognitive behavioural therapy and life review methods. Design and methods: A descriptive exploratory study with qualitative semi‐structured in‐depth interviews with six spouses of persons with dementia who had participated in the Norwegian CORDIAL study. The transcribed text was analysed by systematic text condensation. Result: The main theme identified, “An everyday search for meaning,” referred to the stress experienced by the caregivers and their coping strategies in everyday life. Conclusion: The caregivers had gained increased awareness of coping strategies in everyday life 6–12 months after the intervention. Caregivers who experienced fewer neuropsychiatric symptoms in their spouses with dementia benefitted most from the intervention. Relevance to clinical practice: The study is relevant to clinical practice as interventions focusing on how to improve coping strategies may reduce caregiver stress and contribute to postponement of nursing home placement.

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Pain Management Concerns From the Hospice Family Caregivers' Perspective

Background: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers’ perspectives. Objectives: To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers. Design: We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers’ interviews from a randomized clinical trial. Setting/Participants: We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient. Results: The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver’s medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework. Conclusion: The study provided an investigation on hospice family caregivers’ difficulties in pain management. The results can inform health-care providers and researchers of family caregivers’ challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.

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Positive emotions in caring for a spouse: a literature review

This article aimed at identifying the positive emotions connected to spouse caregiving and the advantages for spouse carers. Theoretically, the article is based on the concept of emotion and the assumptions of positive psychology. Data search is conducted via electronic literature databases and the analysis method is partly theory‐driven and partly inductive content classification. Our analyses discover and clarify the concepts associated with positive emotions in caring, such as the gains of caregiving, benefit‐finding, finding meaning, personal growth, post‐traumatic growth and resilience. We also utilise a conceptual framework to describe positive emotions in caregiving, and the identified advantages of positive emotions in spouse caregiving include distress buffering, mediation in coping with stress, increased quality of life and well‐being, and finding a sense of purpose. Finally, spouse care is seen in this article as a challenging life situation which at best can support personal growth, if the processing of both positive and negative emotions is included in daily life. Hence, the service and support system should be developed further by utilising the findings of positive psychology as well as studies of personal growth.

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Our disease: a qualitative meta-synthesis of the experiences of spousal/partner caregivers of people with multiple sclerosis

Purpose: To provide a unique and conceptually comprehensive account of the lived experiences of caregiving spouses/partners of people with multiple sclerosis, which can be used to better enable health professionals to provide appropriate support services. Method: A systematic review of qualitative studies reporting the experiences of caregiving spouses/partners was conducted. Relevant articles were identified and analysed using a meta‐ethnographic synthesis. Results: Twenty studies met eligibility criteria, of which 18 were included in the final meta‐synthesis. Six major concepts were identified: Acceptance and Appreciation, Commitment, Becoming the Carer, Living with Loss, Shifting Sands and Setbacks with Services. A model of carer experience is presented as a line of argument to synthesise the findings. Suggestions are made regarding the types of supportive interventions that might be effective for spousal carers. Conclusion: The findings increase our understanding about the experiences of partners caring for people with multiple sclerosis. Spousal carers can adapt to the challenges associated with change and loss, and have the potential to develop appreciation, acceptance and hope. Services need to be sensitive to the fluctuating demands placed upon carers and be flexible in their support.

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In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires (N equals 40) and in-depth interviews (N equals 8) with spousal carers in the southwest of England. Results Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience. Women were more likely to report neglecting their own health because of being a carer (p equals 0.02). The marital relationship itself was highly significant, and many carers took special measures to maintain and develop their marital bonds. Carers adapted to their roles in various ways, with those finding acceptance of their situation and accessing support appearing to cope best with the demands of the role. Discussion This study, though based on a small and geographically restricted sample, offers insight into the positive, negative, and relational experiences of spousal carers. Support that encourages carers to engage in health-promoting activities, and ideally provides opportunities for both partners to be involved in such activities together, may be particularly beneficial. 

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The Use of Life-Sustaining Procedures in the Last Month of Life Is Associated With More Depressive Symptoms in Surviving Spouses

Context Family caregivers of individuals with serious illness who undergo intensive life-sustaining medical procedures at the end of life may be at risk of negative consequences including depression. Objectives The objective of this study was to determine the association between patients' use of life-sustaining procedures at the end of life and depressive symptoms in their surviving spouses. Methods We used data from the Health and Retirement Study, a longitudinal survey of U.S. residents, linked to Medicare claims data. We included married Medicare beneficiaries aged 65 years and older who died between 2000 and 2011 (n = 1258) and their surviving spouses. The use of life-sustaining procedures (i.e., intubation/mechanical ventilation, tracheostomy, gastrostomy tube insertion, enteral/parenteral nutrition, and cardiopulmonary resuscitation) in the last month of life was measured via claims data. Using propensity score matching, we compared change in depressive symptoms of surviving spouses. Results Eighteen percent of decedents underwent one or more life-sustaining procedures in the last month of life. Those whose spouses underwent life-sustaining procedures had a 0.32-point increase in depressive symptoms after death (scale range = 0-8) and a greater likelihood of clinically significant depression (odds ratio = 1.51) compared with a matched sample of spouses of those who did not have procedures (P < 0.05). Conclusion Surviving spouses of those who undergo intensive life-sustaining procedures at the end of life experience a greater magnitude of increase in depressive symptoms than those whose spouses do not undergo such procedures. Further study of the circumstances and decision making surrounding these procedures is needed to understand their relationship with survivors' negative mental health consequences and how best to provide appropriate support. 

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Wife Caregiver Experiences In the Patient with Prostate Cancer at Home

This study explored the caregiving experiences of wives of patients with prostate cancer. Twenty wives revealed those older, educated, or married longer were less burdened by caregiving, but needed more information. Findings contribute new dimensions in caregiving for patients with prostate cancer and their wives.

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Exploring partners' perspectives on participation in heart failure home care: a mixed-method design

Aim. To describe the partners' perspectives on participation in the care for patients with heart failure receiving home care. Background. Partners are often involved in care of patients with heart failure and have an important role in improving patients' well-being and self-care. Partners have described both negative and positive experiences of involvement, but knowledge of how partners of patients with heart failure view participation in care when the patient receives home care is lacking. Design. A convergent parallel mixed-method design was used, including data from interviews and questionnaires. Methods. A purposeful sample of 15 partners was used. Data collection lasted between February 2010 - December 2011. Interviews were analysed with content analysis and data from questionnaires (participation, caregiving, health-related quality of life, depressive symptoms) were analysed statistically. Finally, results were merged, interpreted and labelled as comparable and convergent or as being inconsistent. Results. Partners were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation: adapting to the caring needs and illness trajectory, coping with caregiving demands, interacting with healthcare providers and need for knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context. Conclusion. The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation. 

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If they are OK, we are OK: the experience of partners living with neuromyelitis optica

Aim: Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. Method: A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. Results: Three qualitative themes influenced partners’ quality of life (QoL): role/relationship; it’s all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. Conclusion: Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion. 

Implications for Rehabilitation

  • NMO has a strong impact on couples, resulting in both physical caregiving needs and anxiety regarding the unpredictability of potential devastating relapses.
  • Partners do not necessarily experience clinically significant “burden”, anxiety or depression, and tools which screen for this may not capture the nature of their experiences.
  • Health-care professionals need to acknowledge, consult, and respect the experience of partners during assessment and implementation of action plans.
  • Partners should be individually assessed based upon the physical and emotional dependency created by NMO to improve their health and well-being.
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Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

Implications for Rehabilitation

  • Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress. 
  • More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.
  • Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.
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A phenomenological construct of caring among spouses following acute coronary syndrome

The aim of this study was interpret the existential construct of family caring following Acute Coronary Syndrome. Family support is known to have a positive impact on recovery and adjustment after cardiac events. Few studies provide philosophically-based, interpretative explorations of carer experience following a spouse's ischaemic event. As carer experiences, behaviours and meaning-making may impact on the quality of the support they provide to patients, further understanding could improve both patient outcomes and family experience. Fourteen spouses of people experiencing Acute Coronary Syndrome in Sydney, Australia were engaged in a single, semi-structured interview. Interviews were audio-recorded and transcribed verbatim. Data were analysed using hermeneutic interpretation within a Heideggerian phenomenological framework. Acute Coronary Syndrome disrupts lived temporality, and the projected potential for carers' being-alongside. Carers experienced an existential uncertainty that arose from difficulty in diagnosis, and situated fear as an attuned, being-towards-death. They constructed protective strategies to insulate their partner and themselves from further stress and risk, however, unclear boundaries for protection heightened carer anxiety. The existential structure of care included one of two possible Heideggerian modes: leaping-in care was a dominating mode that required a high level of carer vigilance leaping-ahead care was a metaphorical walking alongside, as carers gave back control, freeing opportunities for the person to 'own' care. Supporting carers through the intensive phase of leaping-in care, and equipping them for informed leaping-ahead care should be a focus in both the acute and post-discharge care phases.

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Multimedia information intervention and its benefits in partners of the head and neck cancer patients

We aimed to investigate the levels of anxiety, depression, satisfaction with information provision and cancer‐related knowledge in partners of head and neck cancer (HNC) patients receiving a Multimode Comprehensive Tailored Information Package (MCTIP). A non‐randomised, controlled trial was conducted with partners of HNC patients recruited at two academic hospitals in Montreal. The Test participants received the MCTIP, while the Control participants received information in an ad hoc manner. All participants were evaluated using the Hospital Anxiety and Depression Scale (HADS), Satisfaction with Cancer Information Profile and a cancer knowledge questionnaire at baseline, and 3 and 6 months later. Data were analysed using descriptive statistics, t‐test and chi‐square test, and mixed model analysis to test the impact of the intervention. A total of 31 partners of HNC patients participated in this study and completed all the evaluations. The partners in the Test group experienced significantly lower levels of anxiety (= 0.001) and depression (P = 0.003) symptoms and were more satisfied (P = 0.002) with cancer information provided than partners in the Control group. Providing tailored information seems to have positive outcomes regarding anxiety, depression, and satisfaction in partners of HNC patients. Larger randomised studies are warranted to validate these effects.

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Planning for Future Care and the End of Life: A Qualitative Analysis of Gay, Lesbian, and Heterosexual Couples

Two key components of end-of-life planning are (1) informal discussions about future care and other end-of-life preferences and (2) formal planning via living wills and other legal documents. We leverage previous work on the institutional aspects of marriage and on sexual-minority discrimination to theorize why and how heterosexual, gay, and lesbian married couples engage in informal and formal end-of-life planning. We analyze qualitative dyadic in-depth interviews with 45 midlife gay, lesbian, and heterosexual married couples (N = 90 spouses). Findings suggest that same-sex spouses devote considerable attention to informal planning conversations and formal end-of-life plans, while heterosexual spouses report minimal formal or informal planning. The primary reasons same-sex spouses give for making end-of-life preparations are related to the absence of legal protections and concerns about discrimination from families. These findings raise questions about future end-of-life planning for same- and different-sex couples given a rapidly shifting legal and social landscape.

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Long-term cost of spouses' informal support for dependent midlife stroke survivors

Objectives: Stroke is a major global disease that requires extensive care and support from society and relatives. The aim of this study was to identify and quantify the long‐term informal support and to estimate the annual cost of informal support provided by spouses to their stroke surviving partner. Method: Data were based on the 7‐year follow‐up of the Sahlgrenska Academy Study on Ischemic Stroke. One‐third of the spouses stated that they provided support to their stroke surviving partner. The magnitude of the support was assessed with a study‐specific time‐diary and was estimated for independent and dependent stroke survivors based on the scores of the modified Rankin Scale. To deal with skewed data, a two‐part econometric model was used to estimate the annual cost of informal support. Result: Cohabitant dyads of 221 stroke survivors aged <70 at stroke onset were included in the study. Spouses of independent stroke survivors (n = 188) provided on average 0.15 hr/day of practical support and 0.48 hr/day of being available. Corresponding figures for spouses of dependent stroke survivors (n = 33) were 5.00 regarding practical support and 9.51 regarding being available. The mean annual cost of informal support provided for independent stroke survivors was estimated at €991 and €25,127 for dependent stroke survivor. Conclusion: The opportunity cost of informal support provided to dependent midlife stroke survivors is of a major magnitude many years after stroke onset and should be considered in economic evaluations of health care.

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Stroke survivors' long-term QALY-weights in relation to their spouses' QALY-weights and informal support: a cross-sectional study

Background: Healthcare interventions that have positive effects on the stroke survivors’ health-related quality of life (HRQoL) and quality-adjusted life-years (QALYs) might also have positive effects for their spouses in terms of improved HRQoL and/or reduced spousal informal support. However, knowledge about stroke survivors’ HRQoL and QALY and the consequences for their spouses’ HRQoL and QALY is limited. Therefore, the aim of this study was to describe the HRQoL and QALY-weights in dyads of stroke survivors in comparison with dyads of healthy controls, and to study the relationship between the stroke survivors’ QALY-weights and consequences for spouses in terms of QALY-weight and annual cost of informal support, using a long-term perspective.

Methods: Data on stroke survivors, controls, and spouses were collected from the seven-year follow-up of the Sahlgrenska Academy Study on Ischemic Stroke (SAHLSIS). HRQoL was assessed by the SF-36, and the preference-based health state values were assessed with the SF-6D. The magnitude of the support was assessed with a study specific time-diary. An ordinary least squares (OLS) regression was used to estimate the association between stroke survivors’ and spouses’ QALY-weights. A two-part econometric model was used to estimate the association between stroke survivors’ QALY-weights and the time spent and cost of spouses’ informal support.

Results: Cohabitant dyads of 248 stroke survivors’ aged <70 at stroke onset and 245 controls were included in the study. Stroke survivors had lower HRQoL in the SF-36 domains physical functioning, physical role, general health, vitality (P < 0.001), and social functioning (P = 0.005) in comparison with their cohabitant spouses. There was no significant difference in HRQoL for the dyads of controls. The results from the regression analyses showed that lower QALY-weights of the stroke survivors were associated with lower QALY-weights of their spouses and increased annual cost of spousal informal support.

Conclusion: Our results show that the QALY-weights for stroke survivors had consequences for their spouses in terms of annual cost of spousal informal support and QALY-weights. Hence, economic evaluation of interventions that improve the HRQoL of the stroke survivors but ignore the consequences for their spouses may underestimate the value of the intervention.

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The caregiver burden in male romantic partners of women with non-metastatic breast cancer: The protective role of couple satisfaction

We examined the evolution of the subjective burden of romantic partners caring for women with non-metastatic breast cancer and investigated the moderating role of couple satisfaction on caring stress. Forty-seven partners filled out questionnaires 3 and 12 months after surgery. Using a stress process model, we examined caring stressors and moderating factors (couple satisfaction, coping and social support) as predictors of subjective burden. Results showed that subjective burden decreases over time and that the couple satisfaction largely explains it above and beyond other influential variables. Partners dissatisfied with their couple relationship are especially vulnerable to the stress of caregiving.

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The intensity of caregiving is a more important predictor of adverse bereavement outcomes for adult-child than spousal caregivers of patients who die of cancer

Increasing attention is being paid to specific difficulties experienced by bereaved family caregivers (FCs). Limited capacity within health and social care structures results in high intensity of informal caregiving. The focus of recent research is the identification of specific predictors of adverse FC outcomes, in order to identify those FCs who will benefit most from intervention and support. Research is challenged by multiple influencing and confounding variables. This study aimed to evaluate factors of care associated with higher grief intensity in bereaved adult–child (AC‐FCs) and spousal FCs (S‐FCs). Data from the Qualycare study, a mortality follow‐back study of bereaved FCs of patients who died of cancer, was analyzed. Four hundred eighty‐four patient–FC dyads were included: 246 AC‐FCs and 238 S‐FCs. S‐FCs received more formal (SPC) (p = 0.026), and AC‐FCs more informal (p < 0.001), support. AC‐FCs were more likely to continue to work while caregiving (p < 0.001). Patients with AC‐FCs were more likely to spend time in and die in a nursing home (p < 0.001). Higher grief intensity was associated with higher caregiving intensity (p < 0.001), as well as other factors. AC‐FCs whose relative died in NH experienced significantly lower grief intensity (p < 0.001). Intensity of caregiving predicted 11.6% of variance in grief intensity for AC‐FCs compared to 0.5% for S‐FCs. The ‘relief model’ of bereavement is relevant for AC‐FCs. The support needs of AC‐FCs and S‐FCs differ. AC‐FCs should be targeted for practical supports and interventions, in order to support home‐death, if desired by patient and FC, and optimize bereavement outcomes.

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The Family in Care for the Elderly: Managing the Overload and Coping with Difficulties

Introduction: Family is considered the main support of the elderly in a situation of dependency. Caregiving often results in overloading, leading to diverse problems. Aim: To evaluate the self-perception of the family caregiver’s overload and the strategies used to provide informal care to the dependent elderly considering their level of dependence. Method: The sample consisted of 21 children, 16 spouses, and nine other relatives of elderly dependents who responded to the Caregiver’s Overload Scale (Sequeira, 2007), the Portuguese version of Caregivers’ Assessment Management Index (CAMI, Nolan, Keady, & Grant, 1995) and the Barthel Index (Mahoney & Barthel, 1965). Results: The Barthel Index showed 34.8% of the elderly as severely dependent and 37.0% as totally dependent. The care most provided respected to medication, hygiene, food, and monitoring. Above 56.5% of the caregivers had an intense overload, both at the objective (impact of care and interpersonal relationship) and subjective (F3-Expectations regarding care and F4-Perceived self-efficacy) levels. The main reason for maintaining caregivers was family/personal obligation (95.7%). Caregivers reasonably assessed the effectiveness of their strategies in dealing with their dependent elderly (CAMI M = 101.0, SD = 15.0). There was a negative relationship between the perception of the caregiver’s overload and the age and health status of the elderly, as well as between the number of strategies used by the caregiver to overcome difficulties and the self-perception of the overload. Conclusion: The multiplicity of daily tasks performed in support of a family member in a situation of severe dependence translates into situations of intense overload, negatively impacting on care, interpersonal relationship, expectations regarding caring, and perception of self-efficacy of care.

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The Effects of the MORE Wisdom Resources on Spousal Caregivers' Life Satisfaction: An Application of the Resilience Model

OBJECTIVES: Models of resilience suggest that psychosocial resources and their interactions facilitate resilience while experiencing life challenges of caregiving. The MORE wisdom resources (sense of Mastery, Openness to experience, Reflective attitude, and Emotion regulation) have been suggested as possible personal resources of resilience that predict positive health outcomes of caregivers. Applying a model of resilience, this study examined the direct and indirect effects of the three of the MORE wisdom resources (sense of Mastery, Openness to experience, and Emotion regulation) on caregiving spouses' life satisfaction and perceived physical health. METHODS: Using data from the survey of Midlife in the United States, caregiving spouses (n = 114) and matched non-caregivers (n = 114) were included. We compared the direct and indirect effects of the wisdom resources on life satisfaction and physical health between the two groups. RESULTS: The simple mediation model proposed in 2008 by Preacher and Hayes revealed that openness to experience was directly associated with better life satisfaction among caregiving spouses. Sense of mastery and emotion regulation had indirect effects on life satisfaction through spousal support. The effects the wisdom resources on caregiving spouses' perceived physical health were not found. CONCLUSIONS: This study demonstrated that the three of the MORE wisdom resources are possible personal resilience factors influencing life satisfaction among caregiving spouses. Moreover, the study showed how spousal support mediates the relationship between the wisdom resources and life satisfaction.CLINICAL IMPLICATIONS: Interventions aiming to increase life satisfaction among caregiving spouses should focus on in reasing both personal and environmental resources and strengthening the relationship of the caregiver and care recipien

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Development of older men's caregiving roles for wives with dementia

This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5‐ to 6‐year period. The findings comprise three themes, me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

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Dementia case management through the eyes of informal carers: A national evaluation study

This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers’ care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related (p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.

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Effect of caregiving relationship and formal long-term care service use on caregiver well-being

Aim: Despite efforts to revise the traditional long‐term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front‐line care providers. The present study aimed to understand the effect of informal caregiving on caregivers’ well‐being in Singapore with respect to different types of patient–caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers’ well‐being. Methods: Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed. Multilevel regression models were used to examine the association between caregivers’ well‐being (self‐rated general health, stress level and quality of life) and LTC service use among different patient–caregiver relationships. Results: Spousal caregivers reported significantly lower quality of life compared with adult children caregivers. Non‐immediate family caregivers showed better overall well‐being compared with spouse and adult children caregivers. Caregivers of patients referred to nursing homes reported higher levels of stress and poorer self‐rated general health compared with caregivers of patients referred to community‐based services. Spouse and non‐immediate family caregivers of patients who utilized nursing home or home‐based services presented poorer self‐rated general health than caregivers of the patients who did not use any formal services. Conclusions: Developing a better understanding of the associations between well‐being and formal LTC service use for different types of patient–caregiver relationships is critical for policy makers and healthcare providers who aim to create holistic systems of care. 

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Effects of home-based long-term care services on caregiver health according to age

Background: Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age.

Methods: This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good).

Results: The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%–100% and higher care recipient health. The involvement of daughters-in-law, rather than spouses, and care recipient health were positively related to the health of caregivers aged less than 65 years.

Conclusions: The findings suggest that home-based LTC service use benefits the health of elderly caregivers. By contrast, home-based LTC service use may be negatively correlated with the health of the caregivers aged less than 65 years.

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Diabetes literacy and informal social support: a qualitative study of patients at a diabetes centre

AIMS AND OBJECTIVES: To explore the resources that patients diagnosed with type 2 diabetes drew upon to manage the disease in their daily lives. BACKGROUND: Type 2 diabetes is a disease affecting Australian adults at a rate described as an 'epidemic'. Treatment usually focuses on patient self-management, which may require daily blood sugar monitoring, oral medications or injectable therapies, and regulating diet and exercise. Health research studies of patient self-management, including those involving type 2 diabetes, have focused largely on individual-centred definitions, though a number of studies, in particular qualitative studies, have indicated the positive role of social relationships and informal social networks. DESIGN: Exploratory, qualitative.  METHODS: The project focused on 26 patients attending a diabetes centre for clinical consultations with centre staff including doctors, diabetes educators, podiatrists and dietitians. The consultations were observed and audio recorded, followed by semi-structured, audio-recorded interviews with the patients and separate interviews with the consulting professional staff.  RESULTS: Overwhelmingly the patients drew on informal social networks of support to manage the disease. Spouses were significant, sometimes presenting with the patient as a 'team' approach to managing the disease. Sons and daughters also played a significant support role, especially interpreting during consultations and explaining health information. In some cases neighbours and also local community organisations provided informal support. Only two patients claimed not to use informal social support.  CONCLUSIONS: Informal social support in patients' self-management of type 2 diabetes was found to be an important factor to be considered by clinicians. The study suggested the need for a more deliberate or pro-active policy to involve patients' family and other informal social networks in treatment programs. RELEVANCE TO CLINICAL PRACTICE: Clinicians may need document and incorporate informal social support in the development and implementation of patient management plans.

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The SICAM-trial: evaluating the effect of spouses' involvement through case management in older patients' fast-track programmes during and after total hip replacement

Aim: The aim of this study was to evaluate the effect of spouses' involvement in older patients' care trajectories, using case management as intervention in total hip replacement through fast‐track programmes.

Background: Patients need their spouses to be involved in their fast‐track programmes and this involvement is often associated with improvements in patient outcomes. However, the effect of spouses' involvement in older patients' fast‐track programmes has not yet been investigated.

Design: A two‐group quasi‐experimental design with pre‐test and repeated post‐test measures was conducted in an orthopaedic ward of a Danish Regional Hospital from February 2014–June 2015. Spouse–patient dyads were initially recruited for the control group (n = 14), receiving usual care; dyads for the intervention group (n = 15) were recruited afterwards, receiving case management intervention elements before, during and after admission.

Methods: Face‐to‐face interviews on questionnaires were conducted with spouses and patients at baseline, 2 weeks and 3 months after discharge, measuring spouses' caregiver satisfaction, difficulties and level of anxiety and patients' functional and nutritional status, pain and level of depression.

Results: The results showed that there were no differences between the groups with regard to any of the outcome measures. However, statistically significant improvements were found in the patient groups on functional status, pain and depression and in the groups of spouses on caregiver satisfaction.

Conclusion: The case management intervention seemed to have an effect in patient and spousal groups; however, this improvement could also have been caused by the effect of fast‐track treatment.

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The multidimensional burden of informal caregivers in primary malignant brain tumor

Purpose: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.

Methods: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.

Results: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).

Conclusions: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

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Long-term Care Provision and the Well-Being of Spousal Caregivers: An Analysis of 138 European Regions

Objectives: The individual burden of caring for one's relatives not only depends on care characteristics but is also related to contextual factors. The objective of this study is to determine whether regional formal long-term care provision is linked to the well-being of spousal caregivers introducing the concept of "control" as central pathway to explain this link.; Method: We applied multilevel analysis using data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from over 29,000 Europeans and 1,800 spousal caregivers located in 138 regions in 11 countries to analyze the effects of regional contexts on caregiver well-being. The provision of formal care in a region was measured by the number of long-term care beds in nursing and residential homes among the older population.; Results: We found that spousal caregivers' well-being, measured in terms of life satisfaction, loneliness, and depression, was positively linked to the regional availability of formal care, which is partly due to higher perceived control in regions with more formal care provision.; Discussion: Our results suggest that formal care supply is essential not only for care recipients but also for caregivers: perceived alternatives to the private care arrangement go along with greater well-being of informal caregivers.

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The perspectives of spouses of stroke survivors on self-management - a focus group study

Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management.; Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis.; Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful.; Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.

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Quality of Life Trajectories Among Stroke Survivors and the Related Changes in Caregiver Outcomes: A Growth Mixture Study

Objectives: To identify the distinct quality of life (QOL) trajectories among stroke survivors, and to evaluate the associations with their caregivers' burden, anxiety, and depression.; Design: This was a longitudinal dyadic study.; Settings: Stroke survivors and their informal caregivers were enrolled upon discharge from several rehabilitation hospitals, and they were followed during this multisite longitudinal study.; Participants: The stroke survivors (N=405, mean age=70.7y) included older adult men (52.0%), most of whom (80.9%) had had ischemic strokes. The caregivers (n=244, mean age=52.7y) included mostly women (65.2%), most of whom were the survivors' children (50.0%) or spouses (36.1%).; Interventions: Not applicable.; Main Outcome Measures: Latent growth mixture modeling was used to identify the distinct QOL trajectories among the stroke survivors over the course of 12 months of recovery. The longitudinal associations between the stroke survivor QOL trajectories and the caregivers' burden, anxiety, and depression were evaluated. A multinomial regression was then used to identify the predictors of the various survivor QOL trajectories.; Results: Three distinct survivor QOL trajectories were identified: high and slightly improving QOL, moderate and slightly worsening QOL, and markedly improving QOL. The caregivers' burden, anxiety, and depression mirrored the survivors' QOL trajectories. In the multinomial models, an older survivor age, hemorrhagic stroke, lower education, and coexisting chronic obstructive pulmonary disease or thyroid disease were significantly associated with a moderate and slightly worsening QOL trajectory. Women and blindness were associated with a markedly improving QOL survivor trajectory.; Conclusions: A survivor's QOL trajectory after a stroke was associated with their caregiver's burden, anxiety, and depression. Those survivors belonging to the moderate and slightly worsening QOL trajectory and their caregivers, in particular, need special care, because they are at risk for the worst outcomes.

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Life of the Second-Order Patient: Factors Impacting the Informal Caregiver

Informal caregivers (ICs) are forced to make adaptive lifestyle changes to meet the significant demand of caring for loved ones who are terminally ill. Open-ended questions were administered with 26 ICs who cared for loved ones diagnosed with terminal illnesses whose prognosis was less than six months. The results add substantive information to parsimonious literature and demonstrate a correlation with existing studies that coincide with the debilitating effects that caregiving has on the informal carer. The study clarifies the complexities of the caregiving role characterized by the involvement that may adversely affect socialization, physical health conditions, and marital dynamics, among other areas of the IC’s personal life. 

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Mild cognitive dysfunction of caregivers and its association with care recipients' end-of-life plans and preferences

Little is known about the association between cognitive dysfunction among informal caregivers and patients' plans and preferences for patients' end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers' cognitive screening scores and end of life plans and preferences of patients with advanced cancer. The current sample was derived from a National Cancer Institute- and National Institute of Mental Health-funded study of patients with distant metastasis who had disease progression on at least first-line chemotherapy, and their informal caregivers (n = 550 pairs). The Pfeiffer Short Portable Mental Status, a validated cognitive screen, was administered to patients and caregivers. Patients were interviewed about their end of life plans and preferences. Logistic regression models regressed patients' advance care planning and treatment preferences on caregivers' cognitive screen scores. Patients' cognitive screen scores were included as covariates. Most caregivers (55%) were spouses. Almost 30% of patients scored worse on the cognitive screen than their caregivers and 12% of caregivers scored worse than the patients. For each additional error that caregivers made on the cognitive screen, patients were more likely (AOR = 1.59, p = 0.002) to report that they preferred that everything possible be done to keep them alive and were less likely (AOR = 0.75, p = 0.04) to have a living will or a health care proxy/durable power of attorney. Worse caregiver cognitive screening scores were associated with higher likelihood of patients' reporting that they wanted everything done to save their lives and a lower likelihood of having a living will or other type of advanced care plan. Future studies should confirm these findings in other populations and determine the mechanisms that may underlie the identified relationships.

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Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication

Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.

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Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication

Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.

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A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial

Background: Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress. This support program is based on an existing program for adult partners of people with cancer and is adapted to meet the needs of ALS caregivers.; Methods: This study is a randomized controlled trial using a wait-list control design. One hundred and forty caregiver-patient dyads, recruited from a nationwide database and through the website of the Dutch ALS Center, will be either randomized to a support program or a wait-list control group. The blended intervention is based on Acceptance and Commitment Therapy and consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. The intervention can be worked through in 8 weeks. The effectiveness and the participants' satisfaction with the intervention will be evaluated using a mixed method design. Caregivers and patients will be asked to fill in questionnaires on 4 occasions during the study: baseline, 3 months, 6 months and 9 months. The main study outcome is the psychological distress of the caregiver assessed with the Hospital Anxiety and Depression Scale. Secondary outcomes are caregiver burden, caregiver quality of life, quality of life of the patient and psychological distress of the patient. Group differences in primary and secondary outcomes at 6 months will be compared with linear mixed model analysis. In a subgroup of caregivers we will explore experiences with the support program through semi-structured interviews. Usage of the online modules will be logged.; Discussion: The study will provide insights into the effectiveness of a blended psychosocial support program on psychological distress of caregivers of patients with ALS or PMA, as well as into indirect relations with patients' wellbeing.; Trial Registration: Netherlands Trial Registry NTR5734 , registered 28 March 2016.

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A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members

Background: Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks.; Methods: Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes.; Results: Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance.; Discussion: Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

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Multimodal rehabilitation in the late phase after stroke enhances the life situation of informal caregivers

Purpose The burden of caregiving for stroke survivors is well known, but the effect of late stroke rehabilitation on the life situation of informal caregivers is unknown. Here, we assessed changes in the life situation of informal caregivers of stroke survivors enrolled in a multimodal intervention trial. Methods This controlled study was a questionnaire-based survey accompanying a three-armed randomized controlled trial of 123 stroke survivors. The care recipients of 106 caregivers who chose to participate were assigned to rhythm-and-music-based therapy (R-MT; n = 37), horse-riding therapy (H-RT; n = 37), or delayed intervention (control group, n = 32). Perceived changes in the life situation of the caregivers were evaluated with the Life Situation among Spouses after the Stroke Event (LISS) questionnaire before randomization, after the 12-week intervention, and 3 and 6 months later. Results After the intervention, the change in the median LISS score was significantly higher among intervention caregivers (1.5 [interquartile range (IQR) 8.8]) than controls (1.5 [IQR 8.8] vs. 0.0 [IQR 12.0], p = 0.036). The improvement was maintained at 3 months (1.5 [IQR 9.0] vs. 0.0 [IQR 10.5], p = 0.039) but not at 6 months (p = 0.284). Conclusion Engaging stroke survivors in multimodal interventions late after stroke appears to have potential to produce gains also in the general life situation of informal caregivers.

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Heart Failure Self-care Within the Context of Patient and Informal Caregiver Dyadic Engagement: A Mixed Methods Study

Background: Recent heart failure (HF) patient and informal caregiver (eg, dyadic) studies have either examined self-care from a qualitative or quantitative perspective. To date, the 2 types of data have not been integrated.; Objective: The aim of this study was to understand HF self-care within the context of dyadic engagement.; Methods: This was a cross-sectional, mixed methods (quantitative/qualitative) study. Heart failure self-care was measured with the Self-care of Heart Failure Index (v.6) dichotomized to adequate (≥70) or inadequate (<69). Dyadic symptom management type was assessed with the Dyadic Symptom Management Type scale. Interviews regarding self-care were conducted with both dyad members present. Content analytic techniques were used. Data were integrated using an information matrix and triangulated using Creswell and Plano Clark's methods.; Results: Of the 27 dyads, HF participants were 56% men, with a mean age of 77 years. Caregivers were 74% women, with a mean age of 66 years, representing spouses (n = 14) and adult children (n = 7). Quantitatively, few dyads scored as adequate (≥70) in self-care; the qualitative data described the impact of adequacy on the dyads' behavior. Dyads who scored higher, individually or both, on self-care self-efficacy and self-care management were less likely to change from their life course pattern. Either the patient or dyad continued to handle all self-care as they always had, rather than trying new strategies or reaching out for help as the patient's condition deteriorated.; Conclusions: Our data suggest links that should be explored between dyadic adequacy and response to patients' symptoms. Future studies should assess dyadic adequacy longitudinally and examine its relationship to event-free survival and health services cost.

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Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization

Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

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Correlates of depression in caregivers of Ultra-Orthodox frail older adults

Depression is the most frequent negative health outcome among informal caregivers. The aims of the current study were (a) to assess the level of depression, (b) to explore associations among care recipients' characteristics, caregivers' characteristics, situational factors, and depression among Ultra-Orthodox Jewish (UOJ) caregivers. A total of 112 (44 men and 68 women) UOJ primary caregivers of frail older adults were interviewed face-to-face in their homes, using valid and reliable measures. Participants reported a notable depressive symptomatology. Three variables emerged as significant predictors of caregiver depression: higher external control (chance), being a spouse, and lower levels of social support. External locus of control, being a spouse, and social support were found to be highly important factors for explaining depression among UOJ caregivers. Resources should be allocated to target spousal caregivers with lower levels of social support and a greater sense of external locus of control in order to alleviate their depressive symptomatology.

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Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study

Purpose: The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving.; Methods: We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews.; Results: Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving.; Conclusions: Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

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Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers

Objectives: We examine gender differences in the experienced burden of partner caregivers using the stress-appraisal model. Gender differences can be explained by differences in conditions of burden (primary stressors, help from others, hours of caregiving, and secondary stressors) and how strong their effects are.; Method: The data are from the Netherlands' Older Persons and Informal Caregivers Survey-Minimum Data Set (N = 1,611 caregivers). We examine mediation and moderation effects using structural equation modeling.; Results: Women experience greater partner caregiver burden than men, which is related to women experiencing more secondary stressors (relational and financial problems, problems combining different tasks). For women and men alike, there is a positive association between burden and more primary stressors (partner's care need indicated by health impairment), help from other caregivers, and secondary stressors. For male caregivers, caregiving intensity also contributes to a greater burden.; Discussion: This study corroborates the structural impact of gender on the conditions of as well as their effects on the partner caregiver burden. Reducing the hours of caregiving for male caregivers in severe care situations and helping female and male caregivers deal emotionally with the caregiving situation can reduce the partner caregiver burden.

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Good and Bad Days: Fluctuations in the Burden of Informal Dementia Caregivers, an Experience Sampling Study

Background: Informal dementia caregivers (IDCs) are often confronted with important fluctuations in care-related burden, commonly described as "good and bad days." These fluctuations are overlooked by traditional questionnaires focusing on the average experience. The experience sampling method (ESM) is based on the repeated collection of data in everyday life, thereby allowing the description of day-to-day fluctuations in IDC burden, and the identification of their correlates. ESM studies are still scarce among IDCs, with none focusing on day-to-day fluctuations in burden.; Objectives: This ESM study aimed to examine day-to-day fluctuations in the burden of IDCs and test their associations with six moment-to-moment predictors.; Methods: Primary IDCs (N = 26, median age = 68 years, 77% women, 73% spouses) volunteered to answer questions about their daily burdens, patients' memories and behavioral problems (MBP), caregivers' MBP-related distress, psychological distress, self-efficacy and positive affects, and relationship quality; volunteers did this every evening for 2 weeks on a touchpad, resulting in 206 measures. Data were analyzed with multilevel linear regression.; Results: Day-to-day fluctuations covered about two thirds of the total variance for most study variables. All six predictors had a significant bivariate relation with daily burden, explaining 15%-32% of its fluctuations, with significant differences between caregivers in the strength of these relations. The best multivariate model explained 51% of the day-to-day fluctuations in burden. It included caregiver MBP-related distress, psychological distress, and relationship quality.; Discussion: This innovative study of IDC burden shows that day-to-day fluctuations are an important part of caregivers' real-life experiences and that half of this variability is predicted by currently understudied factors. Inviting caregivers to monitor clinical outcomes daily over 1 or 2 weeks could help tailor interventions to their individual needs and also empower them.

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The lived experience of caregivers of persons with heart failure: A phenomenological study

Background: Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy.; Aim: To describe the lived experience of the caregivers of HF patients.; Methods: A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness.; Findings: Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient.; Conclusion: The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

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Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline

Objectives: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs.; Method: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories.; Results: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types.; Conclusions: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.

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Back to Work? Not Everyone. Examining the Longitudinal Relationships Between Informal Caregiving and Paid Work After Formal Retirement

Objectives: Research on unretirement (retirees who re-enter the workforce) is burgeoning. However, no longitudinal study has examined how informal care relates to unretirement. Utilizing role theory, this study aims to explore the heterogeneity of informal care responsibilities in retirement and to examine how informal care informs re-entering the workforce in later life.; Method: Data were drawn from the Health and Retirement Study of fully retired individuals aged 62 years and older in 1998 (n = 8,334) and followed to 2008. Informal care responsibilities included helping a spouse/partner with activities of daily living (ADLs) or instrumental activities of daily living (IADLs); helping parent(s) or parent-in-law(s) with ADLs or IADLs; and single or co-occurrence of care roles. Covariates included economic and social factors. Cox proportional hazard models were utilized.; Results: When compared with noncaregivers, helping a spouse with ADLs or IADLs reduced the odds of returning-to-work in the subsequent wave by 78% and 55%, respectively (hazard ratio [HR]: 0.22, confidence interval [CI]: 0.06-0.87; HR: 0.45, CI: 0.21-0.97). There was no statistical difference to returning-to-work between noncaregivers and helping parents with ADLs/IADLs or multiple caregiving responsibilities.; Discussion: Role theory provided a useful framework to understand the relationships of informal care and unretirement. Aspects of role strain emerged, where, spousal caregivers were less likely to come out of retirement. Spousal caregivers may face challenges to working longer, and subsequently, opportunities to bolster their retirement security are diminished. Research and policy implications are discussed.

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Will you still need me, will you still feed me when I'm 64? The health impact of caregiving to one's spouse

Informal care may substitute for formal long-term care that is often publicly funded or subsidized. The costs of informal caregiving are borne by the caregiver and may consist of worse health outcomes and, if the caregiver has not retired, worse labor market outcomes. We estimate the impact of providing informal care to one's partner on the caregiver's health using data from the Survey of Health, Ageing, and Retirement in Europe. We use statistical matching to deal with selection bias and endogeneity. We find that in the short run caregiving has a substantial effect on the health of caregivers and, for female caregivers, on their health care use. These effects should be taken into account when comparing the costs and benefits of formal and informal care provision. The health effects may, however, be short-lived, as we do not find any evidence that they persist after 4 or 7 years.;

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Dyadic incongruence in chronic heart failure: Implications for patient and carer psychological health and self-care

Aims and Objectives: To examine whether chronic heart failure patient-carer dyads who disagree about the division of illness management tasks (incongruent) experience poorer psychosocial health and self-care, than those who agree (congruent).; Background: Informal carers often assist patients with chronic heart failure in the complex management of their illness, but little is known about how relationship dynamics may affect psychosocial health.; Design: A prospective cross-sectional study was adopted with a purposeful sample of 25 chronic heart failure patient-carer dyads residing in Australia.; Methods: Data were collected via mail-out questionnaires. Dyads were classified as congruent or incongruent using the Heart Failure Care Assessment Scale. Depression, anxiety, stress and quality of life were assessed in patients and carers. Additionally, self-care and relationship quality were assessed in patients; and burden and esteem were assessed in carers. Differences in congruent and incongruent patient and carer outcomes were examined.; Results: Dyads were predominantly spousal and around a third demonstrated incongruence. No significant differences were found between congruent (n = 16) and incongruent (n = 9) dyads, although patients in incongruent dyads tended to have been diagnosed more recently.; Conclusion: In chronic heart failure patient-carer dyads incongruence exists even for patients with relatively mild chronic heart failure symptoms. These findings indicate that dyadic incongruence in illness management might not affect high-functioning chronic heart failure heart failure patients or their carers.; Relevance To Clinical Practice: Given the prevalence of dyadic incongruence and the possibility of further negative outcomes with disease progression, it is important to examine factors such as length of time since diagnosis or type of carer relationship. By implementing self-care education and management strategies that focus on the dyad, rather than the individual, nurses have the potential to improve both patient and carer outcomes.

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Long-Term Care Needs in the Context of Poverty and Population Aging: the Case of Older Persons in Myanmar

Myanmar is one of the poorest and least healthy countries in Southeast Asia. As elsewhere in the region, population aging is occurring. Yet the government welfare and health systems have done little to address the long-term care (LTC) needs of the increasing number of older persons thus leaving families to cope on their own. Our study, based on the 2012 Myanmar Aging Survey, documents the LTC needs of persons aged 60 and older and how they are met within the context of the family. Nearly 40% of persons in their early 60s and 90% of those 80 and older reported at least one physical difficulty. Spouses and children constitute the mainstay of the financial and instrumental support of elderly including those with LTC needs. Nearly two-thirds of older persons reported receiving assistance with daily living activities. More than three quarters coreside with children, a living arrangement that in turn is strongly associated with receiving regular assistance in daily living. Daughters represent almost half and spouses, primarily wives, one-fourth of primary caregivers. Unmet need for care as well as inadequate care decline almost linearly with increased household wealth. Thus elderly in the poorest households are most likely to experience gaps in LTC. Given mounting concerns regarding health disparities among Myanmar's population, this pattern of inequality clearly needs to be recognized and addressed. This needs attention now rather than later given that reduced family size and increased migration pose additional challenges for family caregiving of frail elderly in the coming decades. 

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Support groups for Alzheimer’s caregivers: Creating our own space in uncertain times

Older men are often excluded from family caregiving research despite the steady increase in the number of husbands assuming primary caregiving roles. We explored perceptions of older, male caregivers’ experiences with caring for a wife with Alzheimer’s Disease (AD) and examined what aspects of the support group were beneficial. Our qualitative research methods invited six caregivers ranging in age from 74 to 85 years to narratively construct their perspectives on caring for their wives with Alzheimer’s Disease and benefits of participation in an all-male support group. Thematic analyses revealed caregivers faced several transitions. “Losses related to their personal relationships with their wife, family, and self,” captured as loss of golden years. The second area, benefits and improvements of support groups, were captured in the following theme: “creating our own space,” which included two sub-themes: “releasing our frustration” and “developing coping strategies.” There was also “Gendered experience of caregiving.” This study revealed that male caregivers benefited from the support and company of other men in similar caregiving situations. Results from this study have implications for health care professionals for the development of psychosocial educational groups aimed at providing support to male caregivers. 

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Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients. 

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Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing

Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people. Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives. Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B= −1.60,p< .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B= 1.02,p< .01) and lowered depression symptoms (B= −0.26,p< .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B= 0.44,p< .01) and non-spousal/child (B= 0.25,p< .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B= −1.24,p< .05). Other associations were suggestive but non-significant. Conclusion:The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period. 

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Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents,n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.

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Discussion Paper 8: Difficult Relationships and Family Caring

This is the eighth paper in the Care Alliance Ireland Discussion Paper series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of practitioners, policy makers, researchers and other interested parties. This often takes the form of a literature review (where possible), along with a discussion of views which have been shared with a member of the Care Alliance team either by our member organisations or Family Carers themselves. In some cases this will be a topic which has been raised and shared in the media or social spaces online.

Caring for a “loved one” has long been acknowledged as having real implications for Family Carers’ physical and mental health, along with economic, employment and other impacts.  Not all of these impacts, however, are negative. The positive impact of providing care – often significant levels of care – has been well researched.

However, much of this research presupposes that the person being cared for is, indeed, a “loved one”. What happens when the person being cared for isn’t particularly well-loved? How do Family Carers who perhaps do not even like the person they are providing care for deal with the effects of this negative, maybe even toxic, relationship?

This paper focuses on three particular “scenarios” in which Family Carers may need to manage difficult, negative and even toxic relationships while providing care to a family member or friend. These are:

  • Caring for a family member (generally a parent) who abused or neglected them in childhood
  • Caring for a spouse/partner where the relationship had significant difficulties prior to the care situation arising
  • Conflict in family/sibling relationships where one party provides significant care and others do not.
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Discussion Paper 7: Romancing the Carer - Intimate Relationships and Family Caring

This is the seventh paper in the Care Alliance Ireland Discussion Paper Series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion  within the wider community of academics, not-for-profit organisations and other interested parties. 

The relative unavailability of studies specifically addressing the issue of the impact on intimate relationships of Family Carers is worth noting. The majority of studies that have been undertaken often focus exclusively on the impacts of the disability on the relationship, rather than the impact of caring on the partner/spouse providing care, or on the partner/spouse of a Family Carer. Consequently, this paper is exploratory in nature, and is based on discussions with professionals and Family Carers. Where reference material is available, it has been included; however, material was not available for all topics under discussion in this paper.

The inspiration for the paper has been drawn from conversations with some of our member organisations and a number of Family Carers. These Family Carers have indicated that while this topic may not be of relevance to all Family Carers, it is a topic which those supporting carers must be aware of, and not be afraid to address if necessary.

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Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis

Introduction: Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Method: Concept analysis. Results: Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. Discussion: YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Implications for Practice: Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD. 

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Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study

Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations. This qualitative study examined a pilot experience of two mutual support groups for family caregivers of people with ALS. The aim was to identify caregivers’ needs, the prominent aspects of their experience, and to understand whether and how this intervention strategy might help them. Six partners (four men and two women) and six adult children (five women and one man) participated in the groups, which were conducted in northern Italy. After the support groups finished, participants underwent semi‐structured interviews. The authors conducted a content analysis of the transcripts of the interviews and the 20 group sessions. The thematic areas identified were “caregiving,” “being the son/daughter of a person with ALS,” “being the partner of a person with ALS,” “group experience” and “group evaluation.” The caregiving experience was profoundly different depending on whether the caregiver was a son/daughter or a partner of a patient with ALS. Moreover, comparison with peers and mutual support helped participants to better cope with ALS and its consequences, to improve their care for their relatives and to overcome typical caregiver isolation. These results suggest the usefulness of involving communities in caregiver support in order to create new networks and activate personal and social resources for well‐being. 

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Psychological and psychiatric symptoms of terminally ill patients with cancer and their family caregivers in the home-care setting: A nation-wide survey from the perspective of bereaved family members in Japan

Objective: The psychological and psychiatric symptoms of terminally ill cancer patients are highly problematic and have been associated with greater burden among caregivers. Until now, the extent of these problems in the home care setting was unclear.; Methods: This retrospective study was conducted as part of a nationwide survey from the perspective of bereaved family members in Japan (J-HOPE3). The bereaved family members rated the symptoms of delirium and suicidal ideation of patients with cancer, and the sleeplessness and depressed mood of family caregivers utilizing home care services in the one month before the patients' deaths. Regression analyses were performed to identify factors associated with caregivers' sleeplessness or depressed mood.; Results: Of the 532 subjects analyzed, between 17% and 65% of patients experienced various symptoms of delirium, and 27% suicidal ideation. Among family caregivers, 60% experienced sleeplessness and 35% experienced depressed mood at least once during the week. Caregivers' psychological symptoms were associated with their own poor health status, being the spouse of the patient, and the patients' psychological or psychiatric symptoms. To manage patients' symptoms, 11% of caregivers had consulted psychiatrists or psychologists while another 11% wanted to do so.; Conclusion: Psychological problems assessed were common among patients with cancer and their family caregivers in the one month of home care prior to the patient's death. An effective complementary care system, run by home-visit physicians, nurses, and experts in mental disorders, is needed.; Copyright © 2017 Elsevier Inc. All rights reserved.

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Spinal cord injury and long-term carers: Perceptions of formal and informal support

The grounded theory study from which this paper is drawn explored the experiences of partners and other long-term family carers living with, and supporting, a person with a spinal cord injury over long periods of time. Eleven (11) female carers with between eight and 33 years of living with, and supporting, a family member with a spinal cord injury were purposively recruited to the study. The study identified a number of key issues for long-term carers in this context. In this paper, the focus is on the extent to which longterm family carers perceived they were supported by health and social services. Findings revealed a significant need for practical and lifestyle assistance, including formal respite from familial and/or caregiving responsibilities when needed. Participants also sought out a range of health and social care services to address the loneliness, isolation, grief and loss, all of which can be involved in this experience. Participants revealed that their caregiver needs are usually not recognised by health service staff, and most expressed a desire for more recognition from health professionals for the important role they play in supporting the independence of the person in their care. The study also identified that participants tended to be more reliant on informal networks of support for practical assistance and other support. Findings on the experience, perceptions and support needs of family carers of people with lifelong disability provide valuable information of great relevance to rehabilitation practice.

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The long-term consequences of partnership dissolution for support in later life in the United Kingdom

There has long been an interest in the United Kingdom about whether and how changes in family life affect support for older people, but nevertheless the consequences of partnership dissolution for late-life support have been little researched. Using data from the British Household Panel Study (1991–2003), this study investigated the longitudinal association between partnership dissolution and two types of support for 1,966 people aged 70 or more years: (i) informal support from children in the form of contacts and help (e.g. household assistance including care), and (ii) formal support from community care services (i.e. health visitor or district nurse, home-help and meals-on-wheels). The paper also examines the level of reported support among: (i) all parents aged 70 or more years and (ii) 1,453 unpartnered parents in the same age group (i.e. those lacking the most important source of support in later life: a spouse). We found diversity in the experience of partnership dissolution in the past lives of people aged 70 or more years. Patterns of support varied by the respondent's age, whether partnered, the timing and type of partnership dissolution, and by gender, having a daughter and health status. Overall, however, partnership dissolution did not show the expected detrimental relationship with later-life support. Health needs and increasing age were strongly associated with increases in contact and informal and formal help, regardless of family history.

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Which outcomes should we measure in adult epilepsy trials? The views of people with epilepsy and informal carers

Objective: So that informed treatment decisions can be made, clinical trials need to evaluate treatments against domains that are important to people with epilepsy (PWE), their carers, and clinicians. Health professionals have identified domains of importance to them via the International League Against Epilepsy's Commission on Outcome Measurement (COME). However, patients and carers have not been systematically asked.

Methods: Via the membership of the British Epilepsy Association, we recruited and surveyed 352 PWE and 263 of their informal carers. They were presented with 10 outcome domains (including the 5 identified by COME) and asked to rate their importance using a 9-point Likert scale. They were also asked to identify any additional domains of importance.

Results: The patients' mean age was 49 years, the median number of years since diagnosis was 20, and 65% had experienced seizures in the prior 12 months. Most carers were the spouse or parent. Patients' and carers' mean ratings indicated that their outcome priorities were similar, as were those of patients who had and had not experienced recent seizures. There was consensus among patients that 6 domains were of critical importance. These included the 5 identified by COME (namely, and in order of importance, the effects of the treatment on “Seizure severity”, “Seizure frequency”, “Quality of life”, “Cognitive function”, and “Adverse events”), as well as one additional domain (“Independence/need for support”). There was consensus among carers that the 5 COME domains were also critically important. They, however, identified 3 further domains as critically important. These were the effects of the treatment on patient “Depression”, “Anxiety”, and “Independence/need for support”.

Conclusions: Our study found some overlap between the priorities of PWE, carers, and health professionals. They, however, highlight additional areas of importance to patients and carers. Our results could inform a core outcome set for epilepsy that represents the domains that should be reported as a minimum by all trials. This could promote trials which produce meaningful results and consistency in measurement and reporting.

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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Gender differences in intergenerational care in European welfare states

Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.

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Caregiver roles in families affected by Huntington's disease: a qualitative interview study

Aim: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family.

Methodology: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation.

Results: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members and the hierarchical order between spouses, partners, and parents and children. The relationship between spouses and partners changed during the course of the disease. A reciprocal relationship was difficult to maintain, as the role as carer overshadowed other roles. Children of an affected parent could compensate for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family.

Conclusions: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to care for and support individuals in their role as family members and caregivers in different stages of the disease and family life cycle.

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From home to 'home': situating emotions within the caregiving experience

Emotions are an integral part of our daily lives, affecting who we are and how we react to the people and places around us. This emotiospatial hermeneutic has particular resonance for understanding informal carers' experiences of transitions in the place of care. Yet little work has explicitly addressed the link between emotions, care, and place. That which has focuses largely on community and the home, and largely ignores the transition of care from the home to care-home settings. Drawing on carer narratives from New Zealand, this paper examines how emotion and the affective entity of informal caregiving for frail older people is manifest and experienced as the site of care shifts from the private space of the home to the semipublic space of the residential care home. In doing so, the paper contributes, first, to conceptual debates around the geography of emotions, and, second, to a deeper understanding of how informal carers seek to create new identities for themselves as carers in the new place of care. Finally, drawing on debates around the meaning of home, I consider the extent to which informal carers can feel ‘at home’ caring for their spouse or close family member within care-home settings.

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Mapping the future of family care: receipt of informal care by older people with disabilities in England to 2032

Many long-term care systems in economically developed countries are reliant on informal care. However, in the context of population ageing, there are concerns about the future supply of informal care. This article reports on projections of informal care receipt by older people with disabilities from spouses and (adult) children to 2032 in England. The projections show that the proportions of older people with disabilities who have a child will fall by 2032 and that the extent of informal care in future may be lower than previously estimated. The policy implications, in the context of the Dilnot Commission's report, are explored. 

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Continuing to pay : the consequences for family caregivers of an older person's admission to a care home

This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsed than had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner’s care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK’s means-testing rules, daughters and sons were often penalized because a parent’s assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter’s or son’s family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.

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Caring and Retirement: Crossroads and Consequences

As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.

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The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.

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A terminal diagnosis: the carers' perspective

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.

Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

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Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

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The influence of social support on caregiver coping

Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.

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Burden and happiness in head and neck cancer carers: the role of supportive care needs

Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).

Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness

Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.

Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

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Life after caring: The post-caring experiences of former carers

This qualitative study was informed by grounded theory and data were gathered primarily through semi-structured in-depth interviews with thirty-seven theoretically sampled former carers. They were all white British, lived in the East Midlands and were predominately over sixty (68 per cent) and female (70 per cent). With the exception of one, all had cared for a close relative, 65 per cent having cared for a partner/spouse. Most of their dependants were older adults and each case the cessation of caring had coincided with the death of the dependant. The findings showed that post-caring life for the interviewees had an identifiable trajectory with three phases—the ‘post-caring void’, ‘closing down “the caring time”‘and ‘constructing life post-caring’. Each of these phases involved a distinct set of experiences. In addition, the study established that 70 per cent of those in the sample had cared more than once. Thus, two new concepts—'the post-caring trajectory' and the ‘serial carer’—were developed to reflect these findings. Suggestions are made about ways in which policy, practice and further research can be developed in order to ensure there is effective provision for those who have ceased caring.

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Occupational changes in caregivers for spouses with stroke and aphasia

Introduction: Stroke is a leading cause of disability worldwide. While health services focus on the needs of diagnosed persons, families provide extensive informal care with diverse effects on daily life and health. Understanding caregivers' experience is critical to support their health and sustained contributions. This exploratory study examined how caring for partners with stroke and aphasia impacts caregivers' activities, identifying possible differences according to race/ethnicity through the lens of occupation.

Method: Mixed methods identified the occupational impact of caring for a partner with stroke and aphasia. Twelve participants completed the Carer Communication Outcome After Stroke, Occupational Gaps Questionnaire, Activity Card Sort, and a semi-structured interview.

Findings: The impact of aphasia on caregivers varied greatly. The Occupational Gaps Questionnaire revealed gaps in cultural activities. On the Activity Card Sort, caregivers experienced occupational loss, primarily in low-demand leisure and social activities. Six themes emerged from the interviews: personal factors, finding new equilibrium, participation barriers, compensations for aphasia, uncertainty, and obligations. Trends differed somewhat by race/ethnicity.

Conclusion: Findings have implications for health professionals working with individuals with stroke and aphasia. The caregivers' experience deserves attention to support their quality of life and wellbeing, which can promote sustained assistance for their relatives with stroke.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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What are the factors that facilitate or hinder resilience in older spousal dementia carers? a qualitative study

Objectives: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as ‘the process of negotiating, managing and adapting to significant sources of stress or trauma’. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework .

Method:Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England.

Results: Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care.

Conclusion: There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

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Health in everyday life among spouses of haemodialysis patients: a content analysis

Despite the fact that haemodialysis requires that spouses support and assist their partner during the treatment period, little attention has been focused on their health. The aim of this study was to explore experiences of health in everyday life among spouses of haemodialysis patients. The study had an explorative and descriptive design based on content analysis. Thirteen participants were interviewed in their home without the presence of the patient. The results show that arduousness was experienced when that spouses' everyday life was taken up by caring for the patient at the expense of his/her own health. Spouses exhibited stamina and neglected their own health when focusing on the patient and minimising their own condition. Independence in everyday life revealed that spouses who cared about themselves and looked after their own health experienced relaxation and happiness, which protected their health. Clinical interventions should include an assessment of the spouses' health and everyday life in order to plan the care to ensure that it is directed towards increasing their independence. Instruments need to be developed that assess when and how spouses experience the greatest sense of well-being, if they have scope for relaxation and recovery, and what type of support they require in their everyday life.

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Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being

Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.

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Falling in Parkinson's disease: the impact on informal caregivers

Purpose: The aim of this study was to explore the views and experiences of the informal caregivers of repeat fallers with Parkinson's disease. Method: Individuals were invited to participate in this study if they were the informal caregiver of a person with Parkinson's disease (PD) who had experienced more than one fall in the previous 12 months. Participants were interviewed about their experience of managing falls using a semi-structured interview schedule. Interview data were transcribed and analysed using thematic analysis. Results: Fourteen caregivers (11 female) participated in the study. All were marital partners of a repeat faller with Parkinson's disease. The average age of the participants was 69.9 years (44 - 79). Their partners had had PD for an average of 16.7 years. Six major themes emerged from the analysis of the interview data, four directly related to falls management (the falls; consequences of the falls for the person with PD; caregivers' experiences of falls; consequences of falls for the caregiver). The majority of caregivers were frightened about their spouse falling. They used a number of methods of getting their spouse up from the floor but often injured themselves as a consequence. Caregivers highlighted the high level of care they provided and the social and psychological impact of the condition on them. They received limited help in looking after their spouse and little information about falls or about the disease in general. Conclusion: Caregivers in this study felt unprepared for their role and expressed a need for more support and advice, especially about managing falls.

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Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms

Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. 

Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly assessed with the Geriatric Depression Scale prior to and following bereavement. Random effects regression growth curve analyses examined the effects of treatment group and bereavement while controlling for other variables.  

Results: The death of the care recipient led to reductions in depressive symptoms for both caregiving groups. Enhanced support intervention led to lower depressive symptoms compared with controls both before and after bereavement. Post-bereavement group differences were stronger for caregivers of spouses who did not previously experience a nursing home placement. These caregivers maintained these differences for more than 1 year after bereavement. Caregivers who received the enhanced support intervention were more likely to show long-term patterns of fewer depressive symptoms before and after bereavement, suggesting resilience, whereas control caregivers were more likely to show chronic depressive symptoms before and after the death of their spouse. 

Implications:  Caregiver intervention has the potential to alter the long-term course of the caregiving career. Such clinical strategies may also protect caregivers against chronic depressive symptoms that would otherwise persist long after caregiving ends.

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Caring as worrying: the experience of spousal carers

Background.  With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.

Aim.  The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.

Methodology.  An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.

Findings.  This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.

Conclusion.  Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.

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Active living: what works

Reports on a study which took place at a memory clinic in the south west of England to investigate the reasons why people with dementia and their carers do, and do not, stay physically active. The study also wanted to find out which activities would be acceptable and sustainable for people with dementia and their carers. Five people living with Alzhiemer's Disease and their five spouse carers were interviewed using semi-structured interviews. Barriers and facilitators to physical activity were linked to both the progression of dementia and the relationship between carers and the person with dementia. Other issues identified include time constraints; previous activities undertaken; social acceptance and general attitudes towards dementia. The findings highlight the need to understand the attitudes, routines, previous activities and abilities of people with dementia.

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The inter-relationship between formal and informal care: a study in France and Israel

This study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.

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Assistance of family carers for patients with COPD using nebulisers at home: a qualitative study

Objective For many patients with chronic conditions, such as chronic obstructive pulmonary disease (COPD), the assistance of family carers with medicines is vital for optimal treatment outcomes. The aim of this study was to identify the assistance carers provide to patients with COPD using nebuliser-delivered therapy at home, and the problems experienced that may impact on the safety and effectiveness of therapy and contribute to carer burden.

Methods A cross-sectional, qualitative descriptive study was conducted with participants recruited from primary and intermediate care. Home interviews were conducted with 14 carers who assisted a family member with COPD using a nebuliser. Qualitative procedures enabled analysis of nebuliser-related activities and problems experienced by carers.

Results The carer sample included 10 female and 4 male carers, with a mean age of 61 years: 11 spouses and 3 daughters. They had assisted patients with use of their nebuliser and associated medications for, on average, 4.5 years. Assistance ranged from taking full responsibility for nebuliser use to providing help with particular aspects only when required. Nebuliser-related activities included assembling and setting up equipment, mixing medicines, operating the device, dismantling and cleaning equipment. Difficulties were described with all aspects of care. Carers reported concerns about medication side effects and the lack of information provided.

Conclusions The study revealed the vital role of carers in enabling effective therapy. The wide-ranging responsibilities assumed by carers and problems experienced relate to all aspects of COPD management with nebulisers, and have a potential impact on treatment outcomes and carer burden. A systematic approach to addressing carers’ needs and prioritising support would be anticipated to have positive consequences for patients, carers and health services.

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Class, caring and disability : evidence from the British Retirement Survey

There has been an increasing interest in the caring responsibilities of middle generation individuals as numerous studies have noted the continuing family obligations of people in later life. Employing data from the United Kingdom Office of National Statistics Retirement Survey of 1988/89, we examined social class differentials in the provision of care by 55–69 year olds. Our results show few social class differences in the provision of co-resident care to a parent (among those aged 55–69 in 1988/89 with at least one living parent), but significant social class differences in the provision of care to a spouse. Working class individuals were more likely to be caring for a spouse than their middle class counterparts because of the higher prevalence of disability among this group.

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Hip fracture patients' cognitive state affects family members' experiences - a diary study of the hip fracture recovery

Background: Many patients with hip fractures suffer from dementia disease, which has shown to affect the outcome of recovery strongly, as well as care and treatment. As most hip fracture patients are discharged home early after surgery, caregiving often falls on family members – spouses, daughters, sons, or even neighbours become informal carers.

Aim: To explore how hip fracture patients’ cognitive state affect family members’ experiences during the recovery period.

Methods: Eleven diaries written by family members’ of hip fracture patients were analysed by means of qualitative content analysis.

Findings: The analysis generated two main categories with four categories. The first main category was; ‘Being a family member of a cognitively impaired patient’ with the categories ‘Dissatisfaction with lack of support’ and ‘Emotional distress due to the patient’s suffering’. The second main category was ‘Being a family member of a cognitively intact patient’ with the categories ‘Satisfaction with a relative’s successful recovery’ and ‘Strain due to their caring responsibilities’. Being a family member of a patient with cognitive impairment and a hip fracture meant being solely responsible for protecting the interests of the patient; in regard to care, rehabilitation and resources. The family members were also burdened with feelings of powerlessness and sadness due to the patients’ suffering. On the contrary, family members of cognitively intact hip fracture patients had positive experiences. The family members expressed pleasure from seeing their close ones make progress. However, when the healing process was delayed this led to strain on the family members.

Conclusions: The findings suggest the hip fracture patient’s cognitive state is more decisive than the hip fracture itself for the family members’ experiences.

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Care by spouses, care by children : projections of informal care for older people in England to 2031

The future market costs of long-term care for older people will be affected by the extent of informal care. This paper reports on projections of receipt of informal care by disabled older people from their spouses and (adult) children to 2031 in England. The paper shows that, over the next 30 years, care by spouses is likely to increase substantially. However, if current patterns of care remain the same, care by children will also need to increase by nearly 60 per cent by 2031. It is not clear that the supply of care by children will rise to meet this demand. 

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Family caregivers' distress levels related to quality of life, burden, and preparedness

Objective: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care.

Methods: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis.

Results: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I–III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress.

Conclusion: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer. Copyright © 2014 John Wiley & Sons, Ltd.

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Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness

Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose ‘biographical we’ as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.

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Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service

Background: Too little is currently known about the prevalence of and risk factors for depression and carer strain among informal carers of community-dwelling elderly mentally ill. This study seeks to assess the prevalence of depression, using the Geriatric Depression Scale-15 (GDS-15), the degree of carer burden/strain, and their risk factors among the primary informal carers of patients referred to our community-based old age psychiatry service.

Methods: A cross-sectional study design was used, with the subjects comprising 100 primary informal carers of patients who live at home and were referred to our service. The main carer measures were the GDS-15 and an adapted version of Gilleard's Strain Scale. Patients were assessed the Clifton Assessment Procedure for the Elderly–Survey version, the GDS-15 and the Mini-mental State Examination.

Results: Depression was found in 21% of the carers (a score of 5 or more on the GDS-15). The more problem behaviors identified and the greater the functional impairment of the patient, the higher the strain score deciles and the more likely the carer was to be depressed. Spouses were associated with lower carer strain scores. Patient diagnoses did not affect carer depression or carer strain.

Conclusion: We found high levels of depression in the primary carers of community-dwelling patients attending an old age psychiatric service. The patients' behavior and their cognitive and functional ability conferred greater risk of carer depression or strain than their diagnosis. These risk factors may help identify carers at risk of strain and depression.

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Is cancer care dependent on informal carers?

Over the past half century, medical care has become less institutionalised, more autonomous, equitable and less costly. This has led to a shift from hospital-based delivery to community care. This paper examines the experiences of Canberra-based carers following this shift using interview data from a longitudinal qualitative study of 32 informal carers of a spouse with cancer. Cancer patients experienced poorly coordinated care. When carers observed the effects of errors and miscommunication on patients, they felt compelled to coordinate patient care. Interview data suggest that informal carers of cancer patients are relied upon to manage patient care at home and in hospitals, but are not supported in undertaking this responsibility. This implies that carers should be a far more central focus in cancer care reform strategies.

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The time perspective of the Alzheimer caregiver

Purpose of the study: Caring for a spouse diagnosed with Alzheimer’s disease holds potentially severe negative consequences for the physical and psychological well-being of the caregiver. As it is known that the maintenance of a flexible time perspective holds benefits for individual health, the main purpose of this study was to identify and describe the changes in the time perspective of persons caring for a spouse diagnosed with Alzheimer’s disease.

Design and Methods: The SELE instrument was administered in order to shed light on the time perspective of a total of 40 participants. A criterion group design was used, and a mixed methods approach adopted during the collection and analysis of data.

Results: The results of this research project highlighted the existence of a number of important differences regarding the time perspective of caregivers and non-caregivers. The time perspective of caregivers was severely affected by the caregiving situation and the accompanying grieving process. This proved to be one potential avenue through which the caregiving situation has its negative effect on caregivers’ well-being.

Implications: Owing to the usually insufficient funding for the care of demented patients, research regarding the identification of potential cost-effective methods to enhance the resilience of caregivers is of the essence. Maintenance of a balanced time perspective might prove to be to the benefit of caregiver psychological well-being.

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Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: a meta-synthesis of qualitative research

Purpose: This meta-synthesis was conducted to explore qualitative spousal accounts of coping and adaptation to caregiving when their partner experienced a stroke. Method: Electronic databases were searched systematically and inclusion and exclusion criteria were applied. The meta-synthesis was conducted using guidance from Sandelowski and Barroso to extract salient data relating to coping and adaptation. Results: Twelve papers were identified for inclusion and seven themes resultant themes were extracted: Seeking information; Searching for own space and well-being; Suffering in silence; Putting one’s own needs aside; Adapting to a changed role; Social support and Hope and Optimism: instilling a positive focus. Conclusions: The findings suggested spouses adopt a range of adaptive coping strategies although several barriers to these were also identified and discussed in relation to a number of clinical implications. The limitations of this meta-synthesis were discussed, together with recommendations for future research.

Implications for Rehabilitation: 

  • Respite care for partner-carers is important for their well-being and there is a need to improve the availability and quality of such provision.
  • It is important to provide stroke-related information and training in practical care tasks, preferably before their partner is discharged home from hospital, in order to avoid leaving spouses feeling vulnerable and unprepared.

  • The positive adapting mechanisms identified within this review can be drawn on by clinicians to inform their interactions with stroke spousal carers and to advise them in strategies which have helped their counterparts.

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The burden of informal care for Alzheimer's Disease: carer perceptions from an empirical study in England, Italy and Sweden

Dementia of the Alzheimer type and related disorders greatly impact not only on the lives of sufferers but also on their unpaid informal carers, who usually are spouses or children. Carers are more likely to suffer from stress, take prescribed medication and visit their physicians compared with non-carers (Burns and Rabins, 2000). Social isolation that can occur in caregiving may mean that carers may only come to the attention of formal support services when a crisis occurs and informal care arrangements break down (Wenger, 1994). Increasing our understanding of the burden on informal care, and how this is affected by the use of support services, may contribute to the future development of services. As part of a European project (Sassi and McDaid, 1999), an empirical study was undertaken to measure aspects of the burden borne by informal carers of people with probable Alzheimer's disease living in the community in England, Italy and Sweden. Qualitative data on the caring experience and its economic impact were [...]

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Freedom and Imperative Mutual Care Between Older Spouses With Physical Disabilities

This article explores mutual caregiving between older spouses aging with physical disabilities. Nine older couples, where both partners had lived long lives with physical disabilities, were interviewed as dyads about mutual caregiving. The couples not only had access to different kinds and degrees of formal support but also provided mutual care to each other in a variety of ways. Interview coding using grounded theory led to two overarching categories from which motivation for mutual caregiving could be understood. These categories were Mutual care as freedom and Mutual care as imperative. The results extend understanding about how older couples with disabilities attached meaning to their mutual caregiving, and why mutual care was sometimes preferable, despite the availability of other sources of help and despite practical difficulties of providing this help. These findings suggest that health care professionals need to be sensitive to the dynamics of the couple relationship and carefully explore the couple’s preferences for how formal support can best be provided in ways that honor and sustain the integrity of the couple relationship.

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Abuse of female caregiver by care recipients: another form of elder abuse

This article focuses on the abuse of ageing caregiving women (55 years or older) by the spouses or parents for whom they provide care. Data presented were derived from a study of the dynamics of family caregiving focusing on Mexican American and Anglo caregiving dyads. Analysis focused on identifying correlates of abuse from a group of variables that represented the structure and context of caregiving. Data suggests the problem is not trivial and the interactional context of caregiving is the most promising aspect for explanation, intervention, and prevention.

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The needs of carers of people with multiple sclerosis: a literature review

People with multiple sclerosis depend heavily upon their families and other informal carers as they receive limited support from health-care professionals or health-care services, Adopting the carer role results in a life-changing experience, which may bring rewards and challenges to the carer. This paper reviews the research addressing the experiences of carers of people with multiple sclerosis published between 2002 and 2007 building upon an earlier review. The literature suggests that carers have needs across various domains and that spouses/partners have particular needs. Much of the evidence has limited generalizibility although the geographical spread of the evidence indicates considerable consistency of need. The review describes ongoing carer needs which require supportive care and provides the basis for the development and testing of carer interventions for use by health-care, professionals.

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Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention

OBJECTIVE: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered.

DESIGN AND SETTING: Caregivers of stroke patients were recruited in four regions of the Netherlands. A total of 212 caregivers were interviewed. Multiple stepwise regression analysis was performed to determine the effects of patient and caregiver characteristics, resources, coping strategies and duration of the caregiver role on caregiver strain, mental well-being and vitality.

SUBJECTS: The majority of the caregivers were female spouses. Their mean age was 64 years, and their socioeconomic status middle class. Stroke had occurred about 3.5 years ago on average.

MAIN OUTCOME MEASURES: The following main outcome measures were used: the Caregiver Strain Index, and two scales of the Short Form-36 to measure caregivers' mental well-being and vitality.

RESULTS: Severe cognitive, behavioural and emotional changes in the patient constitute the main risk factors for caregiver burn-out. Women, younger caregivers and caregivers in poor physical health were also identified as risk groups. Caregivers with high perceived self-efficacy, satisfied with social support, and frequently using the coping strategy confronting, experience less strain, higher mental well-being and greater vitality. Duration of the caregiver role does not influence caregivers' strain, mental well-being or vitality.

CONCLUSIONS: Women, younger caregivers, caregivers in poor physical health, and caregivers of patients with severe changes are at risk of burn-out. Support programmes should focus on self-efficacy, social support, and the coping strategy confronting. No specific moment could be identified at which support programmes should be offered.

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A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.

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Informal caregivers' participation when older adults in Norway are discharged from the hospital

This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co-operation between families and hospitals when elderly patients are discharged back to the community.

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Uncovering an invisible network of direct caregivers at the end of life: A population study

Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends.

Aim: This population study aims to define the people who actually provide care at the end of life.

Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and ‘expected’ death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence.

Results: People of all ages indicated they provided ‘hands on’ care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer.

Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on ‘next-of-kin’ status in research will not identify them.

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People aged 65 and over: results of a study carried out on behalf of the Department of Health as part of the 2001 general household survey

This report presents an analysis of data collected from the General Household Survey (GHS) from April 2001 to March 2002 relating to people aged 65 and over. The General Household Survey (GHS) is a multi-purpose continuous survey carried out by the National Statistics, which collects information on a range of topics from people living in private households in Great Britain. The GHS provides a rich source of information about people aged 65 and over.
Information was collected from people living in private households and therefore excludes those in communal establishments such as residential or nursing homes which only counts for 4% of people aged 65 and over. The survey asked people aged 65+ about their living circumstances, their health, their ability to perform a range of domestic and other tasks, and the use they make of health and social services. The information collected has enabled the GHS to present regular snapshots of older people's lives and to examine how these have changed over the years.

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Elevated depressive symptoms among caregiving grandparents.(living with chronic illness)

Objective: To determine whether caregiving grandparents are at an increased risk for depressive symptoms.

Data Source: National sample (n=10,293) of grandparents aged 53–63 years in 1994, and their spouse/partners, who took part in the Health and Retirement Study (HRS).

Study Design: Grandparents were surveyed in 1994 and resurveyed every two years thereafter, through 2000. Over that period, 977 had a grandchild move in or out of their home. These grandparents served as their own controls to assess the impact of having a grandchild in the home.

Data Extraction: Depressive symptoms were measured using an abbreviated form of the Center for Epidemiologic Studies—Depression (CES-D) scale, scored 1–8, with a score ≥4 associated with depression “caseness.”

Principal Findings: At the time of the 1994 interview, 8.2 percent of grandparents had a grandchild in their home. However, there was substantial variation across demographic groups (e.g., 29.4 percent of single nonwhite grandmothers, but only 2.0 percent of single white grandfathers had a grandchild in residence). The impact of having a grandchild in the home varied by grandparent demographic group, with single grandparents and those without coresident adult children experiencing the greatest probability of elevation in depressive symptoms when a grandchild was in residence. For example, single nonwhite grandmothers experienced an 8 percentage point increase in the probability of having a CES-D score ≥4 when a grandchild was in their home, compared to when a grandchild was not in their home, controlling for changes in health care, income, and household composition over time (95 percent CI=0.1 to 15.0 percentage points).

Conclusions: Grandparents have a greater probability of elevated depressive symptoms when a grandchild is in their home, versus when a grandchild is not in their home. Single women of color bear a disproportionate burden of the depression associated with caring for grandchildren. Since an increasing number of grandparents function as a de facto safety net keeping their grandchildren out of formal foster care, identifying strategies to support the health and well-being of caregiving grandparents is an emerging priority.

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Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.

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A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.

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When Harry met Barry, and other stories: a partner's influence on relationships in back pain care

This study forms part of a longitudinal investigation of pain, disability and health care use in primary care low back pain consulters. Sixteen purposively sampled patients and their health care professionals were interviewed about experiences with back pain and their therapeutic relationships. This case study draws on the accounts of one patient, his wife, and three health care professionals and explores the role of the informal carer in back pain care. The interview with the patient and his wife highlights the dynamics of a co-constructed narrative of back pain. The joint narrative is fundamentally supportive of the patient's condition, yet his wife's preference for a proactive approach to health care is undermined by the patient's unquestioning respect for health professionals. In addition, the patient's limited expression—of his suffering and his feelings regarding care received—results in less beneficial care where opportunities remain unfulfilled and problems unresolved. His wife's role as narrator of his pain provokes different reactions from health professionals and these are discussed. Analysis reveals a positive and mediating role for informal carers within the provision of health care. However, the construction of the patient's limited expression in opposition to his wife as an ‘expert carer’ raises issues around these roles in the therapeutic encounter that require further exploration. To use supportive relationships effectively there is a need to better understand the interplay between the patient and carer roles, how these roles are negotiated in the health care consultation, and the possible contradictions that this poses.

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A grounded theory longitudinal study of carers’ experiences of caring for people with dementia

Introduction: Increasingly the provision of care for older people with dementia has shifted from institutions to the community. This has resulted in an increase in burden and a reduction in autonomy for those who care for these individuals.

Aims: This study sought to identify, describe and explore the changes in the carers’ experiences of looking after a relative living with dementia, and the effects of caring on the carers’ autonomy and health over time.

Research Methods: A longitudinal, grounded theory approach in three phases was used. In-depth interviews were conducted with six spouses at the beginning, at six months and at eighteen months. A constant comparative analysis of taped and transcribed interviews was used.

Findings: Four categories emerged: My Life Changed, Commitment, Responsibility and Duty, and Support. The core category My Life Changed was identified as representing the beginning of the caregiving journey; and the learning from experience that occurred as a consequence of that journey, offering a new perspective on the experience of carers. Commitment refers to a deepened and sustained element; Responsibility and Duty increases over time and finally Support refers to the fluctuating nature of help provided by formal and informal sources. All participants experienced changes in the caregiving journey; the degree and nature of necessary adaptations varied.

Conclusions: A Theory of Caring emerged, but what changes were experienced did not appear to conform to any fixed pattern. All carers learned by experience to manage their situations. For all carers their autonomy and health was challenged.

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Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Background: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.

Methods: We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.

Results: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.

Conclusions: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

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The effects of nursing home placement on the perceived levels of caregiver burden

Providing care for an ageing parent can be one of the most fulfilling life experiences for an adult child. It can also be one of the most exhausting physically, emotionally and financially. A carer experiences psychological and emotional changes when their dependent parent or spouse is placed into formal care. This research project uses the Montgomery Borgatta Caregiver Burden Scale, amended with a questionnaire, in a self-administered, anonymous survey to explore perceptions of caregiving burden before and after the nursing home placement periods. This research showed that numerous factors influence carers' perceptions of burden and the quality of relationships among family members.

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Does availability of informal care within the household impact hospitalisation?

This study assesses the effect of having informal support available at home on inpatient care use in Switzerland. The main contributions are to consider the availability of care regardless of its source, measured by multiple-adult living arrangements, and to examine this effect by type of inpatient care and source of potential support. A two-part model with region and time fixed effects is estimated to determine the impact of informal care availability on the likelihood of hospitalisation and length of stay, conditional on hospitalisation. The analysis is conducted on a sample of individuals aged 18+ from four waves of the Swiss Household Panel survey (2004–2007). Overall, availability of informal care has no impact on the likelihood of hospitalisation but does significantly reduce length of stay by 1.9 days. Available support has no effect on the shortest stays (up to 10 days), but has a significant impact on acute care stays up to 30 days and longer stays. Additionally, the effect does not significantly vary whether the source of informal support is a spouse only, a spouse and other adults, or other adults only. These results indicate that social changes leading to an expansion in the proportion of one-person households may increase future inpatient care use.

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In sickness and in health: experience of caring for a spouse with MS

Background People are not expected to die from multiple sclerosis although, as the condition progresses over a period of time, some people become increasingly disabled and will require assistance with all activities of daily living. Their partners invariably carry out these tasks. Objective To gain a deeper understanding of the experiences of the partner living with and caring for a spouse disabled by multiple sclerosis. Methodology In a qualitative study, eight partners who live and care for a person with multiple sclerosis were interviewed using a semi-structured questionnaire to explore their experience of their role. Results The interview transcripts were analyzed using a thematic framework approach. Codes, themes and five categories were identified, which were worry, planning, frustrations, commitment to marriage and coping strategies. These categories were examined using quotes from the transcripts as evidence. Conclusion This qualitative study identified that these couples had been married for at least 20 years before disability of the spouse significantly affected their lifestyle. Partners felt obliged to continue in their caring role due to a sense of duty and commitment of marriage. Partners felt a sense of loss as they prioritized the health and needs of their spouse above their own and, finally, partners lost their identity as husband/wife as they were called ‘the carer’. Partners felt out of control due to the unpredictable and progressive nature of MS and because it consumed their life 24 hours every day. Partners often felt guilty at not being satisfied with their life and wanting some independence

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Effects of family caregivers on the use of formal long-term care in South Korea

Aim: We investigated whether the presence and characteristics of a family caregiver affect the use of formal long-term care under the new Korean long-term care system.

Background: In July 2008, Korea introduced public long-term care insurance, a form of social insurance, in order to cope with the reality of the growing elderly population and the increasing demand for long-term care.

Methods: The family caregivers of 271 applicants for long-term care insurance who had a caregiver and 36 applicants without a caregiver living in one city participated in this cross-sectional study. Data were collected from November 2010 to June 2011 using self-report questionnaires. Variables included the applicant's gender; age; physical and cognitive function; type of long-term care used; presence and type of family caregivers; caregiver's gender, age, education level, marital status, and employment status; and service use covered by long-term care insurance. Logistic multiple regression was used.

Results: The effect of the presence and characteristics of a family caregiver on the use of a long-term care facility was significant. A nursing home was used for care more frequently when the applicant had no family caregiver. An elderly subject who had a spouse as a caregiver used home healthcare services more often than nursing home services.

Conclusion: The decision to use formal services may depend not only on the care level required by the applicant, but also on the presence and type of caregivers. To successfully implement the new long-term care insurance system, consideration of the caregiver situation should be included in policy development.

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Carers living with stroke survivors who were incontinent had minimal social interaction and felt socially isolated

QUESTIONWhat are the social consequences for informal carers who live with stroke survivors who have urinary incontinence?DESIGNIn-depth interviews analysed by constant comparison.SETTINGHomes of stroke survivors.PARTICIPANTSPurposive sample of 20 carers 51-86 years of age (65% women) who lived in the same house and provided care to stroke survivors with incontinence for 7 months to 18 years without remuneration; most were spouses, partners, or daughters of care recipients (CRs). Carers were recruited from a UK Medical Research Council Incontinence study and a local Family Support Office.METHODSCarers were interviewed for 45-90 minutes on topics including physical role of carer, effect of caring for someone with stroke on life of carer, onset of stroke, health problems related to stroke, urinary incontinence and leakage, and the CR's family. Interviews were tape recorded (except for 1 written record), transcribed verbatim, coded hierarchically, and analysed for themes.MAIN FINDINGSStrategies for becoming [...]

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Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA ‘Instrument for Assessing Home-Based Care Arrangements for People with Dementia’) was developed and distributed in a provincial–rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.

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Networks of informal caring: a mixed-methods approach

Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.

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Health-related quality of life and attitudes to long-term care among carers of older people using social services

Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.

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There's no apprenticeship for Alzheimer's : the caring relationship when an older person experiencing dementia falls

Older people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

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Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis

Background Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS). Objectives To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden. Methods Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score. Results Carers (61% women, mean age 60.2years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p = 0.009), and living with the PwSMS (p = 0.02) were independent predictors of perceived burden.  Conclusions Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.

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Correlates of intrusion and avoidance as stress response symptoms in family carers of patients suffering from dementia

AIMS: To explore intrusion and avoidance in family carers of dementia patients. METHOD: We studied 196 family carers of 196 home-dwelling dementia patients. Carers were assessed by the Impact of Events Scale (IES), the Geriatric Depression Scale (GDS), the State Trait Anxiety Inventory (STAI) and the Distress scale of the Neuropsychiatric Inventory (NPI-D), and patients with the Mini Mental State Examination (MMSE), the Disability Assessment for Dementia (DAD), and the Neuropsychiatric Inventory (NPI). RESULTS: Twenty carers (10%) scored above 19 on the intrusion and avoidance subscales of the IES, whereas 90 (47%) scored above 8 on both subscales. This moderate to high stress response was independently explained by being a spouse (OR 3.74 (95% CI 1.81-7.74)), high scores on GDS (OR 1.12 (95% CI 1.06-1.18) per unit increase) and high score on NPI-D (OR 1.05 (95% CI 1.01-1.09) per unit increase). CONCLUSIONS: Spouses and other family carers having daily contact with patients with dementia experience moderate to high levels of intrusion and avoidance. These symptoms are associated with symptoms of anxiety, distress and depression and should be taken into account when tailoring interventions for carers. Copyright (c) 2008 John Wiley & Sons, Ltd.

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A support group for caregivers of patients with frontotemporal dementia

Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.

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Does caring for your spouse harm one's health? Evidence from a United States nationally-representative sample of older adults

The purpose of this article is to investigate the relationship between spousal care-giving and declines in functioning and self-rated health among older care-givers. The authors used data from the 2000 and 2002 waves of the United States Health and Retirement Study, a biennial longitudinal survey of a nationally representative cohort of adults aged 50 or more years. Two outcomes were examined, declines in functioning and declines in self-rated health. Care-givers were classified into three groups: no care-giving, less than 14 hours of care-giving per week, and 14 or more hours care-giving per week. To assess declines in functioning, two summary scores were created of limitations in basic and instrumental Activities of Daily Living. To assess declines in self-rated health, we compared responses from 2000 and 2002. In the fully adjusted models, care-giving hours did not have an independent effect on declines in functioning or self-rated health. The relationship between care-giving hours and declines in functioning and self-rated health is probably attributable to socio-demographic characteristics, mainly age. The findings suggest that spousal care-giving does not of itself harm functional health or perceived health among older adult care-givers. Understanding the differential effects of these socio-economic characteristics with care-giving hours on health will be useful in promoting the health of older adult care-givers and treating their disorders.

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The 'Caring in later life' report: a secondary analysis of the 1995 General Household Survey

Caring in Later Life is a review of the needs and roles of older carers (Milne et al, 2001). It brings together a wide‐ranging review of academic and policy literature with an original meta‐analysis of the 1995 General Household Survey (OPCS, 1995). This paper focuses on the findings of the GHS analysis. The picture of older carers that emerges is significantly different from that of carers overall.It is clear that older carers constitute a large and growing number of the carers and represent an increasingly large proportion of the total number of UK carers. They can be distinguished from other groups of carers in a number of ways: older carers are more likely to live with the person they care for, caring is likely to take place within the context of a long term relationship, dementia is a dominant feature and carers are more likely to be involved in intimate and personal care. Many also have health problems of their own. The analysis confirms a distinction between older carers who offer support on a co‐resident basis and those who are extra resident. There is clearly a high level of devotion to caring amongst many co‐resident carers, with many providing intensive care over long periods of time with little or no support from services. Most of these carers are spouses. The authors suggest that more should and can be done by policy and services to improve the health and quality of life of older carers.

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When they don't die: Prognosis ambiguity, role conflict and emotion work in cancer caregiving

Informal carers of cancer patients have high rates of burden, stress, anxiety and unmet needs; yet, some describe caregiving as fulfilling. Building on the work of Thomas and colleagues, this study takes a sociology of emotions approach to understanding variations in carers of cancer patients' emotional experiences, using interview data with 32 carers of a spouse with cancer. Analysis indicates that a clearly terminal (negative) prognosis facilitates clear priorities, unambiguous emotion management and improved social bonds. A more ambiguous (positive) prognosis, that includes a greater chance of survival, fosters role conflict, clashing feeling rules and ongoing guilt within spousal carers. This study highlights the importance of a prognosis to emotion management, underscoring a phenomenon that is likely to grow as survival rates continue to improve and explaining some of the variation in carers' experiences.

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Family caregiving for people with Alzheimer's disease: results of the NYU spouse caregiver intervention study

This article examines the impact caring for a spouse with Alzheimer's disease has on the caregiver. The author, arguing family caregivers often suffer from fatigue, depression, social isolation, anxiety, and physical illness as a result of the stress involved, maintains outside support for caregivers is crucial for their well-being and can benefit the patient.

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His helping hands - adult daughter's perceptions' of fathers with caregiving responsibility

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers “masculine authenticity”, all of them appear to cherish “his helping hands” as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional ‘male activities’ and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

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A dimensional analysis of caregiver burden among spouses and adult children

Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses and adult children, (b) the role of assisting with problem behaviors (PBs) and activities of daily living (ADLs) on each dimension of burden, and (c) the role of each dimension of burden on self-rated health and intention to institutionalize the care receiver. Design and Methods: This study included 280 spouse/partner and 243 adult child caregivers of persons with chronic illnesses. Results: Analysis using 2-group structural equation modeling showed that the factor structure of burden was equivalent for spouses and adult children. For both groups, assisting with ADLs was directly related with objective burden, whereas PBs were directly related to all dimensions of burden. For both groups, stress burden was the only predictor of self-rated health, whereas PBs were significantly linked with intention to institutionalize. However, stress burden among spouses and relationship burden among adult children were significantly linked with intention to institutionalize. Implications: We discuss the research and practice implications of the differing needs of spouses and adult children.

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Effects of gender and employment status on support provided to caregivers

This study was designed to examine the impact of caregiver gender and employment status on laypeople's willingness to support the caregiver. A total of 216 undergraduates were randomly assigned to read 1 of 4 vignettes that described an individual caring for his or her physically ill spouse. Caregiver gender (man or woman) and employment status (full-time employment or retirement) were manipulated. Overall, female participants reported that they would provide higher levels of support than did male participants, particularly with regard to emotional support. Male participants were more likely than female participants to attend to caregiver employment status when rating their level of instrumental support provision. Gender of the caregiver did not exert an effect. Findings are interpreted in light of gender norms that allocate care of sick family members to women. (Original abstract)

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Effectiveness of sensory discrimination training when delivered by family members: a pilot study

The proportion of disabled stroke survivors is increasing. These people may experience loss of sensation that negatively impacts on performance and participation in daily activities. The value of adopting active approaches to rehabilitation is growing; however, high costs and demand over an extended period of time impose limits on therapist-based application. Informal carers and family members are a potential, low-cost resource for expanding the scope of rehabilitation across environments and over extended time periods. We systematically developed and established the effectiveness of an approach to retraining lost sensation and function in the hand that has positive outcomes in relation to the ability to feel everyday textures and objects and use the hand in daily tasks. The purpose of this study was to investigate whether family members, as surrogate therapists, are able to effectively conduct the sensory training program in home environments. Three single-case quasi-experiments were conducted in which stroke survivors' spouses implemented the training program across touch or limb position sensations. We found positive treatment effects in all cases. These findings indicate that selected surrogate therapists (spouses) can successfully implement a program of sensory retraining when provided 2 to 3 hours of training and supervision by a qualified therapist.

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Which carers of family members at the end of life need more support from health services and why?

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005–June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.

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Transitions in men's caring identities: experiences from home-based care to nursing home placement

Objectives.  The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home.

Background.  Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective.

Design.  A qualitative constructivist approach was adopted for this study.

Participants.  Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home.

Methods.  Interviews were analysed with a constructivist approach.

Results.  The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship.

Conclusions.  The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men’s caring activities and to make them sustainable, we believe that men in an informal caring relationship need support.

Relevance to clinical practice.  Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men’s lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers.

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Willingness to use formal long-term care services by Korean elders and their primary caregivers

This study examined predictors of older adults' and primary caregivers' willingness to use formal long-term care (LTC) services to understand possible use patterns of mandatory public LTC insurance programs in Korea. It focused on views regarding who (adult children or the government) should bear the responsibility for older adults' care. Logistic regression models were estimated using data from 1,168 older Korean adults aged 65 or older and their primary caregivers from a national survey. The results showed that older adults' and their caregivers' views on care responsibility were a dominant predictor of their willingness to use both formal home care services and nursing home care services. Both older adults and their family caregivers' willingness to use LTC services should be considered when predicting demand for LTC services. Efforts should promote the perspective that formal LTC services are an acceptable social norm.

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The impact of lung cancer on patients and carers

This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.

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"Isn't he wonderful?" Exploring the contribution and conceptualisation of older husbands as carers

This paper explores the relationship between the dimensions of a debate cited at the intersection of ageing, gender, and family care. It draws together evidence from the General Household Survey for Britain 2000 and social research to explore the contribution and conceptualization of caring by older husbands. UK research on caring reveals that among older spouses, equal numbers of husbands and wives provide intensive care. It has been argued that within late-life marriage an over-riding desire to retain independence erodes gender-determined task allocation, suggesting not only similarity but equality between wives and husbands as carers. More recent qualitative research challenges this assumption and suggests two key findings: that older husbands are motivated to care by a combination of marital duty and reciprocal love, and that they manage the tasks of caring within an instrumental framework. Further, it is clear that pre-existing gender relations continue to be powerful determinants of the experience of caring, and that marital power is retained by men in late-life marriage. Overall, the caring contribution of older husbands is imbued with positive meaning, is highly valued, and offers a distinctive role and identity; this contrasts sharply with the caring experiences of older wives.

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Caring at a distance: learning and practice issues

Emphasis on support for informal carers focuses on those who provide, in the words of the Carers (Recognition and Services) Act 1995, 'substantial' and 'regular' care. Following research and policy, professional education has also developed interest in those who live with the people they support, such as co-resident spouses and children of all ages. This article considers those who probably do not define themselves as carers and are usually referred to as 'relatives' or 'family', living at a distance from an older relative. It explores their possible need for support as well as the form and level of their involvement in relation to care managed services. It describes key areas or events to draw out practice issues and concludes with a discussion of the extent to which care management can work with such relatives. In many ways caring at a distance forces an examination of what is meant by 'care' and who can legitimately claim this as an emotion or status. The rationale for such interest is therefore three-fold. If social workers and social work educators restrict the meaning and their definitions of carers to those who provide 'hands on' services, as part of the care package, they risk alienating relatives from the learning experience of students. In doing so they may neglect these highly valued supports of older people and may leave relatives distressed and disempowered by anxiety over their contract with social work agencies.

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A time-sovereignty approach to understanding carers of cancer patients' experiences and support preferences

Much of the literature on informal carers of cancer patients is quantitative and psycho-oncology based. This literature has established that cancer carers experience higher rates of stress, depression and anxiety than their non-caregiving counterparts, with younger female carers reporting higher rates of burden and unmet needs. The reasons behind this variation and variations in support preferences are poorly understood: some carers prefer support groups and others prefer practical support. This study takes a sociological approach to exploring carers' varied experiences. Longitudinal interviews were conducted with 32 carers of a spouse with cancers of varying stages and diagnoses in the Australian Capital Territory. Analysis, informed by the discretionary time literature, shows time-sovereignty illuminates much of the variation in carers' emotional experiences and support preferences. Carers with few competing commitments and less onerous caregiving responsibilities had time to experience and unpack the range of emotions associated with cancer, and reconnect with their spouse. These carers preferred emotion-focused support. In contrast, carers with multiple commitments had little time to themselves and viewed emotions as an indulgence. These carers preferred practical support. A time-sovereignty framework offers health and support professionals a means of understanding carers' varying needs and tailoring support services.

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Employment status, social ties, and caregivers’ mental health

The purpose of this study of mid-life and older women was to assess the relation between informal care provision and depressive symptoms, taking into account concurrent demands on women's time (including multiple caregiving roles and employment outside the home) as well as participants’ access to potentially supportive social ties.

This cross-sectional study included women ages 46–71, free from major disease, who provided complete health and social information in the 1992 Nurses’ Health Study follow-up survey (n=61,383). In logistic regression models predicting depressive symptoms, we examined the interaction between employment outside the home and informal care provision for a disabled or ill spouse or parent. We also investigated level of social ties, measured with the Berkman–Syme Social Network Index, as a potential modifier of the association between informal care provision and depressive symptoms.

In all analyses, higher weekly time commitment to informal care for a spouse or parent was associated with increased risk of depressive symptoms. This relationship persisted whether women were not employed outside the home, were employed full-time, or were employed part-time. Higher weekly time commitment to informal care provision was associated with increased risk of depressive symptoms whether women were socially integrated or socially isolated. However, both informal care provision and social ties were potent independent correlates of depressive symptoms. Therefore, women who reported high spousal care time commitment and few social ties experienced a dramatic elevation in depressive symptoms, compared to women with no spousal care responsibilities and many social ties (OR for depressive symptoms=11.8; 95% CI 4.8, 28.9). We observed the same pattern among socially isolated women who cared for their parent(s) many hours per week, but the association was not as strong (OR for depressive symptoms=6.5; 95% CI 3.4, 12.7). In this cross-sectional study, employment status did not seem to confer additional mental health risk or benefit to informal caregivers, while access to extensive social ties was associated with more favorable caregiver health outcomes.

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Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge

Background: Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers’ experiences over time.

Objectives: To investigate the experiences of informal carers of stroke survivors over time.

Design: Qualitative study.

Setting: Carers of stroke survivors from one acute and two rehabilitation units in South-West London.

Participants: A purposive sample of 31 informal carers of stroke survivors discharged from inpatient treatment and rehabilitation returning home were interviewed. The majority of participants’ were spouses but they also included adult sons and daughters. Most participants were post-retirement age.

Methods: Audio-taped in-depth interviews of 30–90 min duration were undertaken at three time points—close to discharge, 1 month and 3 months post-discharge. Interviews were transcribed immediately after each interview. Analysis was an ongoing process starting during data collection and ending with themes. As themes emerged they were identified and discussed with other members of the team so that any patterns across the interviews were noted. Themes were followed up at subsequent interviews. This process enabled progressive focusing of ideas and also validated respondents’ accounts.

Results: There were a total of 81 interviews and these carers were similar demographically to other carers in stroke research. A central theme of uncertainty with a number of other interconnected themes were identified. Other themes including adopting routines and strategies, absolute and relative positives and questioning the future could be seen to both influence and be influenced by uncertainty. These themes can all be related to the changes in carers’ lives or the management of uncertainty around stroke. Differences in experiences and coping strategies were identified between new carers and those with prior caring experience.

Conclusions: Carers experience considerable uncertainty when caring for stroke survivors. Living with uncertainty is central to these carers’ experiences and this should be acknowledged by clinicians when supporting stroke survivors and carers. Encouraging the identification of the positive aspects of caring may help carers manage the challenges and uncertainties created by stroke.

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Children's perceptions and experiences of care giving: a focus group study

The stress of care giving for spouses and adult children has been extensively documented in the empirical literature. More recently attention has been paid to children's involvement in family care giving. Qualitative studies in the social welfare field have highlighted the social restrictions caring places upon children. There remains a need, however, to understand what children are thinking and feeling in an effort to cope with their care-giving demands. This study used a focus group methodology and individual interviews to explore the experiences of 17 young carers aged between 10 and 16. Thematic analysis was employed to identify themes relating to the nature of stressors, their appraisal of them, and the coping strategies they use to manage the task of caring.

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Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta- analysis

In the present meta-analysis, we integrated findings from 228 studies on the association of six caregiving-related stressors and caregiving uplifts with burden and depressed mood. Care recipients' behavior problems showed stronger associations with caregiver outcomes than other stressors did. The size of the relationships varied by sample characteristics: Amount of care provided and care receivers' physical impairments were less strongly related to burden and depression for dementia caregivers than for caregivers of nondemented older adults. For spouse caregivers, physical impairments and care recipients' behavior problems had a stronger relationship to burden than for adult children. Furthermore, we found evidence that the association of caregiver burden with the number of caregiving tasks, perceived uplifts of caregiving, and the level of physical impairment of the care receiver were stronger in probability samples than in convenience samples.

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Couples' provision of informal care for parents and parents-in-law : far from sharing equally?

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-in-law. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of non-marital cohabitation in mid-life.

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PL01 The impact of caring for spouses on mental health and health behaviours in over 50s in Ireland, the Irish Longitudinal Study on Ageing

Background An association between informal caring and increased stress, depression and ill-health has been found previously. Limited data are available on the effect of spousal caring on mental health. This study aimed to determine if informal caring for a spouse was associated with depression or health behaviours in adults aged over 50 in Ireland and whether these effects were influenced by the amount of formal care also received.

Methods We analysed two waves (2009–2011, and 2012–2013) of the Irish Longitudinal Study of Ageing (TILDA), a stratified probability sample prospective cohort of men and women aged over 50, resident in Ireland. A total of 5220 respondents, or 2610 couples, who were married/partnered with both spouses in two waves were included. We used multivariate logistic regression models to determine whether caring for a spouse was associated with depression, adjusting for age, socio-economic variables, disability, and cognition of spouse, social support and health-related behaviours in addition to formal care support. Change scores in depression between waves in spousal carers were calculated with the 20-item Centre for Epidemiological Studies Depression (CES-D) scale, and alcohol problems measured using the CAGE alcohol questionnaire. All analyses were conducted in STATA 12.

Results Overall 2.4% (123 of 5051) of married individuals aged over 50 in Ireland began caring for their spouse since surveyed in 2009–2011, and 0.5% (25) cared for their spouse in both surveys. Beginning to care for a spouse was associated with increased depression in the multivariable model (OR 1.05, 95% CI 1.01–1.09) for women, but not in men. Becoming a spousal carer was also associated with negative health behaviours; carers were more likely to be current smokers (OR 2.06, 95% CI 1.17–3.64) and men to have a problem with alcohol (OR 7.78, 95% CI 3.52–17.2), compared to non-carers. The negative effect of caring on mental health was attenuated by receiving respite care, home help and personal care attendants.

Conclusion Becoming a spousal carer was associated with increased depression in this longitudinal study but this effect was reduced by access to formal care. The impact of caring on depression and behavioural health was differentially moderated by gender, with women having increased depression, and men more likely to have problematic drinking. Further research is needed to clarify mechanisms of resilience and support to increase social inclusion of informal carers and enhance home support through formal care mechanisms to reduce the detrimental health-related risks of care-giving.

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The caregiving role following percutaneous coronary intervention

Aim.  The aim of this study is to describe the experience of caregivers of individuals who have had a percutaneous coronary intervention (PCI).

Background.  Decreased lengths of hospital stay and an increased emphasis on chronic disease self-management increase the importance of carers in assisting in recovery and lifestyle modification.

Design.  Cross-sectional dual-moderated focus group design.

Method.  Three focus groups using a dual facilitation approach were held in the cardiac rehabilitation setting of a tertiary referral hospital in metropolitan Sydney. All sessions were audio recorded, transcribed and thematically analysed.

Results.  Four themes emerged from the data: (1) a gendered approach to health, illness and caring; (2) shock, disbelief and the process of adjustment following PCI; (3) challenges and changes of the carer–patient relationship and (4) the needs of the carer for support and information. Issues emerging from this study parallel other findings describing the experience, yet provide new insights into the issues surrounding PCI.

Conclusion.  These findings highlight the need for including carers in care planning and decision-making and providing them with support and resources.

Relevance to clinical practice.   

  • Emphasises the importance of preparing carers of the likely experience following a PCI.
  • Demonstrates the degree to which vigilance, deferment of carer-health needs and role conflict impact on the carer’s personal relationship.
  • Demonstrates the need for formal support interventions for carers of patients who have had PCI.
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Psychological well-being of spouses of stroke patients during the first year after stroke

OBJECTIVE: To investigate whether spouses' psychological well-being changed between the first weeks after their partner's stroke and four months and one year later, and to study the relationship between spouses' psychological well-being and objective characteristics of the stroke patients.

DESIGN: Prospective, longitudinal study.

SETTING: Hospital care and follow-ups.

SUBJECTS: Sixty-seven consecutively enrolled spouses to first-ever stroke patients < 75 years.

MAIN MEASURES: The Psychological General Well-Being (PGWB) Index. Clinical examination of the stroke patients. The Barthel Index.

RESULTS: The spouses' psychological well-being was significantly lower in the first weeks after their partner's stroke as compared with norms. At four months, it had increased significantly. Between four months and one year, individual changes were observed in both positive and negative directions; thus, the mean level of the group remained constant. The spouses' psychological well-being in the first weeks was significantly related to the patients' sensorimotor impairments, while it was related at four months to cognitive impairment and the patients' abilities in self-care. At one year, psychological well-being was related to remaining sensorimotor and cognitive impairments. A significant relationship was also seen between the spouses' and the stroke patients' emotional health.

CONCLUSIONS: The spouses' psychological well-being increased after the first chaotic weeks. The presence of visible impairments initially seemed to affect spouses' emotional health, while cognitive and emotional impairments became more evident in everyday life. In the long term, however, the spouses' individual life situations and coping abilities seem to be of relatively increasing importance for their continued well-being.

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Burden among partner caregivers of patients diagnosed with localized prostate cancer within 1 year after diagnosis: an economic perspective

Purpose: Informal care plays an important role in the overall care for people with cancer. This study estimates lost productivity and informal caregiving and associated costs among partner caregivers of localized prostate cancer patients within 1 year after diagnosis.

Methods: We applied data from the Family and Cancer Therapy Selection study, a three-wave self-administered survey among patients diagnosed with localized prostate cancer and their partner caregivers in multiple clinics in the USA. Time spent was measured by the sum of working hours lost, informal caregiving hours performed, and hours spent on household chores. The national median income for women 55 years or older was used to calculate costs associated with the time spent using the opportunity cost method. Descriptive and bivariate analyses were conducted.

Results: The average working hours decreased from 14.0 h/week (SD = 17.6) to 10.9 h/week (SD = 15.9), without a significant change in responsibility/intensity at work. The mean annual time spent on informal caregiving and household chores was 65.9 h/year (SD = 172.4) and 76.2 h/year (SD = 193.3), respectively. The mean annual economic burden among partner caregivers was US$6,063 (range US$571–US$47,105) in 2009 dollars accounted for by a mean of 276.2 h (range 26–2,146) in the study sample. The time spent on informal caregiving and household chores varied by patient and caregiver characteristics.

 Conclusions: Pilot estimates on non-medical economic burden among partner caregivers (spouses) during the initial phase of the treatment provide important information for comprehensive estimation of disease burden and can be used in cost-effectiveness analyses of prostate cancer interventions.

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Caregivers' anxiety and self-efficacy in palliative care

This study examined the relationship between caregivers' anxiety supporting a patient with advanced cancer and self-efficacy and their socio-demographic characteristics, and then whether these variables could influence their self-efficacy. One hundred and seven caregivers of advanced cancer patients participated in the study and completed the Greek versions of the State–Trait Anxiety Inventory (STAI) and the General Perceived Self-efficacy Scale (GSE). Significant comparisons were found between State anxiety and female gender (P= 0.009), cohabitation (P= 0.002) and relationship with the patient (P= 0.004); statistically significant associations were found between State, Trait anxiety and self-efficacy scores of caregivers (P < 0.0005 respectively). A multiple regression model (enter method) showed women (P= 0.005), spouses (P= 0.01) and self-efficacy (P= 0.02) as the significant predictors of State anxiety. Furthermore, self-efficacy seemed to be the strongest contributor of trait anxiety (P < 0.0005). Female caregivers and spouses of advanced cancer patients experience more state anxiety levels than men and other caregivers respectively. In addition, caregivers with low self-efficacy are more likely to have elevated anxiety scores than self-efficacious caregivers. These findings can help healthcare professionals focus on some problems common to caregivers of cancer patients and plan appropriate interventions.

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Informal Caregivers and the Risk of Nursing Home Admission Among Individuals Enrolled in the Program of All-Inclusive Care for the Elderly

PURPOSE: We sought to determine whether participants in the Program of All-Inclusive Care for the Elderly (PACE) with an informal caregiver have a higher or lower risk of nursing home admission than those without caregivers.

DESIGN AND METHODS: We performed a secondary data analysis of 3,189 participants aged 55 years or older who were enrolled in 11 PACE programs during the period from June 1, 1990 through June 30, 1998. Cox proportional hazard models determined whether having any caregiver, as well as specific caregiver characteristics, such as either living separately from the enrollee, being over the age of 75 years, providing personal care, not reducing or quitting work to provide care, or not being a spouse, predicted time to nursing home admission.

RESULTS: Fewer than half of the participants (49.4%) lived with a caregiver, and 12.4% had no caregiver. Individuals who lived with their caregiver were frailer than either those who lived separately or those without a caregiver. We measured frailty in terms of functional and cognitive status, incontinence, and multiple behavioral disturbances. The presence of a caregiver did not change the risk for institutionalization. None of the caregiver characteristics were associated with a higher risk of nursing home admission.

IMPLICATIONS: Unlike individuals in the general population, participants in PACE who lack an informal caregiver are not at higher risk of institutionalization. Further research is required to ascertain whether PACE's comprehensive formal services compensate for the lack of informal caregiving in limiting the risk for institutionalization.

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Negative/positive home-based caregiving appraisals by informal carers of the elderly in Japan

This study aimed to determine factors associated with negative/positive home-based caregiving appraisals by informal carers of older people in Japan to consider which family carers’ community health nurses should focus on.

Because of the increasing older population in Japan, those needing a high level of care have become more dependent on informal carers. Carers’ health is an important aspect of caregiving. Community health nurses play an important role in assessing carers’ health, and carer appraisals, that is, how carers perceive their caregiving work, may help them better understand the health state of carers.

This quantitative study examined 192 primary carers of the elderly (care level >3) who used home-visiting nursing services in both rural and urban Japanese communities. The Japanese version of the Zarit scale (22 items) was used for negative appraisal and a positive caregiving appraisal scale (14 items) for positive appraisal. Participants with above-median scores (care burden, 30.0; positive caregiving appraisal, 39.0) were categorized as having a high care burden and high positive appraisal. To determine factors associated with appraisals, multinomial regression analysis was performed. Negative/positive appraisals were separately set as a dependent variable, and 17 items relating to carer characteristics, care-recipient characteristics, and external variables were set as independent variables. This was followed by stepwise regression and backward elimination.

With respect to care burden, positively associated factors were sekentei or social pressure [odds ratio (OR) 4.25, 95% confidence interval (CI) 1.39–13.04], caregiving obligation (OR 3.11, 95% CI 1.43–6.77), spouse carer (OR 2.58, 95% CI 1.05–6.35), daughter-in-law carer (OR 3.68, 95% CI 1.31–10.34), and depression (OR 50.58, 95% CI 13.85–184.67). With respect to positive appraisal, negatively associated factors were caregiving obligation (OR 0.29, 95% CI 0.15–0.53), male carer (OR 0.44, 95% CI 0.21–0.92), and daughter-in-law carer (OR 0.29, 95% CI 0.12–0.74).

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The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed. A combination of descriptive statistics and qualitative analysis of these data revealed that social and cultural factors formed the basis of patients’ and informal carers’perceptions of cardiovascular risks and social information networks provided the main source of informationabout cardiovascular risk. For the staff, known risk factors based on epidemiological evidence (lack of exercise and diet) formed the basis of their perceptions of the patients’ cardiovascular risk factors. However, for all the participant groups (i.e. patients, informal carers and staff) the risk factors – diet and exercise were indicated as being the patients’ intended lifestyle changes., The results illustrate potential interplay between ‘social’ and ‘cultural’ context and perceptions of cardiovascular risk and incongruency between perceptions of risk and perceptions of the patients’ intended lifestyle change. These results may assist nurses in giving effective advice to patients and relatives about lifestyle change following myocardial infarction and inform future policy for cardiac rehabilitation.

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Exploring identity in the 'figured worlds' of cancer care-giving and marriage in Australia

Following changes in the structure and funding of the Australian medical system, patients have become consumers' or clients'. Family and friends have become carers' or caregivers', signifying their increased responsibilities as patients move from hospitals to communities. While policy makers embrace the term carer', some argue that the title is not widely recognised and has disempowering connotations. This paper examines spouses' reflections on the term carer' based on qualitative interviews with 32 Australians caring for a spouse with cancer from a study conducted between 2006 and 2009. Recruitment involved survey and snowball sampling. Following a grounded theory approach, data collection and analysis were performed simultaneously. Using Holland and colleagues' sociocultural identity as practice' theory and a thematic approach to analysis, findings depict identification with the spouse' and carer' label as relationally situated and dependent on meaningful interaction. Although others argue that the term ‘carer’ is a ‘failure’, these findings depict identification with the label as contextual, positional and enacted, not fixed. Furthermore, and of most significance to practitioners and policy makers, the title has value, providing carers with an opportunity to position themselves as entitled to inclusion and support, and providing health professionals with a potential indicator of a spouse's increased burden.

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Social participation of relatives post-stroke: the role of rehabilitation and related ethical issues

PURPOSE: (1) Describe the challenges facing relatives of persons with stroke in accomplishing their daily activities and social roles (participation). (2) Reflect on the role of rehabilitation for relatives and ethical issues that may emerge following the adoption of a family-centred approach.

METHOD: Review of the scientific literature in Medline (1996 to July 2009), Embase (1996 to July 2009) databases using keywords: stroke AND participation AND family OR spouse OR caregivers AND ethics AND burden. Selection criteria were as follows: study must examine the participation of relatives post-stroke (or equivalent concept such as burden), rehabilitation interventions for relatives post-stroke or ethical issues related to being a relative of a person with stroke. Articles not written in English or French were excluded.

RESULTS: The sample comprised 17 scientific articles. According to five studies, social participation of relatives is characterised by increased responsibilities and a reduction in interpersonal relationships and leisure. In rehabilitation, there is no consensus regarding what should be done for relatives; guidelines exist but are not applied in practice. Little has been formally reported regarding ethical issues likely to emerge for relatives.

CONCLUSIONS: The main impact of stroke is on social roles of relatives such as responsibilities, interpersonal relationships and leisure. The role of rehabilitation and related ethical issues needs further examination.

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Relying on informal care in the new century? Informal care for elderly people in England to 2031

The research reported here is concerned with the future of informal care over the next thirty years and the effect of changes in informal care on demand for formal services. The research draws on a PSSRU computer simulation model which has produced projections to 2031 for long-term care for England. The latest Government Actuary's Department (GAD) 1996-based marital status projections are used here. These projections yield unexpected results in that they indicate that more elderly people are likely to receive informal care than previously projected. The underlying reason is that the GAD figures project a fall in the number of widows and rise in the number of elderly women with partners. What this implies is that ‘spouse carers’ are likely to become increasingly important. This raises issues about the need for support by carers since spouse carers tend to be themselves elderly and are often in poor health. The article explores a number of ‘scenarios’ around informal care, including scenarios in which the supply of informal care is severely restricted and a scenario in which more support is given to carers by developing ‘carer-blind’ services. This last scenario has had particular relevance for the Royal Commission on Long Term Care.

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Social participation and family carers of people living with dementia in Australia

This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as ‘Tell me about what social participation means to you’, and ‘How did this change…’. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged.

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The quality of life of carers of patients with severe lung disease

Severe lung disease is known to affect the lives of not only the sufferer but also his/her family. This qualitative phenomenological study identified seven patients with severe lung disease and studied the quality of life of their carers (five female, two male) who were not fully employed, living in the same house or nearby. In a semistructured interview, the carers were asked about looking after their spouse or relative, whether they had support and the effect of caring on their health and finances. The findings showed the carers' lives to be severely restricted, all carrying a heavy emotional burden of frustration, depression and isolation: part-time jobs were important both financially and to reduce isolation. Family support was vital to their coping, but few had received professional help. All were affected by reduction in income, but claiming allowances was confusing; unpredictability of the disease complicated much-needed recreation and holidays. Findings were similar to previously published data.

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The effect of change in mental disorder status on change in spousal mental health: the HUNT study

Longitudinal research on caregiver burden related to mental disorders based on representative samples is scarce. Previous results on the development of burden over time are inconsistent. This article aims to establish whether change in mental disorder status in the index persons predicts subjective burden in their spouses in terms of changed mental health over a period of 11 years. The authors compared change in spousal mental health between four groups from a Norwegian population based sample of 9,144 couples, in which the index persons suffered from mental disorder at the first, second, both, or none of the two measurement times. Mental disorder was defined by a high score on a measure of global mental health combined with self reported impaired functioning due to mental health problems. Spouses of index persons who suffered from mental disorder at the second but not the first measurement time reported moderately impaired mental health, but those spouses with few friends reported a more severe impairment. Spousal mental health in the other groups did not change significantly. Effect sizes were moderate. The findings suggest that spouses of mentally disordered individuals in general experience only moderate levels of burden, and that the transition into a caregiving role is the period in which spouses are vulnerable to negative effects on their mental health. The results point to the treatment of mental health problems in couples as a supplement or alternative to individual treatment.

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Factors related to perceived quality of life in patients with Alzheimer's disease: the patient's perception compared with that of caregivers

This study aimed to compare care recipient and caregiver perceptions of quality of life in patients (QoL-p) with Alzheimer's disease (AD) and to identify associated factors, and the concordances-discrepancies. A cross-sectional analytic study of 236 patients and their carers was carried out using the Quality of Life in Alzheimer's Disease (QoL-AD) scale, socio-demographic data and clinical examination. Patients scored the QoL-AD more favourably than did caregivers. Cognitive deterioration did not affect the perception of QoL-AD. The neuropsychiatric symptoms was associated with a negative perception of the QOL-AD in both patients and caregivers. Greater functional autonomy was associated with a better perception of the QOL-AD in patients and even more so in caregivers. In carers, burden and mental health were inversely associated with the QoL-AD. QoL-AD scores of both patients and caregivers were higher for men, married subjects, those who lived with their spouse and those living in their own home. When the carer was a spouse both patients and caregivers scored the QoL-AD higher than when the carer was a son or daughter (35.5 vs 33.4 and 33.7; 32.9 vs 30.5 and 27.7, p < 0.001). Conclusions: Patients have a better perception of QoL-p. Caregivers give a more negative evaluation of neuropsychiatric symptoms, but have a more positive view of functional autonomy. Carers who are spouses have a better perception of QoL-p than do carers who are sons or daughters. Copyright © 2008 John Wiley & Sons, Ltd.

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The case for involving adult children outside of the household in the self-management support of older adults with chronic illness

Objectives: This study sought to (1) identify barriers to spousal support for chronic illness self-care among community-dwelling older adults; and (2) describe the potential availability of self-care support from adult children living outside of the household.

Methods: Nationally representative US sample of chronically ill adults aged 51þ were interviewed as part of the Health and Retirement Study (N=14,862). Both participants and their spouses (when available) reported information about their health and functioning. Participants also reported information about their contact with adult children and the quality of those relationships.

Results: More than one-third (38%) of chronically ill older adults in the US are unmarried; and when spouses are available, the majority of them have multiple chronic diseases and functional limitations. However, the vast majority of chronically ill older adults (93%, representing roughly 60 million Americans) have adult children, with half having children living over 10 miles away. Most respondents with children (78%) reported at least weekly telephone contact and that these relationships were positive. Roughly 19 million older chronically ill Americans have adult children living at a distance but none nearby; these children are in frequent telephone contact and respondents (including those with multiple chronic diseases) report that the relationships are positive.

Discussion: As the gap between available health services for disease management and the need among community-dwelling patients continues to grow, adult children—including those living at a distance—represent an important resource for improving self-care support for people with chronic diseases.

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Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only.

Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature.

Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke.

Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.

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Family caregivers of the elderly: quality of life and coping in Estonia

The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.

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The complex nature of informal care in home-based heart failure management

Aim. This paper is a report of a study to examine the complexities of informal caregiving for people with chronic heart failure. Background. Little is known of the activities involved and underlying informal care. Heart failure is a common and burdensome condition in which carers play an important management role. Method. Semi-structured interviews were carried out with 30 informal carers nominated by patients with mild-to-moderate heart failure (24 spouses, four children, one sibling and one neighbour). Interviews examined knowledge of heart failure, its effects, reported management practices and concerns, decision making and support. The data were collected in 2001. Findings. The management of heart failure was a shared and ongoing responsibility between the carer and patient. Carers’ clinical knowledge of the condition and management was often limited, but they developed extensive knowledge of its personal effects on the patient. Invisible care activities included monitoring signs of symptom exacerbation and energy boundaries against perceived current and future demands and priorities. Visible care activities included medication management, dressing, bathing and help-seeking. Carers responded to patients’ capacities, and adopted philosophies that sought to foster independence while facilitating as normal a life for the patient as was possible and safe. Conclusion.  Interventions for informal carers around effective chronic heart failure management should address both visible and invisible informal caring. Future research is needed to develop interventions with carers to improve quality of care, reduce costs and improve patient quality of life. More research is needed to explore the complexities of lay caregiving and to explore the invisible dimensions of informal care further.

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Health status and work burden of Alzheimer patients' informal caregivers : comparisons of five different care programs in the European Union

BACKGROUND: In 1998, a research study was conducted to compare existing programs in the European Union providing both care to people with senile dementia of the Alzheimer type, and support to their informal caregiver. METHOD: Five programs were selected in seven centres. Home social services (Denmark), Day centres (Germany), Expert Centres (Belgium, Spain), Group Living/Cantou (Sweden, France), Respite hospitalization (France). In each centre, 50 patients were randomly selected. The questionnaire addressed informal caregivers (or referents). It included the Nottingham Health Profile (NHP), the Zarit Scale, and it collected data on age, sex and position (spouse or child) of the informal caregiver, as well as age, level of mental deterioration and disabilities of the patient. RESULTS: (n=322 subjects) Comparatively with caregivers of Respite hospitalization patients chosen as the reference, caregivers of patients cared by Group living/Cantou and Home social services experienced a significantly lower burden. The benefit from the Expert centre program concerned emotional reactions (depression) (odds ratio=0.32; P=0.02) and work burden (Zarit) (OR=0.32; P=0.04). The main benefit for caregivers who received Day centre help was the important reduction of feelings of social isolation (OR=0.13; P=0.0003). CONCLUSIONS: The Group Living/Cantou program appeared as the most efficient way to reduce informal caregiver burden, independently from the country considered.

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Who should make the decision on the use of GPS for people with dementia?

Objectives: In recent years advanced technologies, such as Global Positioning Systems (GPS), allow for tracking of human spatial activity and provide the ability to intervene to manage that activity. The purpose of this study is to examine the issue of who should decide about the use of electronic tracking using GPS for people with dementia.

Methods: Based on quantitative data collected from 296 participants comprising cognitively intact elderly, family caregivers of people with dementia, social workers, other professionals, and social work students, study participants were asked to rate nine different potential decision-makers to make this decision.

Results: The results show that figures inside the family, particularly the spouse or the most involved family caregiver, were perceived more important in the decision-making process than figures outside the family, whereas the person with dementia was ranked third in the order of the figures. Since the decision to use GPS for tracking raises the ethical dilemma of personal safety versus autonomy and privacy of people with dementia, the findings seem to indicate that the reluctance of professional caregivers to assist family caregivers to make this decision is experienced as frustrating.

Conclusions: The findings imply that in order to reach a balance between the wishes and interests of both people with dementia and their family caregivers, there is a need for more active involvement of the professional caregivers to facilitate the family decision-making process.

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What does phenomenology offer to the study of care-giving?

Care giving to a dementia sufferer is complex (Parsons, 1997) and inherently stressful (Baldwin et al 1989). It is suggested that the predominance of the care-giver stressor-burden research paradigm during the last 30 years has frequently been uni-dimensional, objectively oriented, generally equivocal, and unconvincing in its findings. Dillehay and Sandys (1990), suggest that preoccupation with such typically narrow approaches has delayed the much-needed development of a more accurate understanding of the lived experience (the phenomenology of care-giving). Researching the experience of care giving to a dementing relative requires a research strategy, which acknowledges the intricacies, complexities, subjectivity and humanness of that experience. That is the premise behind this paper. A multi-dimensional phenomenological PhD study is presented. The focus is on understanding care giving from the individual and collective perspectives of 46 spouse caregivers. The methodological implications (including influences of Husserl and Heidegger) are outlined before the phenomenological research findings are presented and discussed. Ethical approval was given by the Bassetlaw Hospital and Community NHS Trust Ethics Committee (now part of the Nottinghamshire Healthcare NHS Trust).

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Needs, barriers and facilitators experienced by spouses of people with aphasia

Purpose. Little is known about how spouses cope with their needs as a result of their partner's aphasia. This study described spouses' needs and identified the barriers and facilitators to satisfying them.

Methods. Four associations of people with aphasia were approached. Eleven spouses were interviewed in small groups. They described the results of their inquiries and efforts to satisfy their needs because their partner had aphasia (mean time since onset 6 years 8 months) as a result of stroke or surgery. Discussions were transcribed and coded. Excerpts were grouped into categories.

Results. Spouses mainly needed support and respite, and perceived their partner to need help for communication and well-being. Personal factors like the availability of close others to provide help were facilitating. However, participants encountered barriers, mainly organisational, i.e. the help needed did not exist. Some needs persisted over time.

Conclusions. Results confirm the long-term needs of spouses in adjusting to the aphasia of their partner, as well as the limited services available to them. Many of the needs reflected spouses' concerns about their partner, while others were a consequence of their caregiving role as well as the unavailability of support. Spouses of people with aphasia should have access to support during and after rehabilitation.

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Understanding the needs of the family carers of people with dementia

As more people are living longer this growing number of older people means an increase in mental health problems. Twenty-five per cent of people over 85 develop dementia and between ten and sixteen per cent of those over 65 develop clinical depression. In addition, people who developed severe and enduring mental health problems such as schizophrenia when young are now growing older (Audit Commission, 2000). Most people with dementia live in the community. About half are cared for at home by a family carer, usually a spouse or adult child (Keady & Nolan, 1995). The average age of carers is between 60 and 65 years and many are much older (Levin, 1997). Carers of people with dementia are likely to have higher than normal levels of stress and burden and report higher levels of depression (Pearson et al, 1993; Russo et al, 1995). 34 refs. [Introduction]

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Informal carers of older family members: how they manage and what support they receive from respite care

Aims.  To describe informal carers’ coping strategies and their experiences of the support provided by respite care.

Background.  The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution.

Design.  Survey.  Methods.  The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index (Nolan et al. 1995) and an index developed by the researchers.

Results.  Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship.

Conclusions.  The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role.

Relevance to clinical practice.  Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well-being of the entire family.

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Alzheimer's disease and the psychosocial burden for caregivers

The majority of patients with Alzheimer's disease are cared for by their families at home. Caring for someone with Alzheimer's disease is commonly portrayed in terms of 'problematic' behaviour. This study explored the level of understanding carers have of the illness and the psychosocial impacts carers experience. Qualitative interviews were conducted with eight carers who had been looking after their relatives in community settings. Findings suggest that the carers in this study have a distinct lack of knowledge regarding Alzheimer's disease and its management. A number of psychosocial consequences of caring were identified, including: isolation; feelings of guilt; uncertainty regarding lack of knowledge; and loneliness. Carers failed to utilise available services appropriately, and thus gained little benefit from their presence. Carers perceived their experiences as 'problematic' and they suffered negative psychosocial effects due to their caring experiences. The findings suggest that carers require more information and explanation of their experiences. This would help them in their ability to cope with their spouses.

Continuity and loss: the carer's journey through dementia

This paper looks at the ambiguous journey travelled by family, mainly spouse, carers in Scotland is based on 37 interviews which formed part of a larger study exploring the subjective experience of 20 individuals with dementia. The majority of the interviews were conducted with the carer alone, others with the relative with dementia (RWD) present and some as joint interviews. The carers are found to be recognizing many manifestations of loss in the loved one and, simultaneously in their carer role, striving to maintain continuity of that person through compensatory actions and the provision of a supportive care environment. These experiences are located along a trajectory of continuity and loss. This article provides further insight into the caregiving relationship in dementia and the complexities of maintaining that relationship in the shifting ground of a progressive illness.

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Quality of life in a heterogeneous sample of caregivers of cancer patients: an in-depth interview study

To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.

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REMCARE: reminiscence groups for people with dementia and their family caregivers - effectiveness and cost-effectiveness pragmatic multicentre randomised trial

Objectives: The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care.

Design: A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point).

Setting: Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings.

Participants: A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study.

Interventions: The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group.

Main outcome measures: The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties.

Results: The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed.

Conclusions: This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.

Current Controlled Trials ISRCTN42430123.

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Caregiving in the Pacific Rim: a comparison of Asian and non-Asian caregiving experiences

This study compares the results of two surveys of informal caregivers conducted in California and Hawaii (N = 1677) to determine if there is a uniquely Asian model of caregiving. Differences between Asian and non-Asian caregivers were found in the percentage of male caregivers, the impact of caregiving personally and on the family, and on employment. Furthermore, in multivariate analysis, being of Asian origin retained significance in predicting both positive and negative caregiver outcomes. This study suggests that Asian-american caregivers, while still respecting their cultural caregiving tradition, may be experiencing difficulties in adapting to new roles.

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Psychosocial interventions for carers of survivors of stroke: A systematic review of interventions based on psychological principles and theoretical frameworks

Purpose. Most stroke survivors are cared for at home by informal carers, usually their partners or children. The chronic burden of meeting these care needs can have a significant impact on the psychological well-being of the carer. The aim of this review is to analyse interventions that target psychosocial functioning in carers of stroke survivors to understand how such interventions can reduce the burden of caring. Method. Seven studies that reported on randomized controlled trials of psychosocial interventions for informal adult carers of a survivor of stroke, which reported validated measures of psychological health outcome and met a satisfactory rating of quality were included in this systematic review. Results. A forest plot of two studies that used education and counselling as the intervention for patients and spouses indicate a more favourable outcome for the intervention on the global family functioning scale. The Clarke, Rubenach, and Winsor (2003) study showed that patients were more likely to benefit from an intervention consisting of counselling and education than spouses.

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Caregivers' active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study

Background: Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.

Methods: The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.

Results: Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).

Conclusion: The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.

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Examining the role of subjective and objective burden in carer health-related quality of life: the case of colorectal cancer

Purpose: Our aim was to investigate associations between the subjective burden of care and health-related quality of life (both physical and mental) within colorectal cancer patient carers in Ireland, with supplementary analysis of carer objective factors.

Methods: Two hundred twenty-eight colorectal cancer informal carers were sent a postal questionnaire between August 2010 and March 2011 which included the Caregiver Reaction Assessment (CRA) and the SF-12v2. Multiple regression analysis assessed whether five CRA domains (family support, finances, schedule, health and esteem) predicted carer mental or physical health. Between-group comparisons investigated differences in these domains across objective factors.

Results: One hundred fifty-three carers (82 % female) completed the questionnaire (response rate = 68 %). Carers’ mean physical component summary (PCS) was 48.56 (SD = 10.38) and mean mental component summary (MCS) was 49.22 (SD = 9.7). Five CRA factors explained 30 % of variance in the PCS score and 28 % of variance in the MCS score. Health burden (β = −.76, p < .001) and schedule burden (β = .28, p = .01) were significant predictors of PCS. MCS was significantly predicated by financial burden (β = −.24, p = .01) and esteem (β = −.18, p = .03). Younger carers, spouses, those with a comorbid condition and those with no income change had significantly lower PCS. There were no statistically significant group differences for carer mental health.

Conclusions: Our results demonstrate the need to recognise the distinctive aspects of the impact of caring (i.e., physical and mental) on carers and that different domains of subjective carer burden and objective factors impact differently on each of these. This has important implications for those delivering support to carers over the course of the survivorship continuum.

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Caring for a relative with dementia: the perceptions of carers and CPNs

Older people with dementia living in the community are most likely to be cared for by other older people, predominantly spouses, who will be at increased risk of stress‐related health problems themselves. Appropriate support of such carers is crucial if carer breakdown and consequent care‐receiver admission to residential homes is to be avoided. This paper examines the experience of older carers of frail older people with dementia and examines the kind of support that is provided to such carers. In practice, the sole source of professional support received by older people in this study was from community psychiatric nurses (CPNs). CPNs' role did not comprise hands‐on care‐giving and family carers carried out most personal/physical and healthcare tasks themselves, aided in some cases by care workers. The paper concludes by suggesting that lack of support for carers in these activities requires redress.

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Leisure satisfaction and psychiatric morbidity among informal carers of people with spinal cord injury

Study design: Cross sectional survey. Objective: To examine the nature and prevalence of common mental disorders among informal carers of people with Spinal Cord Injury (SCI) and the association with their leisure satisfaction. Setting: Christian Medical College, Vellore, Tamilnadu, India.

Methods: A cross-sectional survey of informal carers of people SCI at the Department of Physical Medicine and Rehabilitation. Fifty-three informal carers of people with SCI were interviewed using the Revised Clinical Interview Schedule to assess psychiatric morbidity, and using the Leisure Satisfaction Scale to measure leisure and contentment. Data on carers with psychiatric morbidity were compared to those without common mental disorders using univariate and multivariate statistics.

Results: Study reported a high morbidity (53%), with most consistent diagnoses of depression and anxiety. Carers who were spouses, women, currently married and those with lower education had greater psychiatric morbidity and lesser leisure satisfaction, even after adjusting for age and education using logistic/linear regression. Age, occupation, residence, socioeconomic status, type and duration of SCI were not associated with either morbidity or leisure satisfaction.

Conclusion: Many carers of people with SCI suffer from psychiatric morbidity and also have low scores on leisure satisfaction.

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Narrative research methods in palliative care contexts: Two case studies

Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed, The authors' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals 'perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management.

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Correlates of care relationship mutuality among carers of people with Alzheimer's and Parkinson's disease

Aim.  This paper presents findings from secondary analysis of longitudinal data on correlates of care relationship mutuality collected from 91 carers of people with Alzheimer’s disease and Parkinson’s disease in the control group of a randomized trial of home-care skill training.

Background.  Many family members and other informal carers are reported to suffer multiple adverse social, financial, psychological and physical caregiving outcomes. High levels of mutuality, the perception that the quality of the care relationship is positive, reportedly ameliorate these negative outcomes.

Method.  Multilevel models for change were used to explore whether care recipient functional ability, carer gender, depressive symptoms, kin relation to care recipient (spouse, non-spouse) and years of caregiving experience were related to carers’ perceptions of care relationship mutuality over a 12-month period. Data collection took place between 2003 and 2008.

Results.  Carers who reported lower mutuality: (1) were caring for care recipients with lower functional ability, (2) had less caregiving experience and (3) had more depressive symptoms.

Conclusion.  Informal carers who perceive little mutuality in their relationship with the care recipient may be more likely to terminate care early. Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in carer and care recipient outcomes. Home-care skill training may need to include relationship-building skills to offset adverse carer outcomes.

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The impact of stroke on the well-being of the patient's spouse: an exploratory study

Aims.  The aim of this study was to investigate the impact of stroke on the patient's spouse, paying particular attention to psychiatric morbidity and the strain of caring, and correlating these with the degree of disability of the patient. The impact of impairment of speech was also investigated.

Background.  The impact of a stroke is not limited to the person who suffers it but also to the family, with the patient's spouse being particularly vulnerable. The literature suggests that the consequences for the spouse can be physical, psychological, economic and social.

Methods.  A quantitative approach was employed to investigate 44 couples who volunteered to participate in the study. A small battery of validated instruments was used to describe the patient's degree of disability, and psychiatric morbidity and the strain of caregiving in the spouse. Pearson's Correlation and Mann–Whitney U-test were used in data analysis.

Results.  The spouses were found to have a greater degree of psychiatric morbidity than a reference group and a large proportion of them found caregiving to be stressful. Psychiatric morbidity and strain in the spouses were not directly proportional to the extent of the patient's disability. Spouses whose partners’ speech was affected by the stroke were more likely to experience strain than those who were unaffected in this way.

Conclusions.  This study contributes to our knowledge of the relationship between patients’ physical disability and the level of strain and psychiatric morbidity in spouses. The relationship is a complex one, in which it is not possible to predict with confidence which spouses will be most vulnerable.

Relevance to clinical practice.  Caring for a patient following a stroke is very stressful, particularly in cases where the patient's speech is affected and there is also likely to be a significant effect on the psychological well-being of the spouse. This information is relevant to all nurses caring for patients with stroke and the patients’ spouses.

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Committed to caring: carer experiences after a relative goes into nursing or residential care

This article presents the key findings from a collaborative study about the experiences and support needs of carers whose relatives are admitted into a nursing or residential care home. Drawing upon data from carers' qualitative accounts, it considers carers' post‐admission roles, responsibilities and profiles, and the contribution carers make to the continued care of their relative. Carers' post‐admission caring experiences are described in detail and differences between spouse carers and carers involved in looking after a parent are identified. A temporal model depicting the complex and dynamic nature of carers' postadmission experiences is presented. The implications for policy and practice are discussed.

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Who cares? Moral obligations in formal and informal care provision in the light of ICT-based home care

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. 

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Mutual care between older spouses with physical disabilities

This article explores mutual caregiving between older spouses aging with physical disabilities. Nine older couples, where both partners had lived long lives with physical disabilities, were interviewed as dyads about mutual caregiving. The couples not only had access to different kinds and degrees of formal support but also provided mutual care to each other in a variety of ways. Interview coding using grounded theory led to two overarching categories from which motivation for mutual caregiving could be understood. These categories were Mutual care as freedom and Mutual care as imperative. The results extend understanding about how older couples with disabilities attached meaning to their mutual caregiving, and why mutual care was sometimes preferable, despite the availability of other sources of help and despite practical difficulties of providing this help. These findings suggest that health care professionals need to be sensitive to the dynamics of the couple relationship and carefully explore the couple’s preferences for how formal support can best be provided in ways that honor and sustain the integrity of the couple relationship.

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Help from spouse and from children among older people with functional limitations : comparison of England and Finland

Future increases in need of old-age care warrant research on receipt of informal care among older people in different policy and cultural contexts. Separating informal care into help provided by spouse and by children may shed more light on dynamics of informal help, important in alleviating the demands on the formal sector. Using nationally representative data from England and Finland, we performed logistic regression analyses to study receipt of help from spouse and children among community-dwelling persons aged 70+ years with functional limitations. In both countries, women and those with more functional limitations had higher odds of receiving spousal and filial help. In England – but not in Finland – those receiving formal public help had lower odds of receiving spousal help than those with no formal help. Those with low education received more filial help in England, but no association was found between formal and filial help. In Finland, the effect of education was not significant but those receiving formal help had higher odds of also receiving filial help. The results suggest that in a liberal market-led state, the role of children may be to help their parents living alone and with low financial resources. In the context of a generous welfare state, children may function more as active agents bridging the gap between their parents and formal services.

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Predictors of quality of life among spouses of stroke patients during the first year after the stroke event

BACKGROUND: Stroke, a disease with severe consequences for patients and their families, often lead to psychosocial stress, and a decline in the quality of life (QoL) among carers. Predicting the QoL is essential in the development of effective nursing support interventions.

AIM: The aim of the present study was to identify predicting factors for the general QoL among spouses of stroke patients, and to determine whether these predictors change during the first year after the patient's stroke event.

DESIGN: One hundred spouses were followed three times during 1 year regarding QoL, own illness, economic situation, well being, life situation, sense of coherence, social network and the patients' ability in activities of daily living (ADL). Stepwise multiple linear regression analyses were conducted for the baseline, 6- and 12-month assessments respectively, with the present QoL as the dependent variable.

RESULTS: Over time during the first year after the patients' stroke event, there were significant differences in the spouses perceived general QoL. Life situation and economic situation were the only predictors of the spouses' QoL, which emerged during the entire year after the patient's stroke event, while well being, education, own illness, social network and ADL ability (patient) emerged at one or two occasions.

CONCLUSION: The psychosocial factors -- life situation, well being, social network, education and economy -- are important in predicting QoL among spouses of stroke patients, and these predicting factors change over time. Determining the predictors at an early stage, and continuously over time, will help to focus clinical nursing interventions on the spouses' changing needs.

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Activities enjoyed by patients with dementia together with their spouses and psychological morbidity in carers

Caring for a spouse with dementia is stressful and respite care is sometimes used to reduce this burden. Spouses may find some aspects of caring rewarding but the literature on positive aspects of caring is limited. To describe activities enjoyed by patients with dementia together with their spouses, and examine their relationship with psychological morbidity in carers. A convenience sample of 46 patients with mild to moderate dementia (91% with Alzheimer's disease, AD) and their spouses were interviewed at home. Spouses completed the Pleasant Events Schedule (PES-AD) to identify activities enjoyed by patients and spouses on their own and together. Psychological morbidity in spouses was assessed using the General Health Questionnaire (GHQ-12). Cognitive functions, and non-cognitive symptoms were also assessed in patients. Multiple regression analysis using age, Mini-Mental State Examination, Cornell Scale for Depression in Dementia, Revised Memory and Behaviour Problems (RMBP) checklist frequency, and PES-AD- together scores as independent variables found PES-AD-together and RMBP-frequency to be independent predictors of GHQ-12 scores in spouses, but the model could explain only 28% of variance. Facilitating activities that are enjoyed by both patients with dementia and spouses may be an alternative intervention strategy to reduce carer burden.

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How spouses evaluate Nursing Home Placement of their demented partner: a study about the end of perseverance time

Aim: This study was about the final decision by spouses to have their demented partner placed in a nursing home. The central question was whether the admission took place in the right time in their point of view.

Method: Fourteen partners of persons with dementia evaluated the nursing home placement. They were interviewed at home using a semi-structured questionnaire. Grounded theory was used to explore the process of decision-making. In addition to the interviews, quantitative data were used from a 2-year follow-up study.

Results: Results underline that the placement decision had to be made in phases over time. The first decision is about placement of the relative on a waiting list, and the second decision is about the actual placement in a nursing home once a place becomes available. This second and final decision often had to be taken under time pressure to avoid a place in the nursing home being left empty. If they had been given more time and space to reconsider their admission decision, most partners said they could have had continued providing homecare longer. During the investigation, the following classification in timeliness of the admission emerged: Placement was at the right time, too early, too late or out of control.

Conclusion: Spouses indicated they could have kept on giving care for a longer period of time if they had been given more time and space to make their final decision about the admission of their partner. It may be helpful for informal and formal carers to focus on perseverance time in considering placement or prolonged support at home. Placement at an appropriate time may lead to a higher degree of well-being of informal carers before and especially after the admission.

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Stress affects carers before patient’s first visit to a memory clinic

OBJECTIVE: To measure and compare the burden on spousal carers of patients with and without dementia who were consulting a memory clinic for the first time.

METHODS: We included 413 dyads of patients and their spousal carers consulting a memory clinic for the first time. Of them 276 had a diagnosis of Cognitive Impairment No Dementia (CIND) and 137 had a dementia diagnosis. The burden of care was measured with the Relative Stress Scale (RSS). The gender of patients and their spouses was recorded and measures of cognition, depression and functional capacity of the patients were included in the analysis.

RESULTS: Of all carers, 27.6% had a score on the RSS of above 23, indicating a moderate to severe burden. The corresponding score for carers of patients with CIND was 20.3%, compared to 42.2% for those with dementia. However, in a linear regression analysis with RSS as the dependent variable, the dementia diagnosis variable was not significant. Three variables were significant (p < 0.05) and has explained 34% of the variance of the score on the RSS, impaired function in activities of daily living (ADL) was the most important variable (beta 0.56), followed by female gender of carers (beta 0.19) and the extent of the symptoms of depression observed in the patients (beta 0.10).

CONCLUSION: Carers of both CIND and dementia patients when attending a memory clinic for initial diagnostic assessment experience high levels of stress. Impaired function in ADL in patients is the strongest predictor of this stress.

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Barriers and facilitators for male carers in accessing formal and informal support: A systematic review

Unpaid, informal carers play a vital role in supporting people with long-term conditions. Being a carer can be challenging and carers may need support but they frequently fail to access it. Compared to research investigating the experiences of female carers, research with male carers is underdeveloped. The available evidence suggests male and female carers have many experiences in common but some research suggests that compared to females, male carers are even less likely to access services.

The aim of this systematic review was therefore to synthesise research investigating adult male carers’ experiences of accessing formal and informal support focussing on the barriers and facilitators.

Nine health and social care electronic databases were searched (e.g. PubMed, PsychINFO, CINAHL Plus, Social Policy and Practice, Scopus). Seven studies (five qualitative and two quantitative) fitting the inclusion criteria were identified. All came from North America and most focussed on older carers caring for people with dementia. All seven studies described barriers to accessing support and three highlighted facilitators. Male carers felt committed to their role, seeing it as their responsibility but were often ambivalent about seeking help. Insufficient service information was frequently emphasised. Participants highlighted positive past experiences and professional or voluntary sector support in providing information and helping access services.

Research into male carers’ experiences in accessing support remains underdeveloped. Research that distinguishes between, for example, the experiences of spouses and sons and with direct comparisons between male and female carers is needed. Whether gender specific services would benefit male carers remains undetermined.

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The oldest carers: A narrative review and synthesis of the experiences of carers aged over 75 years

As populations age, numbers of older carers are increasing. These carers play a vital role in supporting others, often partners or spouses with dementia.

This narrative review synthesised peer-reviewed evidence published over the last two decades concerning the experiences of carers aged over 75 years, specifically exploring whether their experiences differ from those of younger carers. Four electronic databases were searched and 4102 publications were identified. Eighteen studies involving over one thousand carer participants were included (11 quantitative, 6 qualitative, and 1 mixed-methods study). Most studies came from Europe or North America and almost all were cross-sectional, but few directly compared younger and older carers, making it difficult to determine whether carers’ experiences vary with age. Quantitative studies generally emphasised the challenges of caring and frequently highlighted, for example, relationships between carer characteristics and negative outcomes such as burden. Qualitative studies were often more positive, emphasising carers’ active responses and the rewards of caring. The normality of caring was highlighted, with some suggesting that caring may be less challenging for older than for younger carers.

As with younger carers, being an older carer can be both rewarding and difficult. Our understanding of the experiences of these older carers would be enhanced with more research specifically comparing older and younger carers or comparing older carers and those not in a caring role. Carers are diverse and future research should explore the experiences of carers from different demographic groups. More longitudinal research perhaps focusing on caring dyads and mutual caring is needed.

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The work of elderly men caregivers: from public careers to an unseen world

Approximately 1,000,000men currently care for spouses with cognitive impairment after leaving market-economy careers through normative or early retirement. In the process, they made the difficult transition from work in the public arena to the private, largely invisible world of family care. This article explores how elderly men caregivers adapt to such drastic changes in social location, what resources they call upon to ameliorate the impact of those changes, and what we can learn from their experiences that will inform future research and practice. Data are from a qualitative study of thirty elderly men care-givers in Rochester, New York. Two major themes emerged, demonstrating both struggle and success. The most significant struggle was coping with the isolation of home care; by contrast, many men were able to successfully make the transition through the use of a style of caregiving that incorporated a combination of management and nurturing skills.

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