Spousal Caregivers Research Articles

Experiences of Older Spousal Caregivers for Caring a Person with a Memory Disorder.

Memory disorders have become a major public, social, and health concern among the aging population, and many of those who are affected are cared for at home by their spouse. The aim of this qualitative study was to describe the individual experiences of 10 older caregivers who were looking after a spouse with a memory disorder in 2016. Data were collected from volunteers who were recruited from a memory clinic at a Finnish health center using the thematic interview method and processed using inductive content analysis. The participants were six female and four male caregivers who had been married for over 10 years. The results indicated that caring for a spouse with a memory disorder involved a number of factors. These included the impact of social networks and changes in their everyday life, collaboration with service providers, and the caregivers’ well-being. However, our study showed that caregivers felt that the formal multiprofessional services they received were fragmented, which means that they were less likely to provide a holistic approach to caregivers’ situations. Better multiprofessional cooperation is needed in the community, including services such as memory clinics, home care and practical services, day centers, and short-term respite in care homes.

Psychometric properties of the FACT-G quality of life scale for family caregivers of cancer patients

PurposeThis study aimed to examine psychometric properties of a caregiver version of the well-established Functional Assessment of Cancer Therapy-General Scale (FACT-G) after conducting focus groups and obtaining expert input.MethodsWe made minor wording modifications to the Patient FACT-G to enable caregivers to report how the illness affected their overall quality of life (QOL) and well-being on four subscales (physical, social, emotional, functional). We tested the acceptability, precision, factor structure, reliability and validity of the Caregiver FACT-G among partners of prostate cancer patients (N = 263) and caregivers (spouses, siblings, adult children) of patients with advanced cancer (breast, lung, colorectal, prostate) (N = 484) using data from two Randomized Clinical Trials (RCTs).ResultsWith a factor structure similar to the Patient FACT-G, Caregiver FACT-G was acceptable and precise in measuring caregiver QOL, with high inter-factor correlations and internal consistency reliability (Cronbach’s alphas 0.81–0.91). The Caregiver FACT-G had strong convergent validity demonstrated by significant positive correlations with caregiver self-efficacy (0.25–0.63), dyadic communication (0.18–0.51), and social support (0.18–0.54) in both samples. It also had strong discriminant validity evidenced by significant inverse correlations with negative appraisal of caregiving (− 0.37 to − 0.69), uncertainty (− 0.28 to − 0.53), hopelessness (− 0.25 to − 0.60), and avoidant coping (− 0.26 to − 0.58) in both samples. Caregivers’ baseline FACT-G scores were significantly associated with their physical (0.23) and mental well-being (0.54; 4-month follow-up) and their depression (− 0.69; 3-month follow-up), indicating strong predictive validity.ConclusionThis is the first study evaluating the psychometric properties of the Caregiver FACT-G. More psychometric testing is warranted, especially among caregivers of diverse sociocultural backgrounds.

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

ABSTRACTThis 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.

Dyadic approach to supervised community rehabilitation participation in an Asian setting post-stroke: exploring the role of caregiver and patient characteristics in a prospective cohort study

ObjectiveTo study the association of caregiver factors and stroke survivor factors with supervised community rehabilitation (SCR) participation over the first 3 months and subsequent 3 to 12 months post-stroke in...

Reflections on the Spiritual Lives of Caregivers of Spouses with Dementia

Observations from research on the spiritual lives of persons caring for their spouses with dementia provide insight into the spirituality of caregivers. The author relates her personal journey of spirituality with findings from narratives of caregivers and the results of grace, joy, and trust. The lived experiences of caregivers who express faith in Jesus enable them to rest and love amid their caregiving. These insights can be useful when applied to nursing care and nursing education.

Characteristics and Prevalence of Depression Symptoms in Caregivers of Patients Undergoing Palliative Care

Family role in taking care of patients undergoing palliative care leads to complex, multidimensional responsibility which may have consequences to the mental health of primary caregivers. Studies have shown that 40 to 70 percent of caregivers experience symptoms of depression. The general objective of this study was to determine the characteristics and prevalence of depressive symptoms among caregivers of patients in palliative care. The population comprised of caregivers of patients undergoing palliative care at the Kenyatta National Hospital. A cross-sectional study was used where questionnaires were administered using Beck‘s Depression Inventory and a researcher designed socio-demographic characteristics questionnaire for the caregivers. The results showed that 62.7% of the caregivers presented with symptoms of depression. This is four times higher as compared to the general population. The severity of the depressive symptoms ranged from mild to severe with the majority experiencing symptoms of severe depression. Spousal caregivers had the highest prevalence of depressive symptoms followed by those who were taking care of their children. The recommendations include having healthcare providers do routine screening for depression in family caregivers and not just on patients alone.

Long-Term Care Use During the Last 2 Years of Life in Sweden: Implications for Policy to Address Increased Population Aging

ObjectivesTo map out the total use of long-term care (LTC; ie, home care or institutional care) during the last 2 years of life and to investigate to what extent gender differences in LTC use were explained by cohabitation status and age at death. DesignThe National Cause of Death Register was used to identify decedents. Use of LTC was based on the Social Services Register (SSR) and sociodemographic factors were provided by Statistics Sweden. Setting and ParticipantsAll persons living in Sweden who died in November 2015 aged ≥67 years (n = 5948). MethodsZero inflated negative binomial regression was used to estimate the relative impact of age, gender, and cohabitation status on the use of LTC. ResultsWomen used LTC to a larger extent [odds ratio (OR) 2.17, 95% confidence interval (CI) 1.92-2.50] and for a longer period [risk ratio (RR) 1.14, 95% CI 1.11-1.18] than men. When controlling for age at death and cohabitation status, gender differences in LTC attenuated (OR 1.47, 95% CI 1.28-1.72) and vanished in regard to the duration. In the controlled model, women used LTC for 15.6 months (95% CI 15.2-16.0) and men for 14.1 months (95% CI 13.7-14.5) out of 24 months. The length of stay in institutional care was 7.2 (95% CI 6.8-7.5) and 6.2 months (95% CI 5.8-6.6), respectively. Conclusions and ImplicationsA substantial part of women's greater use of LTC was due to their higher age at death and because they more often lived alone. Given that survival continues to increase, the association between older age at death and LTC use suggests that policy makers will have to deal with an increased pressure on the LTC sector. Yet, increased survival among men could imply that more women will have access to spousal caregivers, although very old couples may have limited capacity for extensive caregiving at the end of life.

Caregiving Choice and Caregiver-Receiver Relation: Effects on Psychological Well-being of Family Caregivers in Canada

The psychological well-being of family caregivers is influenced by their relations with care receivers, and whether they have choice in becoming a caregiver. Limited study has explored the interaction effect of caregiver-receiver relations and caregiving choice on caregivers' psychological well-being. This study examines whether the caregiver's perceived choice moderates the association between caregiver-receiver relation and psychological well-being. Using population-based data from the 2012 Canada General Social Survey - Caregiving and Care Receiving (n = 5,285), this study applies regression and ANCOVA analyses. Results show family caregivers for spouses and children report significantly worse psychological well-being, whereas having choice to become a caregiver is associated with better psychological well-being. There was a significant moderation effect of caregiving choice on the association between caregiver-receiver relation and psychological well-being. Findings suggest that more services should be targeted for family caregivers without choice for caregiving as well as those who provide care for their children.

Cognitive limitations in older adults receiving care reduces well-being among spouse caregivers.

A large number of older adults have physical and/or cognitive challenges and require help to manage everyday activities. Many older adults receive care from a spouse. Over the long term, this has adverse consequences for caregiver health and well-being. Less is known about the outcomes associated with the early transition to becoming a spousal caregiver. Nor is it clear how mild-cognitive decline worsens caregiver outcomes. The present study uses dyadic data from 588 couples in the National Social Life, Health, and Aging Project to compare mental and social well-being in marital partners who became a spousal caregiver versus those who remained noncaregivers or became caregivers for someone other than a spouse between 2010 and 2015. Cognitive ability was assessed using a validated version of the Montreal Cognitive Assessment. Moderated Actor-Partner Independence Models revealed that becoming a caregiver was associated with an increase in perceived stress in both men and women, and an increase in anxiety among men. Partners' cognitive limitations moderated, in a dose-dependent fashion, the association between becoming a caregiver and changes in well-being. Specifically, becoming a caregiver was associated with increased support from friends for wives at lower levels of husband's cognitive ability, and with increased anxiety for husbands at lower levels of wife's cognitive ability. Associations were independent of demographic characteristics and physical limitations. We discuss the value of using population-based samples to study the transition to caregiving and implications for interventions during the early transition to a caregiving role for even modestly cognitively impaired partners. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

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. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

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

AbstractThe felt obligation to return a benefit, termedreciprocity, 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. 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. 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. Imbalances and non-reciprocity in the care exchange led to frustrations and threatened the care relationships.

Preparedness, Quality of Life, and Burden on Family Caregivers (S736)

•Recognize validated measures to assess caregiver outcomes for research and clinical care.•Apply study findings to clinical practice by incorporation of caregiver learning and support needs into team care plan. While family caregivers are expected to be heavily involved with the day-to-day medical and personal care for individuals with serious illness, they often feel woefully unprepared for these responsibilities. Describe perception of preparedness, quality of life and burden by caregivers of patients with serious illness who are referred to home-based palliative care (HBPC). Patients and caregivers were contacted via phone to obtain consent for survey completion upon referral to HBPC. Patients or caregiver proxies completed the Edmonton Symptom Assessment Scale. Caregivers completed the Preparedness for Caregiving Scale, PROMIS-10 Quality of Life (QoL) and Zarit Burden Scale. Data were available for 95 caregivers, 40 of whom were spouses. Mean scores for caregiver outcomes are as follows with arrows indicating direction of positive scores: Preparedness (↑22.5±6.1; range 0-32); QoL-physical (↑49.2±4.6; range 16-68); QoL-mental (↑48.2±3.8; range 21-68); burden (↓13.2±9.2; range 0-48). In adjusted linear regression models, higher symptom burden for patients was significantly associated with caregivers' lower perception of preparedness (p<.01) and increased burden (p=.01) but not with caregiver QoL. Spousal caregivers were significantly more likely to report lower preparedness and QoL (both, p<.01) and increased burden (p=.05) compared to other caregivers. While caregivers of members with serious illness appear to feel prepared, report good QoL and mild burden, it is important to note that this sample may be highly biased due to the nature of the research data collection process. Other notable findings are the impact of patient symptoms on caregivers' feelings of preparedness and burden and the increased attention and support needed by spousal caregivers.

The Arabic and Hebrew versions of the caregiving ambivalence scale (CAS): examining its reliability, validity, and correlates among Israeli caregivers of individuals with Alzheimer’s disease

Objectives: Providing care for family members with Alzheimer’s disease (AD) might awaken ambivalent feelings in caregivers. This topic, however, has received little research attention. Having reliable and valid scales is a first step in expanding our knowledge in this area, particularly among different cultural groups, as ambivalent emotions have been found to be dependent on culture. Thus, the aims of this study were (1) to test the reliability and validity of the Caregiving Ambivalence Scale (CAS) among Israeli Jewish and Arab caregivers of individuals with AD and (2) to examine the contribution of caregivers’ ethnocultural affiliation (Jewish/Arab) to the experience of ambivalent feelings.Methods: Structured face-to-face interviews were conducted with 370 family caregivers (adult children and spouses) of elderly people with AD. Approximately half of the participants (55.3%) were Israeli Jews (79.5% female; 61.3% adult children; mean age = 65.52), and the rest (44.7%) were Israeli Arabs (87.4% female; 72% adult children; mean age = 54.28).Results: Our findings indicated that the CAS has good-to-excellent internal reliability and validity both in Hebrew and Arabic. Additionally, as expected, ethnocultural affiliation (Jewish/Arab) made a unique – although modest – contribution to the explanation of ambivalence as reflected in the CAS score, with Arab caregivers reporting significantly higher levels of ambivalent feelings than did Jewish caregivers.Conclusions: The CAS is a reliable and valid structured measure to assess ambivalent feelings among Arab and Jewish caregivers of individuals with AD in Israel. Cultural context is a unique factor in understanding their mixed emotions.

Communication between Advanced Cancer Patients and Their Family Caregivers: Relationship with Caregiver Burden and Preparedness for Caregiving

ABSTRACT Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers’ reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples’ communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication’s influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.

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

ABSTRACTVietnamese 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.

A Novel Scale for Assessing the Burden of Caregiving for Functionally Compromised Patients: Proposal and Validation.

BackgroundDisability not only burdens the patient, but also the caregiver. To quantify this caregiving burden, we propose a simple four-part questionnaire tool. Our objective is to validate this questionnaire by administering it to caregivers who oversee patients with low back pain and are functionally compromised.MethodsTwenty-five spouse caregivers who were taking care of in-patients awaiting surgery for various lumbar spine pathologies were shortlisted. The content-validated questionnaire was administered on different occasions during the care recipient’s treatment. Cronbach’s α was calculated to assess internal consistency. Interrelationships between the care recipient’s pain score, extent of functional compromise, and caregiver burden were calculated. The questionnaire’s ability to track changes in the caregivers’ attitudes over time was assessed.ResultsThe percentage of caregiver burden before the surgery of the care recipient was 52.5. This increased significantly to 61.1% (P=0.001) 3 days after surgery, but was found to decrease to 32.5% (P<0.001) a month after the surgery; demonstrating the questionnaire’s efficacy to track changes. Cronbach’s alpha of 0.948 signifies the questionnaire’s excellent internal consistency. Pearson’s correlation coefficient (r) between the care recipient’s pain score and caregiver’s burden score was 0.41 (P=0.04), and between the care recipient’s disability score and caregiver’s burden score was 0.9 (P<0.001).ConclusionThe proposed questionnaire is consistent and can track changes in a caregiver’s attitude over time. It can be adopted for clinical use to assess the burden of caregiving for functionally compromised patients.

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

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. 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. 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 (α ≥0.93) and test-retest reliability (rs = 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). 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.

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.

Supplemental Material for Cognitive Limitations in Older Adults Receiving Care Reduces Well-Being Among Spouse Caregivers

Supplemental Material for Cognitive Limitations in Older Adults Receiving Care Reduces Well-Being Among Spouse Caregivers

Caregiver Psychological Distress: Longitudinal Relationships With Physical Activity and Diet.

Given limited longitudinal research with caregivers (CGs, n = 122) of spouses with Alzheimer disease, and demographically matched noncaregivers (NCGs, n = 117), we compared these groups on psychological distress (anxiety, depression), burden, and health behaviors over 2 years. Analyses examined group differences in relationships of micronutrient recommended daily allowances (RDAs) and physical activity considering hours of care, psychological distress, and burden. Participants were measured and assessed on whether they met micronutrient intake and physical activity totaled over an average week. Regression analyses showed a total effect whereby NCGs had greater increases in meeting micronutrient allowances (RDAs) than CGs (b = 10.91, standard error [SE] = 4.74, 95% confidence interval [CI]: 1.56-20.26). Additionally, over time, NCGs had greater increases in physical activity, which was mediated by hours of care (b = 0.149, SE = 0.060, 95% CI: 0.034-0.270). These results suggest CGs may lack proper nutrients, and care hours may influence their health behaviors.