Video message from Dr John Beard, Director for Life Course and Ageing Department, World Health Organization, at the ComSA Forum 2017 on Friday, 18 August. Watch here.
ADELMAN RD, TMANOVA LL, DELGADO D, DION S, & LACHS MS. (2014). CAREGIVER BURDEN: A CLINICAL REVIEW. JAMA, 311(10), 1052–1060. http://doi.org/10.1001/jama.2014.304
Importance: Caregiver burden may result from providing care for patients with chronic illness. It can occur in any of the 43.5 million individuals providing support to midlife and older adults. Caregiver burden is frequently overlooked by clinicians. Objectives: To outline the epidemiology of caregiver burden; to provide strategies to diagnose, assess, and intervene for caregiver burden in clinical practice; and to evaluate evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress. Evidence: Cohort studies examining the relation between demographic and social risk factors and adverse outcomes of caregiver burden were reviewed. Review of recent meta-analyses to summarize the effectiveness of caregiver burden interventions were identified by searching Ovid MEDLINE, AgeLine, and the Cochrane Library. Results: Risk factors for caregiver burden include female sex, low educational attainment, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and lack of choice in being a caregiver. Practical assessment strategies for caregiver burden exist to evaluate caregivers, their care recipients, and the care recipient’s overall caregiving needs. A variety of psychosocial and pharmacological interventions have shown mild to modest efficacy in mitigating caregiver burden and associated manifestations of caregiver distress in high-quality meta-analyses. Psychosocial interventions include support groups or psychoeducational interventions for caregivers of dementia patients (effect size, 0.09-0.23). Pharmacologic interventions include use of anticholinergics or antipsychotic medications for dementia or dementia-related behaviors in the care recipient (effect size, 0.18-0.27). Many studies showed improvements in caregiver burden–associated symptoms (eg, mood, coping, self-efficacy) even when caregiver burden itself was minimally improved. Conclusions and Relevance: Physicians have a responsibility to recognize caregiver burden. Caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.
BROWN, R. M., & BROWN, S. L. (2014). INFORMAL CAREGIVING: A REAPPRAISAL OF EFFECTS ON CAREGIVERS. SOCIAL ISSUES AND POLICY REVIEW, 8(1), 74–102. http://doi.org/10.1111/sipr.12002
For decades caregiver distress (psychological and physical) has been considered an inevitable outcome of providing care for family members, loved ones, and others who require assistance. This negative assessment of informal caregiving pervades not only peer-reviewed scientific articles, but also caregiving-relevant agency reports, fact sheets, policy recommendations, advice columns, and media discussions. Our review critically examines this assessment in light of important methodological limitations of supporting studies, and considers theory and research that suggest an alternative appraisal of caregiving. We find that the case for an overall negative evaluation of caregiver effects is, for the most part, unjustified. Indeed, recent data suggest that giving may yield beneficial health and well-being outcomes, including reduced mortality for informal caregivers. An alternative, more balanced view of caregiving has important implications for research and theory, caregiver assessment and intervention, and public policy.
CHAN, A., MALHOTRA, C., MALHOTRA, R., RUSH, A. J., & ØSTBYE, T. (2013). HEALTH IMPACTS OF CAREGIVING FOR OLDER ADULTS WITH FUNCTIONAL LIMITATIONS RESULTS FROM THE SINGAPORE SURVEY ON INFORMAL CAREGIVING. JOURNAL OF AGING AND HEALTH, 25(6), 998–1012. http://doi.org/10.1177/0898264313494801
Objectives: To estimate the health impact, in terms of depression, self-rated health, and health services utilization, of providing care to older adults (75+) requiring human assistance in at least one activity of daily living (ADL) limitation. Method: Data from 1,077 caregivers and 318 noncaregivers, interviewed in the Singapore Survey on Informal Caregiving, was used to examine differences in depressive symptoms, self-rated health, and number of outpatient visits in the last 1 month between caregivers and noncaregivers. Multivariate models for the outcomes, adjusting for characteristics of the caregiver/noncaregiver and care-recipient/potential care recipient, were run. Results: Caregivers were more depressed, had poorer self-rated health, and had a higher rate of outpatient visits in the past month compared to noncaregivers. Discussion: The study indicates the need for support services to family caregivers of older adults with ADL limitations.
COHEN, C. A., COLANTONIO, A., & VERNICH, L. (2002). POSITIVE ASPECTS OF CAREGIVING: ROUNDING OUT THE CAREGIVER EXPERIENCE. INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, 17(2), 184–188. http://doi.org/10.1002/gps.561
Objectives: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes. Method: This study used a national sample of caregivers derived from the Canadian Study of Health and Aging (part 2). Two hundred and eighty-nine caregivers caring for seniors living in the community were questioned about their experience of caregiving. Caregivers were asked whether they could identify any positive aspects related to their role, the type of positive aspects and to rate their feelings about caring. Using a conceptual model developed by Noonan and Tennstedt (1997), a staged stepwise multiple regression approach was used factoring the background/contextual variables, stressor variables (3 MS score, ADL limitations), mediator variables (positive aspects of caregiving, number of services used) and outcome variables (depression, burden and self-assessed health measures) into the model. Results: Two hundred and eleven caregivers (73%) could identify at least one specific positive aspect of caregiving. An additional 20 (6.9%) could identify more than one positive aspect. Positive feelings about caring were associated with lower CES-D scores ( p < 0.001), lower burden scores ( p < 0.001) and better self assessed health ( p < 0.001). Conclusion Clinicians should inquire about the positive aspects of caregiving if they are to fully comprehend the caregiver experience and identify risk factors for negative caregiver outcomes. Copyright © 2002 John Wiley & Sons, Ltd.
KONSTAM, V., HOLMES, W., WILCZENSKI, F., BALIGA, S., LESTER, J., & PRIEST, R. (N.D.). MEANING IN THE LIVES OF CAREGIVERS OF INDIVIDUALS WITH PARKINSON’S DISEASE. JOURNAL OF CLINICAL PSYCHOLOGY IN MEDICAL SETTINGS, 10(1), 17–25. http://doi.org/10.1023/A:1022849628975
This study explores the contribution of finding meaning in general and finding meaning specific to caregiving as potentially important explanatory variables in predicting well-being in caregivers of individuals with Parkinson’s disease. Fifty-eight caregivers of individuals diagnosed with Parkinson’s disease were provided self-report questionnaires to assess well-being and meaning (general and specific). Results showed a significant proportion of the variance of positive affect (PASS) and negative affect (DYS) related to well-being, as assessed by the Multiple Affect Adjective Checklist – Revised. Purpose and Existential Vacuum (two subtests of the Life Attitude Profile – Revised used to assess general meaning) predicted well-being. Purpose predicted 41.8% of the variance related to PASS; Existential Vacuum predicted 30.8% of the variance related to DYS. Meaning related specifically to caregiving (Finding Meaning Through Caregiving Scale) did not explain any additional variance. Our results suggest that finding meaning, beyond meaning specifically associated with caregiving, is the key to understanding well-being among caregivers of individuals with Parkinson’s disease. The positive construct of finding meaning in general can empower researchers and professionals working with caregivers to better understand the variability in caregiver outcomes as well as assess and intervene more effectively.
LEE, V. Y. W., SEAH, W. Y., KANG, A. W. C., KHOO, E. Y. H., MOOPPIL, N., & GRIVA, K. (2016). MANAGING MULTIPLE CHRONIC CONDITIONS IN SINGAPORE – EXPLORING THE PERSPECTIVES AND EXPERIENCES OF FAMILY CAREGIVERS OF PATIENTS WITH DIABETES AND END STAGE RENAL DISEASE ON HAEMODIALYSIS. PSYCHOLOGY & HEALTH, 0(0), 1–17. http://doi.org/10.1080/08870446.2016.1203921
Objective: Diabetes mellitus (DM) is the commonest cause of end stage renal disease (ESRD). Despite increasing DM-ESRD prevalence and high dependency on care, there is a lack of literature on DM-ESRD caregivers. We sought to explore the perspectives and experiences of caregivers of patients with DM undergoing haemodialysis in Singapore. Design: This study employed an exploratory, qualitative design comprising in-depth interviews with caregivers of DM-ESRD patients.Methods: Semi-structured interviews were conducted with a sample of 20 family caregivers (54.2 ± 12.6 years; 75% female) of DM-ESRD patients. Data were analysed using Thematic Analysis.Results: Key caregiving challenges identified were managing diet, care recipients’ emotions and mobility dependence. Patients’ emotional reactions caused interpersonal conflicts and hindered treatment management. Difficulties in dietary management were linked to patients’ erratic appetite, caregivers’ lack/poor understanding of the dietary guidelines and caregivers’ low perceived competence. Limited resources in terms of social support and finances were also noted. Physical and psychological well-being and employment were adversely affected by caregiving role.Conclusion: This study highlights distinctive aspects of the DM-ESRD caregiving experience, which impact on caregivers’ health and challenge care. Disease management programmes should be expanded to support caregivers in dealing with multimorbidity.
LLOYD, J., PATTERSON, T., & MUERS, J. (2014). THE POSITIVE ASPECTS OF CAREGIVING IN DEMENTIA: A CRITICAL REVIEW OF THE QUALITATIVE LITERATURE. DEMENTIA, 1471301214564792. http://doi.org/10.1177/1471301214564792
Positive aspects of caregiving in dementia have been identified as important in understanding the experiences of carers, yet the research base lacks clear definitions of key concepts. Qualitative research explores carers’ experiences of positive aspects of caregiving in rich detail which lends itself to supporting theory development. The aim of the present review was to critically evaluate the empirical findings of qualitative studies that have explored positive aspects of caregiving in dementia. A systematic search of the literature revealed 14 studies that met this aim. Carers described multiple positive dimensions of caregiving and identified several factors that were important in supporting their positive caregiving experience. The present review evidences a solid base of understanding of the positive aspects of caregiving in dementia from which concepts and theories can be further developed. Clinical and research implications are discussed.
MALHOTRA, C., MALHOTRA, R., ØSTBYE, T., MATCHAR, D., & CHAN, A. (2012). DEPRESSIVE SYMPTOMS AMONG INFORMAL CAREGIVERS OF OLDER ADULTS: INSIGHTS FROM THE SINGAPORE SURVEY ON INFORMAL CAREGIVING. INTERNATIONAL PSYCHOGERIATRICS, 24(08), 1335–1346.
Background: This paper determines care recipient and caregiver characteristics and caregiving dimensions – associated with depression among caregivers of older adults, using path analysis and assesses whether the identified path model differs between spousal and adult child caregivers. Methods: Data from 1,190 dyads comprising care recipients (community-dwelling adults aged ≥75 years with at least one activity of daily living (ADL) limitation) and caregivers (family member/friend most involved in providing care/ensuring provision of care to care recipient), who were interviewed through the Singapore Survey on Informal Caregiving (2010–2011), were used. Using path analysis, we assessed the direct and indirect associations between primary stressors (care recipient’s ADL and instrumental ADL status, and memory and behavior problems), caregiver health status, receipt of assistance from a foreign domestic worker/maid, amount of caregiving, negative reaction to caregiving, caregiver’s self-esteem, perceived emotional support, and caregiver depressive symptoms. Results: Our analysis showed that primary stressors, receipt of assistance from a foreign domestic worker/maid, perceived emotional support, and caregiver health status were directly or indirectly associated with caregiver depressive symptoms, and this association was mediated by negative reaction to caregiving. Caregiver self-esteem mediated the relationship between perceived emotional support and negative reaction to caregiving only among adult child caregivers. Conclusions: The results provide insights into factors associated with depressive symptoms among spousal and adult child caregivers, and help identify targeted interventions for improving caregiver mood.
MEHTA, K. K. (2006). STRESS AMONG FAMILY CAREGIVERS OF OLDER PERSONS IN SINGAPORE. JOURNAL OF CROSS-CULTURAL GERONTOLOGY, 20(4), 319–334. http://doi.org/10.1007/s10823-006-9009-z
It is projected that, in the 21st century, the majority of the world’s older people will be living in Asia. After Japan, Singapore is the most rapidly aging country in Asia. With an increasing life expectancy, many older persons will require health and instrumental care during later life stages. In Singapore, close to 95% of older people co-reside with family members, highlighting the importance of community support for family caregivers. Using a study of 61 principal family caregivers in Singapore, this article highlights the nature of and relationship between caregivers’ stress and gender, patients’ activities of daily living (ADL) and instrumental ADL dependency, and caregivers’ attitudes. Findings from the study suggest that female caregivers tended to be more stressed than male caregivers. Results also showed a significant inverse relationship between the level of stress experienced by caregivers and the ADL and instrumental ADL dependency of patients. Caregivers looking after patients suffering from dementia, Parkinson’s disease, and hypertension were more likely to be stressed than those caring for persons with stroke, depression, and other illnesses. This article concludes by describing some implications of this research for social worker practice and for informal as well as formal support programs for family caregivers.
O’REILLY, D., CONNOLLY, S., ROSATO, M., & PATTERSON, C. (2008). IS CARING ASSOCIATED WITH AN INCREASED RISK OF MORTALITY? A LONGITUDINAL STUDY. SOCIAL SCIENCE & MEDICINE, 67(8), 1282–1290. http://doi.org/10.1016/j.socscimed.2008.06.025
Informal care is a fundamental component of care in the community which, given current demographic trends and increasing prevalence of debilitating chronic disease, is likely to assume even greater significance in future. Research indicates that caregivers are more likely than non-carers to report poor health, though this has usually been measured in terms of psychological or emotional health such as depression or ‘caregiver strain’. Relatively little is known about the effects of caring on physical health. This study examines the health of caregivers recorded in the 2001 Northern Ireland Census and their subsequent mortality over the following four years. Caregivers were a heterogeneous group, with those providing fewer hours of care being relatively more affluent than those providing care at greater intensities. Overall, caregivers had lower mortality risks than non-carers and effects were more pronounced for women, older people, and for those reporting poorer health at the start of the study period. While this study does not exclude the possibility of significant detrimental health effects of caring for some sub-groups of caregivers, it does add support to the growing body of literature which suggests that the positive aspects of caring have been underreported.
SCHULZ R, & BEACH SR. (1999). CAREGIVING AS A RISK FACTOR FOR MORTALITY: THE CAREGIVER HEALTH EFFECTS STUDY. JAMA, 282(23), 2215–2219. http://doi.org/10.1001/jama.282.23.2215
Context: There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality. Objective: To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline. Design Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up. Setting: Four US communities. Participants: A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses. Main Outcome: Measure Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or (4) spouse disabled and helping with mental or emotional strain reported. Results: After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95% CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls. Conclusions: Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.
TAN, S. B., WILLIAMS, A. F., & MORRIS, M. E. (2012). EXPERIENCES OF CAREGIVERS OF PEOPLE WITH PARKINSON’S DISEASE IN SINGAPORE: A QUALITATIVE ANALYSIS. JOURNAL OF CLINICAL NURSING, 21(15-16), 2235–2246. http://doi.org/10.1111/j.1365-2702.2012.04146.x
Aims and objectives. To conduct an in-depth qualitative examination of the experiences of Singaporean people caring for those with Parkinson’s disease (PD). Background. The need to provide care for people with PD will increase with the extended life expectancy of Singaporeans. Caring for people with PD in their own homes for as long as possible is argued to provide psychosocial benefits as well as benefiting the community by delayed institutionalisation and reduced healthcare costs. Design. This study reports the qualitative exploratory component of a large mixed method sequential explanatory design. Methods. Caregivers were selected through a purposive sampling technique and stratified based on the Hoehn and Yahr disease staging. Twenty-one semi-structured interviews were conducted in the home setting. Interviews were audio-taped and transcribed verbatim. The qualitative data were analysed using Ritchie and Spencer’s framework method of qualitative analysis (1994, Analyzing Qualitative Data, Routledge, London). Results. Seventeen (81%) caregivers were women, and their ages ranged from 31 years to more than 71 years. The length of the interview ranged from 42–106 minutes. The interview transcriptions produced 1731 free nodes, and after careful scrutiny for redundancy, 11 sub-themes were identified, which were organised into four key themes. These themes pertained to: (1) Coping and adaptation, (2) Challenges of caregiving, (3) Effects of caregiving on the caregivers and the (4) Need for better caregiver support. Conclusion. The results of this study have provided insights into the coping and well-being of caregivers of people with PD. The progressive nature of PD placed a significant burden on caregivers’ emotional well-being. The findings of this study underscore the need for formal caregiver support and education to reduce strain in caregivers targeted at every stage of PD as there is no clear pattern of disease progression. Relevance to clinical practice. This study has provided important findings that will inform the construction of interventional strategies to reduce caregiver burden and the provision of better support services for caregivers.