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Prevalence of depression and burden among informal care-givers of people with dementia: a meta-analysis
- Authors:
- COLLINS Rebecca N., KISHITA Naoko
- Journal article citation:
- Ageing and Society, 40(11), 2020, pp.2355-2392.
- Publisher:
- Cambridge University Press
This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so. (Edited publisher abstract)
Stressors and caregivers’ depression: multiple mediators of self-efficacy, social support, and problem-solving skill
- Authors:
- TANG Fengyan, et al
- Journal article citation:
- Social Work in Health Care, 54(7), 2015, pp.651-668.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, the authors tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss. (Edited publisher abstract)
Issues of care are issues of justice: reframing the experiences of family caregivers of children with mental illness
- Authors:
- SUITER Sarah VanHooser, HEFLINGER Craig Anne
- Journal article citation:
- Families in Society, 92(2), April 2011, pp.191-198.
- Publisher:
- The Alliance for Children and Families
Studying the role of caregiver strain and its effect on the children involved is important, but it is also important to examine the effects of caregiving on the caregivers themselves. This is particularly true for people who care for children who are experiencing mental illness, and even more so for caregivers living in rural areas who often have increased difficulties as a result of longer travel times, lack of specialty services, and fewer community resources. While there is ample evidence documenting caregiver burden, it continues to go largely unaddressed by mental health care systems and economic and legal structures that might be altered to better support primary caregivers. This article, through the use of vignettes, reports on the lived experiences of 42 rural primary caregivers for children with mental health issues and applies a justice framework to suggest possible alternatives for building mechanisms for caregiver support. The framework allows for an understanding of caregiving that takes the burdens of care work seriously; provides structural supports for caregivers; and connects mental health disciplines with feminist social frameworks to better identify some of the causes of caregiver stress.
Effect of the Meeting Centres Support Program on informal carers of people with dementia: Results from a multi-centre study
- Authors:
- DROES R-M, et al
- Journal article citation:
- Aging and Mental Health, 10(2), March 2006, pp.112-124.
- Publisher:
- Taylor and Francis
Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research. Within the framework of a study into the national implementation of the MCSP, it was investigated whether the positive effects found in carers that participated in the first Amsterdam Meeting Centres, were also achieved in other regions of The Netherlands. A pre-test–post-test control group design with matched groups was applied. In total, 94 carers in the MCSP in eight meeting centres and 34 carers of dementia patients who frequented regular psychogeriatric day care (PDC) in three nursing homes were included in the study. During the study period 23 carers of the MCSP group and 21 carers of the PDC group dropped out. At baseline and after seven months indicators of burden (psychological and psychosomatic symptoms, feelings of burden and time between start of support and institutionalization of the persons with dementia) were measured, as well as potential determinants of burden (sense of competence, coping strategies, experienced support, loneliness and the emotional impact of behaviour problems). Though on a group level no effect was found, either in psychological and psychosomatic symptoms or in the determinants of burden, a subgroup of carers who felt lonely (n?=?22) at baseline benefited significantly more from the MCSP than from PDC in terms of psychological and psychosomatic symptoms. A majority of MCSP carers (82.1%) experienced less burden and more professional support. After seven months significantly fewer persons with dementia in the MCSP (4%) were institutionalized as compared to the patients in PDC (29%). Patients in the MCSP participated for a longer period of time before institutionalization. Although the effect on sense of competence of carers that was found in the Amsterdam study was not found in this multi-centre study, the effect on burden and delayed institutionalization of the person with dementia were confirmed. The integrated MCSP also proved more effective than PDC in decreasing psychological and psychosomatic symptoms in lonely carers. Further dissemination of the MCSP is therefore recommended.
Sense of coherence, burden and mental health in caregiving: a systematic review and meta-analysis
- Authors:
- DEL-PINO-CASADOA Rafael, et al
- Journal article citation:
- Journal of Affective Disorders, 242(1), January 2019, pp.14-21.
- Publisher:
- Elsevier
Background: Informal caregiving is associated with a number of negative effects on carers’ physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers. Method: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence and subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings. Results: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiver burden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higher levels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect. Limitations: Most of the studies included in this review were cross-sectional. Conclusions: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden. (Edited publisher abstract)
Voices unheard: exploring the caregiver experience for caregivers of emerging adults with mental illness
- Authors:
- MILLER Kirsty, et al
- Journal article citation:
- Families in Society, 98(4), 2017, pp.310--18..
- Publisher:
- The Alliance for Children and Families
The purpose of this study was to obtain perspectives from caregivers of emerging adults (ages 16–25) who were accessing mental health care services. Using constructivist grounded theory, nine caregivers participated in focus groups or individual interviews. Results suggest that caregivers' experiences centred on three areas: the emotions that they experienced (having frustration, feeling burdened, not being helped, and perceiving a lack of options), the actions that they took in their caregiver role (care facilitation and advocacy), and the external forces that perpetuated negative emotions and adversely impacted caregiver ability to facilitate and advocate (crisis-driven system, wait times, and substance misuse). Findings illustrate the impact of external forces on caregiver feelings and actions, reflecting a system that perpetuates the cycle of wait times and helplessness. (Publisher abstract)
Cognitive impairment in Parkinson's disease: impact on quality of life of carers
- Authors:
- LAWSON R.A., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(12), 2017, pp.1362-1370.
- Publisher:
- Wiley
Background: The quality of life (QoL) of informal caregivers of people with Parkinson's disease (PD) (PwP) can be affected by the caring role. Because of cognitive symptoms and diminished activities of daily living, in addition to the management of motor symptoms, carers of PwP and cognitive impairment may experience increased levels of burden and poorer QoL compared with carers of PwP without cognitive impairment. This study aimed to investigate the impact of cognitive impairment in PD upon QoL of carers. Methods: Approximately 36 months after diagnosis, 66 dyadic couples of PwP and carers completed assessments. PwP completed a schedule of neuropsychological assessments and QoL measures; carers of PwP completed demographic questionnaires and assessments of QoL. Factor scores of attention, memory/executive function and global cognition, as derived by principal component analysis, were used to evaluate cognitive domains. Results: Hierarchical regression analysis found lower Montreal Cognitive Assessment was a significant independent predictor of poorer carer QoL, in addition to number of hours spent caregiving, carer depression and PD motor severity. Attentional deficits accounted for the largest proportion of variance of carer QoL. Carers of PwP and dementia (n = 9) had significantly poorer QoL scores compared with PwP and mild cognitive impairment (n = 18) or normal cognition (n = 39) carers (p < 0.01). Conclusions: Attentional deficits were the strongest predictor of carer QoL compared with other cognitive predictors. Carers for those with PD dementia reported the poorest QoL. Interventions such as respite or cognitive behavioural therapy to improve mood and self-efficacy in carers may improve carer QoL. (Publisher abstract)
Symptoms among partners, family, and friends of individuals with posttraumatic stress disorder: associations with social support behaviors, gender, and relationship status
- Authors:
- CREVIER Myra G., et al
- Journal article citation:
- Journal of Aggression Maltreatment and Trauma, 24(8), 2015, pp.876-896.
- Publisher:
- Taylor and Francis
Social support represents an important recovery factor for individuals with posttraumatic stress disorder (PTSD). Nevertheless, partners, family, and friends who take on the role of caregiver for individuals with PTSD might face multiple difficulties. For example, they are at risk for developing anxiety and depressive symptoms, which could negatively affect their ability to offer support. This study examined the associations between the difficulties of individuals with PTSD (i.e., symptoms and level of functioning), their caregivers’ (partners, family, and friends) anxiety and depressive symptoms, and social support behaviours according to 2 variables: relationship status and gender. Sixty-five individuals with PTSD and either their partner, family member, or friend filled out questionnaires and participated in a trauma-oriented discussion. Social support behaviours were coded. Results revealed no associations between the difficulties of individuals with PTSD and their caregivers’ symptoms. However, caregivers’ depressive symptoms were negatively associated with the quality of some of their social support behaviours. Moreover, relationship status and gender were significant moderators, indicating stronger negative associations between anxiety and depressive symptoms and some social support behaviours of men and caregiving partners. Male caregivers could have difficulties offering appropriate support and responding to traditional masculine roles (e.g., being strong and self-reliant) when they report symptoms themselves. Partners are particularly involved in the everyday life of individuals with PTSD. Thus, they could have difficulties keeping an optimal emotional distance to offer support when they report symptoms themselves. Future directions as well as clinical implications are discussed. (Edited publisher abstract)
Parents of children with mental illness: exploring the caregiver experience and caregiver-focused interventions
- Authors:
- MENDENHALL Amy N., MOUNT Katherine
- Journal article citation:
- Families in Society, 92(2), April 2011, pp.183-190.
- Publisher:
- The Alliance for Children and Families
Serious mental illness in children often affects more than just the children - it can impact the entire family. Parents become both caregivers, managing the behaviour of their children, and case managers, coordinating the services needed by their children. Parent caregivers often struggle to meet the needs of their entire family, and caregiver strain manifests in all areas of parents’ lives including work, mental and physical health, and social and family relationships. Previous research has identified many predictors of caregiver strain including severity of child’s illness, race, and social support. These parents need strengths-based, parent-focused interventions to help them care for themselves and their family in a healthy, effective manner. This article presents a brief summary of four types of interventions for parents of children with mental illness and the supporting research. Education, support, and skill-building are all important components in parent interventions. A parent focus for interventions and research will decrease caregiver strain and create a healthier environment for the entire whole family. The authors conclude that clinical intakes should include assessment of parental strain to determine the needs of the entire family in the treatment process.
Manual for the adult carers quality of life questionnaire (AC-QoL)
- Authors:
- ELWICK Hannah, et al
- Publisher:
- Princess Royal Trust for Carers
- Publication year:
- 2010
- Pagination:
- 10p.
- Place of publication:
- Woodford Green
There are nearly six million people providing unpaid care in the UK. In the National Carer’s Strategy, it was reported that 71% of carers have had health problems which included poor physical and mental health. In turn poorer physical and mental health can affect the person’s ability to care, with the majority of these carers reporting that their health problems also affected the person they were caring for. This manual is intended to provide researchers and practitioners in the field of caring with a relevant and accessible instrument to assess the quality of life of adult, unpaid carers. The questionnaire can be used on a one off basis for the purpose of assessment, or as a pre and post intervention tool to measure change and the impact of support. This manual will be of interest to professionals in the fields of health and social care as well as those researching care-giving and caring organisations themselves.