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Providing informal care next to paid work: explaining care-giving gratification, burden and stress among older workers
- Authors:
- GRUNWALD Olga, DAMMAN Marleen, HENKENS Kene
- Journal article citation:
- Ageing and Society, 41(10), 2021, pp.2280-2298.
- Publisher:
- Cambridge University Press
With an increasing retirement age, more older adults are combining employment with informal care-giving responsibilities. However, little is known about how older workers experience care-giving activities next to their paid jobs. This study aims to fill this gap by examining how the work situation (i.e. working hours, occupational status and perceived access to human resources practices) is associated with feelings of gratification, burden and stress in care-giving. Using data from the NIDI Pension Panel Survey, we study care-giving experiences – in other words, the extent to which care-giving activities are gratifying, burdensome or stressful – of 1,651 Dutch older workers (age 60–65) who provide care at least once per week. Multivariate analyses reveal that the work situation plays an explanatory role next to socio-demographic factors and indicators of the care-giving situation. Working care-givers who feel they have access to phased retirement and organisational health support experience care-giving as relatively less burdensome and stressful. Moreover, those with access to phased retirement experience relatively higher levels of gratification in care-giving. Our findings suggest that the availability of organisational support relates to lower levels of care-giving burden and stress, and to some extent to higher levels of gratification. Organisations thus play an important role in facilitating the combination of work and care-giving obligations in a context of longer working lives. (Edited publisher abstract)
Burden on caregivers of older patients with bipolar disorder
- Authors:
- DOLS Annemiek, et al
- Journal article citation:
- Aging and Mental Health, 22(5), 2018, pp.686-691.
- Publisher:
- Taylor and Francis
Objectives: Available data suggest high burden on caregivers of patients with bipolar disorder (BD), yet the well-being of patients with BD increasingly depends on family members, partners and close friends. As patients with BD get older, the need for informal care may shift. We aimed to describe the caregivers of older adults with BD (OABD) and explore what patients' and caregivers' characteristics are associated with caregiver burden. Method: Forty-seven caregivers of OABD were questioned about their perceived burden and depressive symptoms. Linear regression analyses were performed to examine the influence of various patients' and caregivers' characteristics on caregiver burden or depression. Results: More than half of all caregivers experienced some degree of burden,and 6.4% reported depressive symptoms. The number of psychiatric admissions and social functioning were the only patients' characteristics associated with higher burden. Caregiver burden was significantly associated with caregiver's other obligations. None of the patient or caregiver characteristics was significantly associated with depression in caregivers of OABD. Conclusion: In OABD, even with few residual symptoms, more than half of all caregivers experience substantial burden. Future studies are needed to confirm if improving social functioning and preventing psychiatric hospitalizations decrease the burden on the caregivers of OABD. (Edited publisher abstract)
The impact of informal care-giving networks on adult children's care-giver burden
- Authors:
- TOLKACHEVA Natalia, et al
- Journal article citation:
- Ageing and Society, 31(1), January 2011, pp.34-51.
- Publisher:
- Cambridge University Press
The global need for care of older parents is growing. This study investigated how the characteristics of Dutch informal care-giving networks affected the adult child's care-giving burden. It used information on 602 informal care-givers from a 2007 study on care-givers who were assisting their older parents. Participants reported on parental and personal characteristics, care activities, experienced burden and characteristics of other informal care-givers. Findings revealed that adult children experienced lower care-giver burden when the informal care-giving network size was larger, when more types of tasks were shared across the network, when care was shared for a longer period, and when the adult child had no disagreements with the other members of the network. The authors concluded that being in an informal care-giving network will be of increasing benefit for adult children involved in long-term care. More care-givers will turn into managers of care, as they increasingly have to organise the sharing of care among informal helpers and mediate disagreements among members of the network.
Group living homes for older people with dementia: the effects on psychological distress of informal caregivers
- Authors:
- te BOEKHORST Selma, et al
- Journal article citation:
- Aging and Mental Health, 12(6), November 2008, pp.761-768.
- Publisher:
- Taylor and Francis
The aim of this study was to investigate the effects of group living care for people with dementia on the psychological distress of informal caregivers, compared with regular nursing home care. This study had a quasi-experimental design with two measurements. 67 primary informal caregivers in 19 group living homes and 99 primary informal caregivers in seven regular nursing homes in the Netherlands filled in a questionnaire upon admission (baseline measurement) of their relative and six months later (effect measurement). Linear and logistic regression analyses were performed on three outcomes of psychological distress - psychopathology, caregiving competence and caregiver burden. There were no significant differences in caregiver competence and caregiver burden between informal caregivers of residents in group living homes and those in regular nursing homes, although there was a trend towards less psychopathology in group living homes after adjustment for confounding. Informal caregivers of residents in group living homes do not have less psychological distress than informal caregivers of residents in regular nursing homes. Although there was a trend towards less psychopathology in informal caregivers of group living homes, the amount of symptoms remained very high in both caregiver groups. This means that the psychological well-being of caregivers deserves the continuing attention of health care providers, also after admittance of their relative in a nursing home facility.
The impact of informal caregiving for older adults on the health of various types of caregivers: a systematic review
- Authors:
- BOM Judith, et al
- Journal article citation:
- Gerontologist, 59(5), 2019, p.e629–e642.
- Publisher:
- Oxford University Press
Objective: Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers. Methodology: A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively. Results: The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving. Conclusion: The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving. (Edited publisher abstract)
Dealing with daily challenges in dementia (deal-id study): an experience sampling study to assess caregiver functioning in the flow of daily life
- Authors:
- KNIPPENBERG R.J.M. van, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(9), 2017, pp.949-958.
- Publisher:
- Wiley
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. (Edited publisher abstract)
The effect of integrated emotion-oriented care versus usual care on elderly persons with dementia in the nursing home and on nursing assistants: a randomized clinical trial
- Authors:
- FINNEMA Evelyn, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 20(4), April 2005, pp.330-343.
- Publisher:
- Wiley
The aim was to examine the effect of integrated emotion-oriented care on nursing home residents with dementia and nursing assistants. A multi-site randomized clinical trial with matched groups was performed, and measurements taken at baseline and after seven months. Sixteen psychogeriatric wards in fourteen nursing homes in the Netherlands were examined. One hundred and forty-six elderly residents with the diagnosis dementia of the Alzheimer (DAT) type, mixed DAT and vascular dementia, and dementia syndrome (NAO) and 99 nursing assistants participated. The following measurements were used. Demented elderly: Behaviour and mood related to adaptation to the illness and the institutionalization. Nursing assistants: General health as measured by feelings of stress, stress reactions, feeling of competence and illness. Positive effects in favour of the integrated emotion-oriented care were found in mild to moderately demented residents on two adaptive tasks: maintaining an emotional balance (less anxiety) and preserving a positive self-image (less dissatisfaction). In the trained group of nursing assistants fewer stress reactions were found only in those who perceived improvement in their emotion-oriented care skills after training. Emotion-oriented care is more effective with regard to the emotional adaptation in nursing homes of persons with a mild to moderate dementia. For the severely demented elderly we did not find this surplus value. This outcome is of clinical importance for elderly persons with dementia who are cared for in nursing homes. With respect to the nursing assistants it is concluded that emotion-oriented care has a positive influence on stress reactions in some of them.
Family care of the older elderly: the Netherlands
- Author:
- STEENVOORDEN M
- Publisher:
- European Foundation for the Improvement of Living and Working Conditions
- Publication year:
- 1993
- Pagination:
- 151p., tables, bibliog.
- Place of publication:
- Dublin
Describes the situation of older people and their carers in the Netherlands, and presents some ideas on possible ways of improving the situation of family carers. Looks at socio-demographic data, family structure and looks at the carers themselves and the services available to them. Also looks at three case studies which provide support to the home carer.
Health effects of the relocation of patients with dementia: a scoping review to inform medical and policy decision-making
- Authors:
- RYMAN Frida V M, et al
- Journal article citation:
- Gerontologist, 59(6), 2019, pp.e674-e682.
- Publisher:
- Oxford University Press
Background and Objectives: Research into the relocation (including international relocation) of people with dementia is increasingly important due to the ageing population and latest developments in the international politics (including globalisation and concerns over international migration). There is need for an overview of the health effects of relocation to facilitate and inform decision- and policy-making regarding these relocations. The aim of this literature review was to provide insight into the physical, psychological, and social consequences of varied types of relocations of older adults suffering from dementia. Research Design and Methods: A scoping literature review with a systematic search was performed in PubMed, Web of Science, PsychInfo, JSTOR, and ScienceDirect. The articles dealing with subject of relocation of older adults from 1994 to 2017 were included and analysed. Methodological quality assessment was performed for all articles. Results: Final list included 13 articles. The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioural, and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress. Discussion and Implications: The outcomes of the study suggest definite evidence for the negative effects of relocation of the older adults. This research aims to be used as the support of the legal and medical decisions of relocation of patients with dementia. (Edited publisher abstract)