A general policy program aiming to identify caregivers and their needs for support is much needed.
Background/Aims: Psychosocial intervention has shown positive effects on the caregivers' burden and satisfaction. The aims of this study were to describe the cost and cost-effectiveness of such an intervention. Methods: We analyzed resource use and costs of formal care for 308 persons with dementia and their caregivers' health-related quality of life (HRQoL). Results: The costs of home help services were lower in the subgroup of spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. While the person with dementia lived at home, caregivers in the intervention group reported a higher HRQoL (p < 0.01). After the person with dementia had moved to a nursing home, spouses in the control group had a lower HRQoL (p < 0.001). Conclusion: The result can be interpreted as a positive effect of the intervention focusing on the identified specific needs of the family caregivers.
Background Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads’ needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost‐effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. Methods In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. Discussion The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Conclusion Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.
BackgroundDifferent kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population.AimThe main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses.MethodsA group of elderly recipients of informal care (n = 343) from the general population study ‘Good Aging in Skåne’ (GÅS) Sweden, were divided into five diagnostic groups: dementia (n = 90), heart and lung diseases (n = 48), stroke (n = 62), fractures (n = 66), depression (n = 40) and the group “other”, consisting of different diagnoses (n = 37) according to ICD-10. Differences in burden were analyzed using the Caregiver Burden Scale (CBS), a 22-item scale consisting of five dimensions: general strain, isolation, disappointment, emotional involvement and environmental burden. A total burden index comprises the mean of all the 22 items and a higher score indicates a higher burden.ResultsThe most common diagnosis associated to caregiving was dementia and fracture and the median hours weekly for informal support with instrumental ADL for the five diagnostic groups ranged from 7 to 45 h for spouses and from 4 to 7 h for parents. The highest proportion of caregivers scoring high total burden was seen among recipients with dementia (50%) and depression (38%); the OR for high total burden for the dementia group was 4.26 (2.29–7.92) and depression group 2.38 (1.08–5.24) adjusted for covariates like age, gender and ADL and these two groups had higher self-perception of burden in all the dimensions, especially the dimension’s emotional burden and strain.ConclusionInformal support constitutes a substantial time for instrumental ADL for the diseased elders. Caregivers to persons with dementia and depression experience high burden.
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