The association between medical diagnosis and caregiver burden: a cross-sectional study of recipients of informal support and caregivers from the general population study ‘Good Aging in Skåne’, Sweden

Aging Clinical and Experimental Research, Dec 2017

Background Different kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population. Aim The main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses. Methods A 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. Results The 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. Conclusion Informal 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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The association between medical diagnosis and caregiver burden: a cross-sectional study of recipients of informal support and caregivers from the general population study ‘Good Aging in Skåne’, Sweden

The association between medical diagnosis and caregiver burden: a cross-sectional study of recipients of informal support and caregivers from the general population study 'Good Aging in Skåne', Sweden Sölve Elmståhl 0 Beth Dahlrup 0 Henrik Ekström 0 Eva Nordell 0 0 Division of Geriatric Medicine, Department of Clinical Sciences in Malmö, CRC, Skåne University Hospital, Lund University , Jan Waldenströms gata 35, Build. 28 Fl.13, 205 02 Malmo , Sweden 1 Sölve Elmståhl Background Different kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population. Aim The main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses. Methods A 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. Results The 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. Conclusion Informal support constitutes a substantial time for instrumental ADL for the diseased elders. Caregivers to persons with dementia and depression experience high burden. Caregiver burden; Scale; Diagnosis; HRQoL; Informal support; Depression; Dementia Introduction Family and friends take on a huge responsibility for the care of the elderly in ordinary living and the effect of this responsibility on these informal caregivers (hereafter referred to as caregivers) is often described in terms of both burdens and benefits. Previous studies have given us some knowledge on caregivers’ perceived burden and the array of factors associated with burden [1–5]. However, studies describing burden among the caregivers other than those supporting a person with dementia and stroke are relatively few, and cross-disease studies on the caregiver’s burden are limited, and different scales have been used to estimate the caregiver’s burden making comparisons difficult. Studies of caregivers to persons with dementia and their perceived burden are predominant in the literature. Campbell et al. [6] states that caregivers to persons with dementia have a higher level of burden compared to other caregiver groups and they mention different factors associated with high burden, such as confinement in their role as caregiver, a sense of overload, and the relationship quality between care recipient and caregiver. Andrén and Elmståhl [7] and Brodaty et al. [8] state that burden is a strong predictor of strain and distress in caregivers to persons with dementia and has a great impact on the caregivers’ well-being. Ågren et al. [9] studied caregiver burden among partners to patients with chronic heart failure and the diseased persons’ physical and mental health together with decreasing social contacts explained the caregivers’ perceived burden. A review of burden in caregivers to persons with stroke revealed that the prevalence of burden was 25–54% among the caregivers and that the mental health of both care receiver and caregiver and the amount of time spent on caregiving were highly correlated to increased levels of burden [10]. In a comparison between burden among caregiving spouses of persons with depression or persons with dementia, the levels of burden were similar [11]. Inconsistency can be noted between different authors’ views on factors related to caregiver burden. Nevertheless, Schultz and Sherwood [11] argue that caregiving to a person with a chronic and progressive illness “has all the features of a chronic stress experience”. To the best of our knowledge, this is the first cross-disease general population study describing caregiver burden, aiming to examine the association between different medical diagnoses of the care recipient and the caregivers’ perceived burden using the same ass (...truncated)


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Sölve Elmståhl, Beth Dahlrup, Henrik Ekström, Eva Nordell. The association between medical diagnosis and caregiver burden: a cross-sectional study of recipients of informal support and caregivers from the general population study ‘Good Aging in Skåne’, Sweden, Aging Clinical and Experimental Research, 2017, pp. 1-10, DOI: 10.1007/s40520-017-0870-0