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)