Self-reported burden of caregiver of adults with depression: a cross-sectional study in five Western European countries

Abstract

Background: Caregiving in depression imposes a complex health and economic burden. Moreover, there is a paucity of studies examining the impact of caregiving for adult relatives with unipolar depression (CG-UD). This study assessed the burden among CG-UD in five western European (EUR5) countries (France, Germany, Italy, Spain and the United Kingdom) compared with caregivers of adults with other chronic comorbidities (CG-OD) and general non-caregiving (non-CG) population.

Methods: A retrospective observational study was conducted using the 2016 National Health and Wellness Survey (NHWS) in EUR5. Differences in humanistic burden (health status and health-related quality of life [HRQoL]) and economic burden (work productivity and activity impairments, health care resource utilization [HRU]) were assessed between CG-UD and CG-OD respondents. Caregiver-specific burden (caregiving responsibilities and caregiver reaction assessment [CRA]) was assessed between caregiver groups. Generalized linear models were used to compare between the groups on the outcomes after adjusting for potential confounders.

Results: Of the 77,418 survey respondents examined, 1380 identified as CG-UD, 6470 as CG-OD and 69,334 as non-CG. Compared to CG-OD and non-CG, CG-UD, reported significantly lower health status (e.g., EuroQoL-5 Dimensions-5 Levels [EQ-5D-5L]: CG-UD = 0.63, CG-OD = 0.67, and non-CG = 0.73, p < 0.001) and HRQoL (e.g., mental component score: CG-UD = 35.0, CG-OD = 37.8, and non-CG = 40.7, p < 0.001). Although effect sizes were small (d < 0.2), minimal clinically important differences (MCID) were apparent for HRQoL and health status. Increased economic-related burden was observed for work and activity impairment (e.g., absenteeism: CG-UD = 32.6%, CG-OD = 26.5%, and non-CG = 14.8%, p < 0.001) and HRU (e.g., healthcare provider [HCP; mean, past 6 months]: CG-UD = 10.5, CG-OD = 8.6, and non-CG = 6.8, p < 0.001). Caregiving-specific burden was associated with experiencing a greater lack of family support (CG-UD: 2.9 vs CG-OD: 2.8, p < 0.01), impact on finances (CG-UD: 3.0 vs CG-OD: 2.9, p = 0.036), and on the caregiver's schedule (CG-UD: 3.1 vs CG-OD: 3.0, p = 0.048).

Conclusion: Caregivers of persons with chronic disease experience an excess humanistic and economic burden compared to the general population, with a greater burden confronting caregiver for adults with depression. These findings illustrate the far-reaching burden of depression on both the patient and the relatives who care for them.

Keywords: Caregiver; Caregiver reaction assessment; Depression; Health status; Health-related quality of life; Healthcare resource utilization; Work productivity and activity impairment.

Fig. 1

Study population for NHWS survey

Fig. 2

Health status measured using SF-6D and EQ-5D-5L among CG-UD, CG-OD and non-CG groups. Note: CG-OD caregivers of adult relatives with other chronic conditions; CG-UD caregivers of adult relatives with unipolar depression; EQ-5D EuroQoL-5 Dimensions 5-level version; SF-6D Medical Outcomes Study Short-Form version 2 6 Dimensions. Linear mixed models with gaussian distribution were used for analysis. Models adjusted for age, sex, marital status, employment, number of children in household, alcohol use, BMI, education, smoking status, exercise in past 30 days, and CCI

Fig. 3

HRQoL outcomes among CG-UD, CG-OD and non-CG groups. Note: CG-OD caregivers of adult relatives with other chronic conditions; CG-UD caregivers of adult relatives with unipolar depression; CI confidence intervals; HRQoL health-related quality of life; MCS Mental Component Score; PCS Physical Component Score; SD standard deviation. Linear mixed models with gaussian distribution were used for analysis. Models adjusted for age, sex, marital status, employment, number of children in household, alcohol use, BMI, education, smoking status, exercise in past 30 days, and CCI

Fig. 4

Work productivity and activity impairment among CG-UD, CG-OD and non-CG groups. Note: CG-OD caregivers of adult relatives with other chronic conditions; CG-UD caregivers of adult relatives with unipolar depression. Generalized linear mixed models with negative binomial distribution were used for analysis. Models adjusted for age, sex, marital status, number of children in household, alcohol use, BMI, smoking status, and CCI. Models for absenteeism and activity impairment also adjusted for education and exercise in past 30 days

Fig. 5

Healthcare resource use among CG-UD, CG-OD and non-CG groups in the past 6 Months. Note: CG-OD caregivers of adult relatives with other chronic conditions; CG-UD caregivers of adult relatives with unipolar depression. Generalized linear mixed models with negative binomial distribution were used for analysis. Models adjusted for age, sex, marital status, number of children in household, alcohol use, BMI, smoking status, and CCI. Models for healthcare provider visits also adjusted for education and exercise in past 30 days

Fig. 6

Caregiver Involvement between CG-UD and CG-OD groups. Note: CG-OD caregivers of adult relatives with other chronic conditions; CG-UD caregivers of adult relatives with unipolar depression. Logistic regression models with binomial distribution were used; for caregiver involvement (adjusted for: bathing/grooming - age, sex, marital status, employment, number of children in house, alcohol use, smoking status, exercise in past 30 days, CCI; transportation, meals, etc. - age, sex, marital status, employment, number of children in house, alcohol use; treatment decisions - age, sex, marital status, employment, number of children in household, alcohol use, education, exercise in past 30 days, CCI; managing finances - age, sex, marital status, employment, number of children in household, alcohol use, BMI, exercise in past 30 days). Caregiver-specific questions were reported among a subsample of respondents selected using a probability sampling method. Respondents in each group represent 30.1% (416/1380) CG-UD respondents and 32.9% (2128/6470) CG-OD respondents

Fig. 7

Caregiver Reaction Assessment between CG-UD and CG-OD groups. Note: CG-OD caregivers of adult relatives with other chronic conditions; CG-UD caregivers of adult relatives with unipolar depression. Linear mixed models with gaussian distribution were used for analysis. Models adjusted for age, sex, marital status, number of children in household, alcohol use, and exercise in past 30 days. Models for esteem including smoking status; for impact on finance included BMI and smoking status, and for impact on schedule included CCI. Caregiver-specific questions were reported among a subsample of respondents selected using a probability sampling method. Respondents in each group represent 30.1% (416/1380) CG-UD respondents and 32.9% (2128/6470) CG-OD respondents