Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study

Abstract

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

Associated factors of suicidal ideation among older persons with dementia living at home in eight European countries

“…In another study, caregivers of persons with dementia with suicidal ideation experienced a higher degree of caregiver burden than did caregivers of persons with dementia without suicidal ideation, even after adjusting for BPSD score (Koyama et al, 2015). Experiencing high levels of caregiver burden may also result in poor health-related QoL for the caregiver (Lethin et al, 2018). A systematic review of interventions to prevent suicidal behaviours and reduce suicidal ideation in older people found that primary care or community-based multifaceted intervention programmes may be effective (Okolie, Dennis, Simon Thomas, & John, 2017).…”

Determinants of overburdening among informal carers: A systematic review

“…The influence of dependency level could be explained via an increase in both the intensity of caregiving and amount of caregiving tasks required, leading to higher burden (37, 40). Lethin et al (38) linked ADL dependency in their longitudinal study specifically with increased need for supervision hours in the case of dementia care, providing support for hypothesis 2. Another factor that influenced informal caregiver burden is the specific illness of the patient.…”

“…The three longitudinal studies all found that the duration of caregiving and the patient's functional status were the strongest determinants of burden (37)(38)(39). In every longitudinal study, caregiver burden increased non-linear over time since perceived burden increased at a steeper rate as time progressed.…”

“…This matches with the ASM, where these factors are labelled as general stressors and again confirms the direct effects of behaviour and cognitive capacity on burden as formulated in hypothesis 1. Both the longitudinal studies of Ransmayr et al (39) and Lethin et al (38) and crosssectional studies (36,41,45, 47-48) incorporated patient's behavioural problems such as agitation and aggression in their research and this showed to be positively related to caregiver burden. These factors seem especially relevant in the context of dementia care, where such behavioural problems occur frequently.…”

“…Moreover, these three longitudinal studies as well as six cross-sectional studies considered the patient's functional status in terms of dependency level in activities of daily living (henceforth shortened to ADL) as one of the strongest predictors of perceived caregiver burden (36)(37)(38)(39)(40)(41)(42)(43)(44). This is consistent with the ASM, where ADL dependency is considered a general stressor.…”