Development and validation of a simple screening tool for caregiver grief in dementia caregiving

Tau Ming Liew,Bee Choo Tai,Philip Yap,Gerald Choon-Huat Koh

doi:10.1186/s12877-019-1070-x

Abstract

BackgroundLoss and grief are experienced by caregivers of persons with dementia (PWD), relating to the ambiguous loss of PWD even when they are still alive and the anticipation of future loss related to their physical death. Such experience of caregiver grief is not easily recognized in clinical practice, despite its association with adverse effects such as caregiver burden, caregiver depression and caregivers’ desire to place the PWD in nursing homes. We constructed a simple screening tool – based on factors associated with caregiver grief – to identify caregivers with high grief.MethodsSpouses or children of community-dwelling PWD (n = 403) completed self-administered questionnaires containing a well-established grief scale and information related to the caregiver and PWD. We split the study sample into two – the derivation sample (n = 300) was used to identify factors associated with grief (using logistic regression) and derive a simple tool based on the number of identified factors; the validation sample (n = 103) evaluated the performance of the tool using the receiver-operating-characteristic-curve-analysis (ROC).ResultsFour key factors were identified by the multivariable regression – more severe dementia (odds ratio, OR 6.9), behavioral problems in PWD (OR 5.0), spousal caregivers (OR 6.0) and daily caregiving (OR 3.0). The screening tool (based on the number of key factors) had an area under ROC of 0.77. At the optimal cut-off of ≥2 key factors, the tool had a sensitivity of 0.91 and a specificity of 0.42.ConclusionsThe identified factors are consistent with current understanding on caregiver grief. They can be easily integrated into the workflow of routine services to screen for caregivers who are more likely to benefit from further grief-related assessment.

Highlights

Loss and grief are experienced by caregivers of persons with dementia (PWD), relating to the ambiguous loss of PWD even when they are still alive and the anticipation of future loss related to their physical death
Four variables remained significant in the multivariable regression, namely, stage of dementia, severe behavioral problems in PWD, spousal caregivers and caregivers who provide daily care
Using the four key factors identified from multivariable regression, we evaluated whether a simple screening tool – based on the number of key factors alone – was adequate to detect caregivers with high grief

Summary

Introduction

Loss and grief are experienced by caregivers of persons with dementia (PWD), relating to the ambiguous loss of PWD even when they are still alive and the anticipation of future loss related to their physical death Such experience of caregiver grief is not recognized in clinical practice, despite its association with adverse effects such as caregiver burden, caregiver depression and caregivers’ desire to place the PWD in nursing homes. The PWD, despite being physically present, becomes increasingly disconnected from the caregiver with worsening of cognitive decline [1] This ambiguous loss, as well as the anticipation of future loss related to the physical death of PWD, engender the experience of loss and grief in caregivers in the pre-death context ( referred to as ‘caregiver grief’) [1]. In a most recent longitudinal study [8], it has been shown to predict caregiver depression after 2.5 years, independent of the well-established effect of caregiver burden

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