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

BACKGROUND: 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 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. METHODS: Spouses 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). RESULTS: Four 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. CONCLUSIONS: The 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12877-019-1070-x) contains supplementary material, which is available to authorized users.