Predicting informal dementia caregivers' desire to institutionalize through mining data from an eHealth platform.

Abstract

Background: Dementia is a leading factor in the institutionalization of older adults. Informal caregivers' desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers' DI by mining data from an eHealth platform in a high-prevalence dementia country.

Methods: Cross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions.

Results: Caregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers' perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1-2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86).

Conclusions: This study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing.