REsilience Monitor for INformal Caregivers in Dementia (REMIND): Digital Monitoring of Informal Caregivers Wellbeing to Prevent Crises

Abstract

Societal dependency on informal care for people with dementia will grow. Informal caregiving causes a considerable burden on caregivers, often a direct reason for crisis admission of the person with dementia. Close monitoring the wellbeing of caregivers and early intervening may prevent crisis admissions. Therefore, our aim is to develop a user-friendly application for informal caregivers and a dashboard for case managers to monitor wellbeing and resilience of the caregivers to provide timely support and prevent crises. A human centered design method was used to identify wishes and needs. End users invited to participate were informal caregivers and healthcare professionals from different disciplines. Experts were researchers, clinicians, innovation experts and application designers. Three end user meetings and multiple expert sessions took place. Wishes and needs were identified during the first end user session. During a second meeting functionalities of the application were discussed. It emerged to ask questions frequently to assess deterioration of caregiver’s wellbeing. During a third meeting, concept screens of the application and dashboard were presented and discussed. Questions were reviewed covering the topics: social support, reciprocity, burden/competence, mood, own activities, person with dementia, and small crises. End users indicated they want to fill in approximately seven questions per week. Several challenges will be faced: making the application and dashboard easy to use, useful in practice and tailor-made. This methodological approach will result in a product that best meets the needs and wishes of caregivers and case managers in order to prevent crises.