Digital resilience monitoring of informal caregivers of persons with dementia for early detection of overburden: Development and pilot testing

Abstract

Informal caregiving is becoming increasingly important in dementia care, but causes a considerable burden on caregivers which impacts their wellbeing. We aimed to develop and pilot test a digital monitoring tool (REsilience Monitor for INformal caregivers in Dementia [REMIND]) for wellbeing and resilience of informal caregivers to provide timely support and thereby prevent their overburden and eventually crises admissions of persons with dementia. A human-centered design method based on co-creation with informal caregivers and professionals was used to design REMIND. During co-creation meetings and in-between sprint sessions, a point of focus was formulated, and a prototype was created. Case manager-caregiver duos pilot-tested REMIND for 3months. Semi-structured interviews were conducted to determine usability and acceptability. Thematic analysis was applied to the transcripts. Informal caregivers and professionals with varying backgrounds participated in three co-creation meetings. Defined point of focus was to develop a tool that is able to provide insight into the experienced burden of informal caregivers. The REMIND prototype consisted of weekly questions about wellbeing and resilience for informal caregivers and a dashboard with answers for case managers. Eight case managers and 13 informal caregivers considered REMIND easy-to-use. Informal caregivers mentioned that REMIND stimulated self-reflection. Case managers appreciated the tool's ability to gain insight in the actual wellbeing of informal caregivers. The REMIND tool developed in co-creation with end-users potentially increases insight in actual wellbeing of informal caregivers for both caregivers and case managers. A long-term (controlled) follow-up study is needed to evaluate REMIND's impact on caregiver burden and crisis admissions.