Monitoring informal caregivers to prevent overburden

Informal caregiving is becoming increasingly important in dementia care, but causes a considerable burden on caregivers which impacts their wellbeing. Informal caregivers also find it hard to acknowledge their burden.  If case managers have better insight in the caregivers' burden they can offer the right support at the right time.

Researchers Dorien Oostra, Marieke Perry and Minke Nieuwboer developed and pilot tested 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. The research group, led by Marcel Olde Rikkert published the results in the International Journal of Geriatric Psychiatry on 25 January 2023.

A human-centered design method based on co-creation with informal caregivers and professionals was used to design REMIND. Informal caregivers and professionals with varying backgrounds participated in these 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 has the potential to reduce overburden. A long-term (controlled) follow-up study is needed to evaluate REMIND's impact on caregiver burden and crisis admissions.

Publication 

Oostra DL, Vos WL, Olde Rikkert MGM, Nieuwboer MS, Perry M. Digital resilience monitoring of informal caregivers of persons with dementia for early detection of overburden: Development and pilot testing. Int J Geriatr Psychiatry. 2023 Jan;38(1):e5869. doi: 10.1002/gps.5869. PMID: 36694373.