Effectiveness of a digitally supported care management program for family and other informal dementia caregivers: baseline data from the GAIN randomized controlled trial

Abstract

AbstractBackgroundAlmost two‐thirds of people with dementia (PwD) living at home receive care from a family or other informal caregiver. For the caregiver this can result in a work load comparable or above a full‐time employment position. Evidence shows that family caregivers have a higher risk for psychiatric and non‐psychiatric diseases like depression, anxiety, and arterial hypertension compared to non‐caregivers. A dyadic approach on disease management and the assessment of unmet needs can help to reduce the burden of care and increase the quality of life of caregivers and PwD. The cluster randomized “Gesund Angehörige Pflegen” (GAIN) trial conducted in general practitioner (GP) practices and memory clinics in Northern Germany aims to evaluate the effectiveness of a digitally supported care management programme to reduce unmet needs of informal caregivers of PwD.MethodThe recruitment for the GAIN trial began in October 2020 and will end in January 2022 with an estimated sample size of n = 200 caregiver. The GAIN baseline assesses the caregiver’s self‐reported unmet needs (Camberwell Assessment of Need for the Elderly, CANE), health‐related quality of life (EQ‐5D‐5L), caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non‐medical services and resource utilisation.ResultA blinded interims data quality control analysis (n = 86) documented 10.45 unmet needs on average, 4.55 unmet needs for the caregivers and 5.9 unmet needs connected to the PwD triggering a maxium of 8 suggested interventions per unmet need. These results are higher compared to the previous studies on unmet needs of dementia caregivers. The recruitment for the trial is currently still ongoing. Complete baseline results will be presented at the conference.ConclusionThe use of a tablet‐based expert assessment system in memory clinics or GP praxis to identify unmet needs is well feasible. Caregivers of PwD recruited at GPs or memory clinics for the GAIN trial report a high number of unmet needs indicating the importance of a structured and in‐depth assessment to allow a personalized and dyadic treatment of family caregivers and PwD.