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

Abstract

AbstractBackgroundAlmost two‐thirds of people with dementia (PwD) living at home receive care from informal caregivers. The caregiver’s work load can be comparable or above a full‐time employment. Evidence shows that family caregivers have a higher risk for psychiatric and non‐psychiatric diseases compared to non‐caregivers. A dyadic approach on disease management can help to reduce the burden of care and increase the quality of life (QoL) of caregivers and PwD.MethodsThe cluster randomized controlled trial “Gesund Angehörige Pflegen” (GAIN; ClinicalTrials.gov Identifier NCT04037501) conducted in general practitioner (GP) practices and memory clinics in Northern Germany aimed to evaluate the effectiveness of a 6‐months digitally supported care management program delivered by specifically qualified study nurses to reduce unmet needs of informal caregivers of PwD. Primary outcomes were the number of self‐reported unmet needs, regarding the caregiver and the PwD, assessed with a modified version of the Camberwell Assessment of Need for the Elderly (CANE) and the health‐related quality of life with the EQ‐5D‐5L questionnaire. A generalized linear mixed effects model was used with intercept as random effect.ResultsThe recruitment for the GAIN trial (October 2020 to January 2022) yielded n = 192 participants (mean age: 65 years, women 75%). The number of identified unmet needs was on average 8.66 (range 1 – 30). Analyses of the primary endpoints revealed a statistically significantly higher reduction of unmet needs of caregivers in the intervention group compared to the control group. Evaluation of the EQ‐5D‐5L showed no significant difference between groups.ConclusionThe GAIN care management program was able to lower the number of unmet needs for informal dementia caregivers. Health related quality of life showed a major ceiling effect (high scoring at baseline), which might explain the lack of an effect. The study shows the benefit of a computerized self‐assessment system in primary care and should be further developed as an entry point to the existing health care system.