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Published online by Cambridge University Press: 02 February 2024
Deinstitutionalization of nursing care in European counties relies profoundly on the mobilization of the caregivers and municipal homecare services. Yet, caring for home-dwelling people with dementia (PwD) can be stressful and resource demanding. The [email protected] trial tailored, implemented, and evaluated the multicomponent LIVE intervention on informal caregivers’ burden in dyads of home-dwelling PwDs and their families.
From 2019 to 2021, we conducted a 24-month multicenter, multicomponent, stepped-wedge randomized control trial including dyads of people ≥65 years with mild to moderate dementia with minimum 1h/week contact with their informal caregiver. The user-developed Learning, Innovation, Volunteer support, and Empowerment (LIVE) intervention was implemented by municipal coordinators over 6 months periods. In an intention-to-treat analysis, we applied mixed-effect regression models accounting for time and confounding factors to evaluate the effect of the intervention on Relative Stress Scale (RSS), Resource Utilization in Dementia (RUD) and Clinical Global Impression of Change (CGIC).
A total of 280 dyads were included at baseline, mean age of PwD was 82.2 years, 63% female, 43% lived alone, 36% had Alzheimer’s dementia, median MMSE was 20 (range 0-30) and median FAST score 4 (range 1-7). Caregivers were on average 66 years, 64% female, 49% were the PwDs child. At baseline, 80 dyads were randomized to intervention sequence 1 of which 67 received the intervention, corresponding numbers for sequence 2 and 3 were 97/ 57 and 103/50. During the active intervention period, time spent in personal activities of daily living significantly increased with 2.8 hours/months compared to 1.2 hours/months increase in the control period, total score of RSS was stable in the intervention period (0.36 points) (range 0-60), while it increased significantly in the control period (27.0 points), CGIG increased significantly only in the intervention period (0.5 points) (range: -5 worsening, 5 improvement).
Although caregivers reported more care time during the intervention periods, they did not experience more stress which may be related to their increased understanding of dementia. Increase in reported care time might also reflect the increased understanding of dementia, leading to more realistic evaluation of own time contribution.
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