Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial

Abstract

Background: Few personalized e-interventions are available for informal and professional caregivers of people with dementia. The DEMentia Digital Interactive Social Chart (DEM-DISC) is an ICT tool to support customized disease management in dementia. The aim of this study was to improve and evaluate DEM-DISC, its user-friendliness and usefulness and to investigate the future implementation.

Methods: A cluster randomized controlled trial (RCT) design was used with measurements at baseline, 6 and 12 months. A total of 73 informal caregivers of people with dementia, supported by 19 randomized case managers participated in the study. In the intervention group, both carers (n = 41) and case managers (n = 13) could access DEM-DISC during twelve months. The control group, 32 carers and 14 case managers, had no access to DEM-DISC. Semi-structured interviews were conducted with ten stakeholders.

Results: Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls. A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls. Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly.

Conclusions: This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced (met) needs of informal carers. This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs. For further implementation of DEM-DISC methods to keep the information updated is of great importance.

Keywords: ICT; dementia; intervention; psychosocial; self-management.