Developing a culturally appropriate education program for caregivers and families of persons with dementia in India using the modified Delphi technique.

Abstract

Adoption of rehabilitative interventions for dementia care is limited in India and is attributed to a poor understanding of dementia among caregivers. Conventional interventions target the primary caregiver and overlook the broader family unit. The study aimed to develop an education program for caregivers and families of persons with dementia. A focused literature review informed the preliminary draft of the program. Fourteen panelists participated in the modified Delphi that included semi-structured interviews in Round 1 and survey questionnaires in subsequent rounds. The preliminary program was based on available literature from developed countries with individualistic cultures. In Round 1, panelists raised concerns that the program's instructional content, high reading demands and didactic approach may not be suitable for India's diverse family systems, collectivistic values and resource constrained settings. The program was modified by incorporating case vignettes representing different culturally appropriate care scenarios and family living arrangements. The delivery was modified to be more personalized, interactive and conversational with activities and guided practice tasks. In Round 2, consensus was achieved (S-CVI/Ave = 0.96) for the modified program. The developed culturally appropriate family-centered education program may be a meaningful, feasible, and promising approach to support dementia rehabilitation.