Preparing for implementing “iSupport” in Tunisia: Experience and needs of caregivers of persons with dementia

Abstract

Context:Caregivers of persons with Alzheimer’s disease or related dementia (ADRD) are essential for a better quality of life of those they care for. Their role can have a severe impact on their own physical and mental health, as well as on their social and financial situation, according to the current literature. For this reason, WHO has provided the iSupport tool to provide support to caregivers of people with ADRD. Its adaptation and implementation in Tunisia is challenged by the lack of Tunisian data concerning the experience and needs of this population.Objectives:To explore, in cooperation with the WHO, the experience of caregivers of persons with ADRD in Tunisia, and their potential training and support needs.Methods:A qualitative cross-sectional study using individual semi-directive interviews was conducted with caregivers of persons with ADRD in Tunisia. Interviews were recorded and transcribed. A thematic analysis of the interviews was performed by two researchers.Results:Fifteen caregivers (11 women and 4 men) were interviewed on-site, or by telephone. Concerning their overall experience of caregiving, several main themes have emerged: The disruption of the relationship with the close relative (including the role switching, or the impossible mourning), the disruption of the relationship with oneself (including the forgetting of oneself, or the revision of priorities) and the disruption of the relationship with the others and the world (including the isolation and the withdrawal into the dyad caregiver - close relative with an ADRD, the lack of time, or the life as an unending daily struggle). When it comes to training and support needs, content and format preferences were identified.Conclusion:This work helped us to adapt iSupport to the specific needs of caregivers in Tunisia. Data concerning their overall experience should provide an opportunity for a better adaptation of the social and policy context.