A Qualitative Literature Search and Pilot Study of Online Support Groups for Patients With Dementia and Their Carers

Abstract

The ever-growing group of people living with dementia (PLWD) and their relatives face great challenges. The Covid 19 pandemic has once again placed a particular challenge on this vulnerable group. What started a decade earlier with telephone-based support groups experienced a real push during the pandemic in the form of video-based self-help services. The aim of this qualitative literature search in MEDLINE, EMBASE, CINAHL, and PsycINFO with keywords related to online, support group, caregiver, and dementia was to collect the reported experiences by the end of 2022. Peer reviewed journal papers were included when published and written in English. After the joint decision of two reviewers, it was decided to only include studies that were published in Medline. The results of the literature search are compared with experiences of the participants in a presentation group that was transformed into an online group at the time of the COVID-19 pandemic via Zoom. In search yielded a total of 129 articles. 113 articles described different types of interventions, 30 of which had a randomized design. The qualitative literature search showed on the one hand a high interest in online support groups but on the other hand that the effectiveness and efficacy in randomized trials is much less clear. In addition, we investigated the assessments and experiences of the participants in a presentation group that was transformed into an online group at the time of the COVID-19 pandemic via Zoom. This study demonstrates that PLWD and carers on virtual group meetings can express significant emotive capacity and enhanced connectivity with one another despite a diagnosis of mild to moderate dementia. Further research on entry criteria, concerns about online support services in general and necessary support for use is essential to develop the time- and location-independent possibility of video-based online self-help into an important form of support for both PLWD and their caregivers as an additional support option independent of exceptional pandemic situations.