“An animated socialization without substance:” experiences of persons living with dementia through the COVID-19 pandemic

Abstract

Background Like so many others, persons living with dementia have been greatly impacted by the COVID-19 pandemic. A Stakeholder Advisory Council set a research priority to learn more about the experiences of families living with dementia during COVID-19. Methods This study was conducted using a multi-method design. Online surveys were completed by 27 persons living with dementia to rate the impact of COVID-19 on their health and healthcare. Additionally, interviews (n = 3) and two focus groups were conducted via Zoom with eight participants to explore the experiences of persons living with dementia during COVID-19. Results Most participants in this study reported that COVID-19 had some to extreme impact on their anxiety, feelings of isolation, and quality of life. Focus groups and interviews provided context and increased understanding of the main survey findings, with participants also describing other concerns and how they were coping with all of the challenges that came with COVID-19. Five themes from the qualitative data were health, isolation, feelings about COVID-19, adapting to COVID-19, and self-refection. Discussion Although persons living with dementia described the ways that COVID-19 impacted on their quality of life, they also described strategies for coping. For those persons living with dementia who are able to utilize technology, this study highlights the ongoing need to provide virtual opportunities for socialization and support. These findings also emphasize the need to create safe opportunities for socialization such as small socially distanced activities that may allow persons living with dementia to maintain social connections through the COVID-19 pandemic and throughout the progression of their disease.

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

“…A study found that people who spent most of their time during COVID-19 in the home office and thus in video conferences slipped into a comparison with the “good old days” and that technical problems also led to a certain fatigue. Nevertheless, PLWDs describing that COVID-19 impacted on their quality of life, also used technology for socialization and support ( Glassner et al, 2022 ).…”