“Welcome to Our World”: Experiences of Persons Living with Dementia Prior to and During the COVID-19 Pandemic

Abstract

People diagnosed with dementia are experts on living with the disease, yet their perspectives are often overlooked in research and practice. The pandemic has amplified health inequities among older adults, but the impact of the pandemic on the lived experience of people living with dementia remains unclear. This qualitative study used a series of 2 virtual focus groups with people living with dementia (N = 7) to explore challenging situations and emotions experienced by community-dwelling people living with dementia prior to and during the pandemic. Focus group transcripts were analyzed using narrative thematic analysis with themes finalized through consensus among a 3-member coding team. Two themes with corresponding subthemes emerged: humanizing dementia (subthemes: early experiences with cognitive impairment, health care experiences, overstimulation, activism, tools to live well with dementia) and “welcome to our world” (subthemes: loss, stress, health impacts). Participants faced challenges prior to and during the pandemic that impeded their ability to live well with the disease. In the midst of the disruption of the pandemic, society saw a glimpse of what it was like to live with dementia due to restrictions that limited access to supports, resources, routines, and socialization. Despite significant barriers, people living with dementia identified many strategies to humanize their experience including the use of humor, activism, and social support. Insights of people living with dementia in this study can be used to inspire a shift in the narrative of dementia as a disability to one of strength, ability, and living well.