Experience of the healthcare system for caregivers of persons with dementia

BACKGROUND: Persons with dementia are generally older and often have multiple other chronic conditions, necessitating several healthcare visits each year. Most live in the community supported by unpaid family caregivers who often assist with healthcare management. Little is known about caregiver and person with dementia experience engaging with the healthcare system, which may be more complicated in the context of cognitive changes such as memory loss. METHODS: This is a targeted subanalysis of a major code, experience of the healthcare system, which emerged from a qualitative study investigating perspectives of family caregivers (N = 24) of community-dwelling persons with dementia about telemedicine. RESULTS: Caregivers were asked to describe their experiences taking persons with dementia to medical visits. Caregivers’ detailed descriptions of the process resulted in three categories related to their experience of the healthcare system: Preparing for Visits, Visit-Related Time and Travel, and In-Visit Experience. Categories revealed the complexity of dyads’ participation in healthcare both in and around actual clinic visits. Findings also highlighted the often-negative impact of person with dementia cognitive symptoms on various stages of the process, which was partly offset by perceived benefits related to social participation and interactions with care teams. CONCLUSIONS: This study improves our understanding of the experience of engaging with the healthcare system for caregivers and persons with dementia. By explicating the complex factors involved with participating in healthcare visits outside the bounds of clinic walls, this study offers insights for clinicians and systems supporting persons with dementia and caregivers.