RESUMEN
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.
RESUMEN
OBJECTIVES: COVID-19 negatively affected older adults' well-being and quality of life, particularly individuals with dementia. My Life, My Story (MLMS) was developed at Veterans Health Administration as an opportunity for Veterans to interact and share life stories using guided interviews. This paper describes a program evaluation of MLMS delivered to Veterans with cognitive concerns and their caregivers using telehealth technology during COVID-19. METHODS: Fourteen Veteran-caregiver dyads completed MLMS interviews with occupational therapy trainees using telehealth technology. Most (10 of 14) participating Veterans had mild-to-moderate dementia. Trainees ascertained Veteran and caregiver demographics such as age and recent cognitive evaluation scores via chart review. Trainees also gathered Veteran-caregiver technology and interview experience through post-interview program evaluation questionnaires. RESULTS: Dyads reported generally positive interview and technological experience, despite technological glitches occurring in most (approximately 70%) interviews. Caregivers assisted with videoconferencing setup and participated in ten interviews. CONCLUSIONS: Veterans with cognitive concerns successfully participated in virtual MLMS interviews during COVID-19. Caregivers enhanced Veteran engagement and often provided technological support. CLINICAL IMPLICATIONS: Telehealth technology enabled participation in My Life, My Story by individuals with cognitive concerns and their caregivers. Post pandemic, clinicians may consider integrating telehealth technology with patients facing access challenges.
