Background: For the 5 million persons living with dementia (PLWD) in the USA, telemedicine may improve access to specialty care from their homes.
Objective: To elicit informal caregiver perceptions of tele-dementia care provided during COVID-19.
Design: Qualitative, observational study using grounded theory.
Participants: Informal caregivers aged 18 + who cared for an older adult who received tele-dementia services at two major VA healthcare systems participated in 30-60-min semi-structured telephone interviews.
Interventions: Interviews were designed using Fortney's Access to Care model.
Main measures: Thirty caregivers (mean age = 67, SD = 12, 87% women) were interviewed.
Key results: Five major themes were (1) Tele-dementia care avoids routine disruption and pre-visit stress; (2) Transportation barriers to in-person visits include not only travel logistics but navigating the sequelae of dementia and comorbid medical conditions. These include cognitive, behavioral, physical, and emotional challenges such as balance issues, incontinence, and agitation in traffic; (3) Tele-dementia care saves time and money and improves access to specialists; (4) Tele-dementia facilitated communication between caregiver and provider without hindering communication between PLWD and provider; and (5) Caregivers described ideal future dementia care as a combination of virtual and in-person modalities with in-home help, financial and medical support, and dementia-sensitive caregiver access. Caregivers interviewed saved 2.6 h ± 1.5 h (range: 0.5 to 6 h) of travel time. Multiple caregivers described disruption of routines as difficult in PLWD and appreciated the limited preparation and immediate return to routine post telemedicine visit as positives.
Conclusions: Caregivers found tele-dementia care convenient, comfortable, stress reducing, timesaving, and highly satisfactory. Caregivers would prefer a combination of in-person and telemedicine visits, with an opportunity to communicate with providers privately. This intervention prioritizes care for older Veterans with dementia who have high care needs and are at higher risk for hospitalization than their same age counterparts without dementia.
Keywords: Dementia; Informal caregiving; Telemedicine.
© 2023. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.