Telehealth Support for Dementia Caregivers During the COVID-19 Pandemic: Lessons Learned From the NYU Family Support Program.

OBJECTIVES: In response to the needs of dementia caregivers during the COVID-19 pandemic, the NYU Langone Alzheimer's Disease and Related Disorders Family Support Program (FSP) quickly transitioned to providing most services online. To understand how dementia caregivers experienced FSP services after the switch to video telehealth, we conducted qualitative interviews of spouse or partner dementia caregivers. PARTICIPANTS: Ten participants were recruited from a convenience sample of dementia spouse or partner caregivers who used one or more online FSP services offered during the pandemic. DESIGN: Caregivers engaged in semi-structured interviews held via videoconference between May and June 2020. Qualitative analysis of interviews was conducted according to the principles of framework analysis. RESULTS: Caregivers reported high satisfaction with the FSP pre-pandemic and continued to feel supported when services were provided online. They transitioned to video telehealth services with little difficulty. CONCLUSIONS: While video telehealth is frequently cited as beneficial for those in rural communities, socioeconomically disadvantaged groups, or homebound individuals, our findings suggest that video telehealth is also advantageous for dementia caregivers, given their unique barriers, including lack of time due to caregiving responsibilities, lack of respite care for the person with dementia, and the additional burdens of travel time to access in-person services.

Spousal dementia caregivers' use of technology during the COVID-19 global pandemic: Lessons learned from the NYU family support program

Background Daily routines have been drastically impacted by COVID-19, including healthcare appointments, home services, and many recreational opportunities. Spousal dementia caregivers (CGs) are particularly vulnerable during COVID-19, as many rely on family members, daycare, in-home assistance, and other respite opportunities. We conducted qualitative interviews in May/June 2020 to understand the impact of COVID-19 on dementia CGs and how they experienced the switch of all the NYU ADRD Family Support Program (FSP) services to telehealth. Method A total of 10 spousal CGs participated in videoconference interviews about their COVID-19 experiences and the FSP?s transition to the telehealth format. Semi-structured interviews were conducted by one of two interviewers who were external to the FSP to encourage freedom of discussion. All sessions were recorded and transcribed. De-identified transcripts were coded by two independent coders using NVivo, with discrepancies resolved by a third researcher. Result CGs ranged in age from 54 to 86;7 were female, 8 were non-Hispanic White, and 2 were Black. All were New York City residents living with the person with dementia;2 households had additional adult family members. Qualitative analysis revealed several major themes related to COVID-19 experiences: fears surrounding COVID-19 and staying healthy;changes in daily routines;the impact of reduced respite and support services;adaptation to technology that enabled increased contact with family/friends. Feedback about the telehealth adaptation of the FSP included observations about new group dynamics and decreased barriers to involvement due to the ability to participate from home, reducing the need for transportation and other logistics related to traveling. Conclusion Despite significant challenges due to COVID-19, CGs reported benefit and support from the FSP in the new telehealth format. One participant described the FSP as ?indispensable? and expressed how much members relied on each other during COVID-19. In addition, we learned that the telehealth FSP not only served as a source of support during the crisis but that there were perceived advantages to this format, including reductions in barriers to in-person services (finding transportation, travel time, getting respite care for the person with dementia). We recommend continuing the option of telehealth services for dementia CGs after the COVID-19 crisis.

COVID-19 Teleconferencing Experiences of Caregivers & Spouses with Dementia from QA/QI Support Group Study

In summer 2020, researchers conducted a Quality Assurance and Quality Improvement (QA/QI) assessment of the NYU Langone Alzheimer’s Disease and Related Dementias Family Support Program’s adaptations in response to COVID by interviewing 10 participating spouse caregivers of persons with dementia (PWD). The primary adaptations were shifting from in-person to online services, changing support groups from biweekly to weekly, and offering an arts-based group for PWD daily rather than weekly . In the course of these interviews, all respondents described their adaptation to remote teleconferencing programming, and five also contrasted their experiences with those of the PWD. Methods After transcription and de-identification, a codebook was created from the transcript content that included a priori topics of interest as well as emergent themes using framework analysis. These transcripts were then coded by two independent coders through an iterative process and consultation with the codebook creator, who also resolved any discrepancies between coders. Results Respondents reported largely successful transitions to teleconferencing for themselves, though missing the physical contact afforded by meeting in-person. However, they also described some interactional challenges related to participants talking over one another, and suggested more active moderating to facilitate greater turn-taking. The respondents’ descriptions of the PWD’s response suggested a much less successful transition to teleconferencing. Challenges and barriers included lack of interest, difficulty following or participating in conversation, and teleconferencing creating confusion, such making it “hard for her to separate out when everybody's in the same place or not."

COVID-19 Silver Linings - Experience of Spousal Caregivers of Persons with Dementia Engaged in Support Program

Caring for a person with dementia (PWD) has been consistently associated with negative effects on health, including increases in caregiver depression, anxiety, and burden. Emerging studies have shown that the COVID-19 pandemic has increased these factors due to reported increases in caregiver workload and cognitive and behavioral symptoms of the PWD. We interviewed 10 spousal caregivers of PWD from the NYU Langone Alzheimer’s Disease and Related Dementias Family Support Program in Summer 2020 during the COVID-19 pandemic in order to gain feedback about their experiences during the pandemic and the transition from in-person to videoconferencing that could be used to improve services and support. Caregivers discussed the challenges faced during the pandemic but also the unique opportunities the situation presented. We report here on those positive aspects of COVID-19 from the perspective of the caregivers we interviewed. Methods Interviews of caregivers residing with their spouses in the New York City area were conducted via videoconferencing, transcribed, deidentified, and analyzed using framework analysis methods. Results We found that caregivers reported some positive reaction to videoconferencing that included increased support group cohesion, increased convenience, feeling less obligated to participate in events, and new opportunities for social contact. Participants also discussed positive inter-couple relationship changes such as increased quality time spent together. Our findings resonate with a body of literature focused on understanding the positive aspects of caregiving. Understanding the full presentation of the caregiver experience, including both positive and negative aspects, is important for developing interventions and resources for this unique group.