ABSTRACT
BACKGROUND: In response to the COVID-19 pandemic, the Alzheimer's Disease Research Center (ADRC) at the Icahn School of Medicine at Mount Sinai began conducting evaluations for the National Alzheimer's Coordinating Center Uniform Data Set (NACC UDS) by telephone in March 2020. The ADRC designed a survey to evaluate participant and research coordinator satisfaction with telephone evaluations. METHOD: Following UDS evaluations, participants rated their satisfaction on 5 items: voice quality on telephone, respect for privacy, degree of comfort using the telephone, and confidence that the information collected was accurate. Coordinators were asked to gauge their satisfaction on similar items. To calculate satisfaction scores, responses were assigned values: "Very" = 3, "Fairly" = 2, and "Not at all" = 1. Maximum satisfaction score was 15 for participants and 18 for coordinators. RESULT: Data was available for 130 participants evaluated by telephone between March 2020 and January 2021. Of these, 68.5% were female, 53.7% were white, with an average age of 76.4 and 16 years of education. 74% of participants had a Global Clinical Dementia Rating (CDR) score of 0;22% CDR 0.5;4% CDR 1. Participants with CDR >1 were evaluated by caregiver interviews without testing, and those with CDR=1 were offered testing at the discretion of their family and examiners. Average total satisfaction rating was 14.2/15 for participants and 16.8/18 for coordinators. 98% of participants felt their privacy was "very" respected (mean 2.98/3). When looking at global CDR scores, 89.6% of participants with CDR=0 and 88.2% with CDR ≥0.5 were "very" confident in the accuracy of the information collected. In contrast, coordinators were "very" confident in the accuracy of their evaluation 84.4% of the time when participants had a CDR=0 and 67.7% of the time when participants had a CDR ≥0.5. CONCLUSION: Overall satisfaction with telephone evaluations was high, but participant and coordinator confidence in the accuracy of assessments varied, with coordinator satisfaction lower for more cognitively impaired participants. Future work will analyze satisfaction with ongoing remote assessments and evaluate the impact of additional demographic and diagnostic variables. © 2021 the Alzheimer's Association.
ABSTRACT
Background: Caregivers of persons with Alzheimer's Disease and Other Dementias are a population in need of support as they are vulnerable to emotional, physical, and mental exhaustion associated with caregiver burnout. While CDC guidelines state that social distancing is the greatest protective factor, it can already exacerbate feelings of isolation and stress. Technology offers the opportunity to maximize socialization and access to healthcare;however, research shows that digital platforms are most underutilized by older and lower socioeconomic patients. Objective: This report describes the transition of a weekly caregiver support group from telephone to video conferencing to improve connectedness during a period of social isolation. Method: In 2020, the caregiver support group met weekly over the phone. At each session, there were increased discussions of moving the telephone support group to a video platform. A focused discussion about technology platforms was held to gain an understanding of caregiver attitudes and thoughts regarding technology in which caregivers worried that a video platform would be intrusive and invasive. In June 2020, unreliable phone service resulted in the group transitioning to video. Results: The caregiver group consisted of 5 active members, 2 African American, 2 Asian, and 1 Caucasian. Initial problems included connectivity issues, needing to switch to multiple devices, and assistance with troubleshooting and utilizing the platform. However, caregivers reported feeling that the transition to video was the most natural next step and assisted with reducing feelings of isolation, anxiety, and fear they reported as a result of social distancing due to COVID-19. Caregivers reported feeling connected and because they knew each other so intimately, no longer felt video was intrusive. Conclusions: For older populations who are not familiar with technology, it is important to take steps before beginning a new platform service. This allows for a natural progression to unfamiliar technology. The video platform provided an opportunity for caregivers to be together while apart, which is important for mental health and decreasing caregiver burden.