Pandemic caregiving: Results from a survey of Alzheimer’s disease research center study partners

• DOI: 10.1002/alz.061955
• Publication Date: 2023-06-16T09:45:21Z
• Authors: Margaret Sewell; Judith A. Neugroschl; Sinead McSpedon; Gila Weinrib; Jessica Woodhead; Maria Loizos; Carolyn W Zhu; Mary Sano
• Keywords: 03 medical and health sciences; 0302 clinical medicine; 16. Peace & justice; 3. Good health

AbstractBackgroundCaregivers are at increased risk for psychological distress and social isolation. The COVID‐19 pandemic presents extra challenges for caregivers of research participants.MethodUsing NACC’s caregiver COVID survey as a model, we developed a 25‐item questionnaire with Likert‐type questions concerning the pandemic’s impact on caregiving, the emotional/cognitive health of the research participant, and willingness to participate in research. Data was collected in summer 2021, with responses focused on 3/2020‐3/2021. ADRC participants with CDR ≥ 1 and their caregivers were identified. Data was previously collected on 267 participants with CDR 0‐0.5.Result32 caregivers of research participants (50% adult children, 41% spouses, 9% other) completed the survey (15‐75 minutes). Participants were 59% female (mean age 80 and education 15y). 66% non‐Hispanic White, 13% non‐Hispanic Black, 19% Hispanic. Mean CDR SOB was 12±5. Demographics on the 267 normal/MCI participants not shown.Caregivers (55%) felt “some‐extremely” isolated compared to 39% of CDR 0‐0.5 participants; mean caregiver isolation scores were 3.4/5 and 2.5/5 for those who cared for participants with CDR = 3 and 1‐2, respectively. Caregivers (91%) and participants (56%) found the pandemic “some‐extremely” disruptive; mean caregiver disruption scores were 4/5, 3.6/5 and 3.8/5 for those who cared for participants with CDR = 3, 2 and 1, respectively. Caregivers (63%) said that vaccination “very‐extremely” reduced caregiving stress. 41% endorsed “a lot” as to how challenging it was to ensure participants complied with COVID safety precautions. 47% felt that COVID “moderately‐severely” impacted the participant’s cognition. Caregivers’ biggest barriers were lack of access to day programs (31%), decreased support from family/friends (31%), and lack of in‐person medical care (25%). 42% of caregivers were “somewhat‐extremely” uncomfortable with in‐person research. Caregivers (63%) said that going forward, flexibility of in‐person vs. remote evaluations was “very‐extremely” important.ConclusionThis diverse group of caregivers reported more isolation and disruption than CN/MCI participants, particularly with participants with CDR’s of 2‐3. Caregivers also expressed continued desire to participate in research. Research centers should be mindful of the impact of isolation, loss and stress (e.g. helping loved ones with cognitive impairment manage safety protocols). Increased social work services and prioritizing flexibility (e.g. telehealth) is key.