Abstract
BACKGROUND: Minimal research has leveraged qualitative data methods to gain a better understanding of the experiences and needs of older adults (OAs) and care partners of OAs with and without Alzheimer's Disease (AD) and AD-related dementias (AD/ADRD) during the first surge of the COVID-19 pandemic. In this study, we: 1) quantitatively evaluated the psychosocial health of community-dwelling OAs; 2) quantitatively evaluated the perceived stress of care partners for OAs; 3) qualitatively characterized the experiences and needs of community-dwelling OAs and their care partners; and 4) explored differences in the experiences of care partners of OAs with and without AD/ADRD during the first surge of the COVID-19 pandemic in the New York metropolitan area. METHODS: In this mixed-methods study, telephone interviews were conducted with 26 OAs and 29 care partners (16 of whom cared for OAs with AD/ADRD) from April to July 2020. Quantitative data included: demographics; clinical characteristics (Katz Index of independence in activities of daily living (Katz ADL) and the Lawton-Brody instrumental activities of daily living scale (Lawton-Brody)); and psychosocial health: stress was assessed via the Perceived Stress Scale (PSS), social isolation via the Lubben Social Network Scale (LSNS), loneliness via the DeJong Loneliness Scale (DeJong), and depression and anxiety via the Patient Health Questionnaire-Anxiety and Depression (PHQ). Qualitative questions focused on uncovering the experiences and needs of OAs and their care partners. RESULTS: OAs (N = 26) were mostly female (57.7%), and White (76.9%), average age of 81.42 years. While OAs were independent (M = 5.60, Katz ADL) and highly functional (M = 6.92, Lawton-Brody), and expressed low levels of loneliness, stress, depression and anxiety (M = 1.95 on DeJong; M = 12.67 on PSS; M = 1.05 on PHQ depression; and M = 1.09 on PHQ anxiety), open-ended questions elicited themes of fear and worry. Care partners (N = 29) were mostly female (75.9%), White (72.4%), and married (72.4%), and reported moderate stress (M = 16.52 on the PSS), as well as a psychological impact of the pandemic. CONCLUSIONS: Early in the pandemic, OAs reported minimal stress and loneliness; this may have been related to their reports of frequent interaction with family, even if only virtually. By contrast, care partners were moderately stressed and worried, potentially more than usual due to the additional challenges they face when trying to meet their loved ones' needs during a pandemic.