Study procedures
This study was approved by the Institutional Review Board of Northwell Health and the COVID-19 Research Consortium of the affiliated academic medical center. All interviews were conducted between April 14 and July 22, 2020, which corresponds to the peak and decline of the first surge of the pandemic in the New York metropolitan area. To be eligible, patients had to meet the following criteria: (1) aged 65+ years; (2) seen at the academic geriatric faculty outpatient practice within the last 12 months of study start date; (3) able to access a telephone; and (4) able to speak English. To be eligible to participate as a care partner, individuals had to self-identify as a care partner of an OA, defined as those who assist with instrumental activities of daily living (IADLs, such as managing finances and medication, food preparation, housekeeping, laundry, etc.), and ADLs (e.g., eating, bathing, mobility, etc.).
A research assistant (RA) pre-screened the electronic health record of OA patients coming into the clinic and contacted eligible patients and their care partners via telephone. As care partners were asked to speak more generally about their role, we did not require permission from the OA to speak to their care partner. Interested participants provided informed consent and completed a telephone interview. The process to recruit care partners of persons with AD/ADRD was slightly different. For care partners of persons with AD/ADRD, the care partner was contacted directly and invited to participate; no data was collected from the OA patient with AD/ADRD. Of note, our RA deliberately sought out and recruited care partners of persons with AD/ADRD to meet a pre-specified quota for this group.
Quantitative measures
For patients, the interview consisted of quantitative assessments of demographics and clinical characteristics (i.e., ADLs and IADLs), as well as psychosocial health (perceived stress, social isolation, loneliness, anxiety and depression). For the care partner, the interview consisted of quantitative assessments of demographics and perceived stress (a facet of psychosocial health).
Demographics
We collected OAs’ age, gender (male or female) and race (White, Black/African American, Asian, prefer not to say). We collected care partners’ age, gender (male or female), race (White, Black/African American, Asian, prefer not to say), marital status (married/domestic partnership, single/never married or divorced), relationship to the OA (child, spouse/life partner, private aide, or son-in-law), and whether the OA they care for has AD/ADRD (yes or no).
Clinical: ADLs
Level of independence in ADLs was evaluated with the Katz Index of independence in activities of daily living [13,14,15,16,17] (Katz ADL), which ranges from 0 (severe functional impairment) to 6 (independently functioning).
Clinical: IADLs
IADLs were evaluated with the Lawton-Brody instrumental activities of daily living scale [17, 18] (Lawton-Brody IADL), an instrument measuring independent living skills among 8 domains of functioning. Summary scores for all participants range from 0 (low functioning, dependent) to 8 (high functioning, independent).
Psychosocial Health: perceived stress
Perceived stress was evaluated with the Perceived Stress Scale [19] (PSS), the most widely used psychological instrument for measuring the perception of stress in one’s life. Each item is rated on a 5-point Likert scale ranging from 0 (never) to 4 (very often) for 10 items. High scores indicate greater levels of stress.
Psychosocial Health: social isolation
Social isolation was evaluated with the Lubben Social Network Scale (LSNS), a 6-item self-report measure of social engagement including family and friends [20]. Response options range from “none” to “nine or more”. The scale correlates with mortality, all case hospitalization, health behaviors, depressive symptoms, and overall physical health.
Psychosocial Health: loneliness
Loneliness was measured with the 6-item DeJong Gierveld Loneliness Scale, an evaluation of overall, social and emotional loneliness [21]. Scores range from 0 (least lonely) to 6 (most lonely).
Psychosocial Health: anxiety and depression
Anxiety and depression were assessed with the Patient Health Questionnaire-4 [22] (PHQ-4), a 4-item questionnaire answered on a 4-point Likert scale ranging from “not at all” to “nearly every day”.
Qualitative interviews: experiences and needs
OAs and care partners were asked open-ended questions further evaluating their experiences and needs during the COVID-19 pandemic. The study team, which included a multidisciplinary team of healthcare professionals (geriatricians, hospitalists, behavioral psychologists, etc.) and experienced mixed-methods researchers, created these questions based on their preliminary conversations with OA patients and their care partners in the early days of the pandemic. The study team met several times to refine the questions prior to study implementation.
For older adults, these questions included: “experience: tell me about your usual day now that you are in isolation,” “experience: what precautions do you take when leaving the home?,” and “needs: Is there anything you can think of that would make it easier on older adults to obtain the care or companionship they need when isolating at home?”. For care partners, questions included: “experience: how do you continue providing care while maintaining a safe distance?,” “experience: in what ways has this pandemic affected your ability to provide care?” and “needs: Is there anything you can think of that would make it easier on the older adult to obtain the care or companionship he/she needs when isolating at home?”. See Appendices A and B for the patient and care partner interview guides, respectively.
Statistical analyses
Quantitative analyses
For the quantitative data, overall scores for each of the standardized measures were computed. For categorical measures or items, frequencies and percentages were calculated. For continuous items or measures, means and standard deviations were calculated.
Qualitative analyses
For the qualitative data, interviews were audio-recorded and transcribed. We utilized a top-down provisional coding approach to qualitative data analysis [23], in which members of the research team (AM, LS, EB, MD, MC, AM) reviewed the transcriptions with pre-established response themes in mind from prior to the interviews, and created a preliminary codebook of themes in response to each open-ended question. Two coders (TP and JT) reviewed the transcripts independently and coded the absence or presence of each theme for each OA and care partner. The two coders met to discuss agreement. Disagreements over the presence/absence of a theme were settled by a third party (AM).
Quantitative and select qualitative data relevant to being a care partner of an OA with AD/ADRD were also summarized across care partners of OAs with and without AD/ADRD.