This survey was conducted by NORC at the University of Chicago. Data were collected using the AmeriSpeak panel, NORC's probability based panel designed to be representative of the U.S. household population. Panel members were randomly drawn from AmeriSpeak. The final stage completion rate is 33.9%. The overall margin of sampling error is +/-4.28 percentage points at the 95 percent confidence level, including the design effect. The margin of sampling error may be higher for subgroups. Once the sample has been selected and fielded, and all the study data have been collected and made final, a post-stratification process is used to adjust for any survey nonresponse as well as any non-coverage or under and oversampling resulting from the study specific sample design. Post-stratification variables included age, gender, census division, race/ethnicity, and education. Weighting variables were obtained from the 2018 Current Population Survey. The weighted data reflects the U.S. population of adults age 70 and over. NOTE: All results show percentages among respondents, unless otherwise labeled.

Background/Objectives To understand the range of symptoms that present to family caregivers of community-dwelling persons with Alzheimer's disease and related dementias (ADRD). Design Six-month longitudinal prospective study to identify the incidence of new or worsening symptoms and their association with acute care medical service use. Setting Community-based sample of volunteers from multiple states. Participants 136 patient-caregiver dyads with a range of dementia severity. Measurements 44 symptoms and signs common in older persons and/or persons with dementia; frequency of emergency department visits, hospitalizations, and death; and associations between reported symptoms and acute medical care. Results During a mean of 5.7 months' follow-up, new or worsening organ-specific (90% of participants), nonspecific (89%), and behavioral (88%) symptoms were common, with the average caregiver reporting seven new or worsening symptoms. Most common were worsening confusion (74%), decreased activity (64%), agitation (57%), hallucinations/delusions (45%), voice and speaking problems (45%), not eating or drinking (44%), and stress/anxiety (41%). Hospitalization and emergency department use occurred respectively in 19% and 20% of participants, and were associated with organ-specific symptoms (OR 3.15, P=0.02), less so with nonspecific symptoms (OR 2.27, P=0.07), and very little with behavioral symptoms (OR 1.44, p=0.38). Within each symptom category, certain symptoms were significantly associated with acute medical service use. Conclusion Family caregivers of persons with ADRD must respond to a variety of medical, nonspecific, and behavioral symptoms. The high incidence of new or worsening symptoms and of acute medical care use suggests a need to better target symptom evaluation and management in caregiver education.

The COVID-19 pandemic has rapidly altered ambulatory health care delivery and may have worsened disparities in health care access. To assess the telehealth implementation experiences of ambulatory personnel in different disciplines and their perspectives on potential telehealth disparities, and to make recommendations for more equitable telehealth delivery. We used a convergent parallel mixed-methods design. Clinic managers from geriatric medicine, internal medicine, and psychiatry e-mailed a survey to clinicians and staff regarding experiences with telehealth care delivery. Quantitative survey responses were analyzed with Fisher’s Exact tests. Qualitative responses were coded thematically. Recommendations were categorized by type of implementation strategy. Quantitative and qualitative findings on telehealth disparities were merged in a joint data display. Respondents (n = 147, 57% response rate) were distributed across three specialties: 66% internal medicine, 19% psychiatry, and 14% geriatric medicine. Prior to 2020, 77% of clinicians had never delivered telehealth services. By Spring 2020, 78% reported conducting more than half of clinic visits by telehealth. Among clinicians, 52% agreed/strongly agreed that rapid telehealth implementation exacerbated access to care disparities to: older adult patients, those with limited internet access, and those needing interpretation services. Staff expressed similar difficulties with telehealth set-up especially for these patients. To improve telehealth equity, clinicians recommended to: (i) change infrastructure; (ii) train and educate stakeholders; and (iii) support clinicians. Clinicians and staff reported specific subpopulations had challenges in accessing telehealth visits. To avoid perpetuating telehealth access disparities, further co-discovery of equitable implementation strategies with patients and clinics are urgently needed.

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