Riffin, Catherine

Abstract More than 6 million adults in the United States are affected by Alzheimer’s Disease and related dementias (ADRD), the majority of whom rely on assistance from an unpaid caregiver (family, friends). The goal of the 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Healthcare Delivery, funded by the National Institute on Aging, was to establish a policy- and practice-aligned research agenda for enhancing ADRD caregiver engagement and support in healthcare settings. The Conference convened multidisciplinary thought leaders from across the United States to establish a set of actionable recommendations to advance the field. Recommendations centered on five key topics: 1) Identification and assessment of ADRD caregivers, 2) Reimbursement and financing for provider time spent on ADRD caregiver, identification, assessment, and support, 3) ADRD caregiver training and support, 4) Healthcare provider education, and 5) Technology. To support future work in each of the five priority areas, conference participants highlighted the importance of leveraging lessons from implementation science and models of equity and inclusion. Recommendations are intended to inform federal agencies and foundations about high-priority areas and motivate multidisciplinary collaborations to design care delivery systems that effectively engage and support ADRD caregivers.

Abstract Objective To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty. Data Sources/Setting Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona. Study Design This was a qualitative study using data collected from one‐on‐one, semi‐structured interviews with physicians. Data Collection By using purposeful “maximum variation” sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach. Primary Findings Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available. Conclusions Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

Abstract The presence of family caregivers in clinical encounters is becoming more common with the aging of the US population and the continued shift of care responsibilities from health professionals in clinical settings to family caregivers at home. Patients accompanied to clinical encounters by caregivers are more likely to be older, sicker, and have lower health literacy. Research shows, however, that providers often do not initiate any caregiver participation and when they do, conversations center on relaying technical medical information rather than preferences and capacity to provide caregiving assistance. Little is known about provider perceptions of engaging caregivers in clinical encounters. Using data from 20 semi-structured interviews with physicians from primary and specialty care, we identified 3 inter-related themes about engaging caregivers in clinical encounters: 1) ambivalence about caregivers’ role in clinical encounters; 2) trepidation about posing questions directly to caregivers; and, 3) beliefs that systemic barriers exist that inhibit integration of caregivers. Providers, especially in primary care encounters, chiefly view caregivers as sources of supplemental information or for absorbing or reinforcing clinical instructions for care at home. Providers also voiced concerns about the ethics of assessing caregiver capacity to provide assistance to the patient without having clinical authority to treat or adequate resources to provide to caregivers. Finally, providers identified structural barriers, including time constraints, for integrating caregivers into the clinical care team. Findings provide insight into provider attitudes on the caregivers’ role, a perspective that is essential for understanding opportunities and challenges for implementing caregiver interventions in clinical settings.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.