Bangerter, Lauren R.

Abstract People with late-stage Alzheimer’s disease and related dementias (ADRD) who are assumed to have lost coherent cognitive capacity may exhibit unexpected episodes of lucidity (EL). Given the transient nature and lack of scientific explanation of the phenomenon, EL is under-investigated and poorly understood. To better understand this phenomenon, we set out to develop an operational definition of EL. Based on survey data from former and current family caregivers participating in UsAgainstAlzheimer’s A-LIST® (N = 480), we defined four EL typologies. We then interviewed 25 caregiver respondents about their experiences and used analyzed qualitative data to refine the preliminary typologies. Finally, we conducted a Delphi consensus panel with clinicians, researchers, and health care providers with medical, pharmacological, and clinical expertise to describe potential explanations for EL to help further refine the typologies. Next we will test the validity of these typologies in a prospective, demographically diverse sample of current family caregivers.

AbstractIntroductionLittle is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL).MethodsIn an electronic, cross‐sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A‐LIST®, participants who reported witnessing an EL were asked how positive and stressful ELs were, if they made or changed decisions based on an EL, and what resources they sought out to explain ELs.ResultsCaregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs.DiscussionThese exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.

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 To develop an operational definition of and typologies for episodes of lucidity (EL), we conducted a cross-sectional study of former/current family caregivers from UsAgainstAlzheimer’s A_LIST (N = 538). More than 60% of caregivers (n = 294, 62%) reported witnessing EL with their care recipient over the course of their dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted <30 minutes. About half the episodes were characterized by uncharacteristic speech and communication. Caregivers perceived these experiences positively (M = 4.10; range = 1–5), but also expressed desire to know why/when EL occurs and how to best respond to it. Data will be used to refine definitions and typologies, and then a prospective, demographically diverse survey will be administered to family caregivers to assess predictors of EL, linking EL to caregiver well-being and bereavement response.

AbstractBackgroundFamily caregivers are major providers of long‐term care and support for family members with Alzheimer’s disease and related dementias (ADRD). Caregiving for a person with ADRD is a demanding role that is linked to physical, emotional, relational, and financial burden. Ensuring that ADRD caregivers are adequately supported is rapidly becoming a cornerstone of successful public health policy agendas in the United States.MethodWe conducted a review of publicly available legislation and policy briefs to identify federal policies that support ADRD caregivers, both directly and indirectly.ResultFederal policies for caregivers have evolved and increased over time, most notably through the National Family Caregiver Support Program, part of the Older Americans Act. The passage of recent legislation (e.g., the RAISE Caregiver Act and the BOLD Infrastructure for Alzheimer’s Act) indicate a pattern of targeted investment in supporting ADRD caregivers.ConclusionGerontology research and public policy can and should intersect in order to optimize the effectiveness of policy efforts to support ADRD caregivers.

Abstract Family caregivers are major providers of long-term care and support for family members with age-related decline and disability. Caregiving is a demanding and complex undertaking that has demonstrated extensive physical, emotional, relational, and financial burden on families. These factors underscore the urgency of addressing the needs of family caregivers at the policy level. This presentation focuses on the origins, goals, and mandates of federal policy efforts that support family caregivers. This includes an analysis on how federal support for caregivers has evolved over time, most notably through the National Family Caregiver Support Program, part of the Older Americans Act. It will also discuss the passage of more recent legislation (e.g., RAISE Family caregiver Act and the Grandparents Raising Grandchildren Act) that will contribute to a national strategy to support family caregivers. Moreover, through the discussion of these policies, we will articulate specific areas where gerontology research and public policy can and should intersect in order to optimize the effectiveness of policy efforts to support family caregivers.

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.