Tina Sadarangani

Abstract

The growing number of people living with dementia (PLWD) requires a coordinated clinical response to deliver pragmatic, evidence-based interventions in frontline care settings. However, infrastructure to support such a response is lacking. Moreover, there are too few researchers conducting rigorous embedded pragmatic clinical trials (ePCTs) to make the vision of high quality, widely accessible dementia care a reality. National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease and Related Dementias Clinical Trials (IMPACT) Collaboratory seeks to improve the pipeline of early career researchers qualified to lead ePCTs by funding career development awards. Even with support from the Collaboratory, awardees face practical and methodological challenges to success, recently exacerbated by the COVID-19 pandemic. We first describe the training opportunities and support network for the IMPACT CDA recipients. This report then describes the unique career development challenges faced by early-career researchers involved in ePCTs for dementia care. Topics addressed include challenges in establishing a laboratory, academic promotion, mentoring and professional development, and work-life balance. Concrete suggestions to address these challenges are offered for early-career investigators, their mentors, and their supporting institutions. While some of these challenges are faced by researchers in other fields, this report seeks to provide a roadmap for expanding the work of the IMPACT Collaboratory and initiating future efforts to recruit, train, and retain talented early-career researchers involved in ePCTs for dementia care.

Abstract

In this study, we examine how full nurse practitioner (NP) practice authority affects racial and ethnic diversity of the NP workforce. Specifically, the purpose of our research is to understand the relationship between the racial and ethnic composition of the NP workforce, NP level of practice authority, and the communities they service. In this paper, we compare the ethnic and racial composition of the NP workforce to the composition of the state's population, and then observe if there are any noticeable differences in the patients served by NPs when we compare full practice authority (FPA) and non-FPA states. We also estimate how FPA affects the race and ethnicity of Medicare patients served by NPs.

Abstract

In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdis-ciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or be-haviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs (n = 11) focused on physical changes, whereas ADSC staff (n = 33) emphasized changes in speech and social interactions in addition to the other categories. Al-though ADSC staff and PCPs (n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD.

Abstract

In order to reduce care partner strain and support aging in place for people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD), adult day centers (ADCs) must manage behavioral and psychological symptoms of dementia (BPSD). The purpose of this paper is to identify person-centered care strategies used by center staff to manage BPSD. Six focus groups with center staff (n = 31) were conducted. Data were analyzed using directed content analysis guided by Kitwood’s conceptual approach to cultivating personhood in dementia care. Themes were identified and organized within Kitwood’s framework. The results demonstrate that staff incorporate evidence-based person-centered approaches to AD/ADRD care that align with Kitwood’s principles of comfort, attachment, inclusion, and identity. Staff individualize their approach to people with AD/ADRD within a group setting. They monitor, engage, socially stimulate, and, when needed, de-stimulate them. Centers are flexible social environments with underrecognized expertise managing BPSD using person-centered approaches.

Abstract

Morbidity and mortality from COVID-19 have unduly affected older adults from racial and ethnic minority groups. In this article, we highlight the experiences and vulnerabilities of diverse older adults with complex health and social needs when their access to vital, but overlooked, community-based adult day service centers (ADSCs) was abruptly cut off during a pandemic. Pandemic-related ADSC closures left vulnerable older adults and their care partners without essential daily support and services, such as health monitoring and socialization. However, the magnitude of the impact of ADSC closures on well-being, particularly among members of racial/ethnic minority groups, has yet to be measured with any form of "big data" because large-scale, nationally representative data sets consisting of participant-level information and outcomes associated with ADSC participation do not yet exist. Unmet needs of older adults resulting from pandemic-related ADSC closures are underrecognized because of a lack of systematic data collection, undermining efforts to achieve health equity. We call on ADSCs to link rigorous collection of racial and ethnic data to quality measures of access to equitable "age-friendly" care as a means of better supporting diverse community-dwelling older adults beyond the COVID-19 pandemic.

Abstract

Background: Approximately one third of adults in adult day services (ADS) centers have Alzheimer's disease (AD) and AD-related dementias (ADRD). Understanding of the impact and effectiveness of ADS on persons living with dementia (PLWD) is limited by a lack of patient and caregiver relevant outcomes (PCRO) data. We identified PCROs collected at ADS sites in states that mandate serial data collection and examined the degree to which these data align with established Dementia Care Practice Recommendations (DCPR) and PCROs used in other areas of long-term care. Methods: We conducted an item analysis of regulatory forms used by ADS. Consistent with the methodology used by the Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory for PCROs collected in other long-term care settings, we created a matrix informed by DCPR. We matched each item in regulatory forms reflecting a PCRO to one of the seven DCPR domains as well as to the 53 PCROs from other long-term care sectors. Results: Ten states routinely collect outcome data in ADS. Among these, 80% assess cognitive function. All 10 states capture PLWD's ability to complete activities of daily living. Presence and frequency of behavioral symptoms were collected by 80% of states. Very few or, in some cases, none of the 10 states, collected PCROs related to care planning and coordination, education, social support, and/or family caregiver burden and support. Discussion: Lack of standardized collection of PCROs hampers researchers’ understanding of ADS. The vast majority of PCROs collected center on participants’ physical health; conversely, data on socialization, social support, and caregiver well-being, which are purportedly the most impactful services offered by ADS centers, are rarely collected. ADS would be well served to focus on these outcome domains as the resulting data could paint a more complete picture of the holistic impact of ADS on PLWD and their caregivers.