Tina Sadarangani

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.

Abstract

Introduction: CareMOBI (Mhealth for Organizations to Bolster Interconnectedness) is a mobile application designed to facilitate information exchange between primary care providers (PCPs) and adult day centers (ADCs). A key function of CareMOBI is to synthesize information collected outside of the provider’s office (ie,: in the ADC or at home) and distill the most relevant data points into an exportable clinical summary that can help inform clinical decision making by the PCP with information from outside providers who are not formally embedded within health systems. In this study, we used a qualitative approach to understand the acceptability and utility of the clinical summary template within CareMOBI. Methods: Purposive sampling, followed by snowball sampling, was used to recruit PCPs from a variety of primary care practice settings (i.e. home-based, academic). Semi-structured interviews were conducted virtually to elicit feedback on the user-experience after interaction with a prototype template. Interviews were recorded, transcribed, and analyzed using content analysis. Results: Our sample (n = 10) consisted of physicians and nurse practitioners in a variety of settings. Feedback suggested that the summary template facilitates interdisciplinary, bidirectional, succinct, and relevant information exchange across care teams. The summary template effectively integrates observations and assessments from team members, centralizes them, and allows PCPs to hone in on the most salient components to inform clinical decision making for the geriatric patient. The summary gave PCPs “live texture” about what was happening outside the office and represented a significant improvement over other methodologies of information exchange. Prior to implementation into clinical practice, several refinements are necessary based on feedback including integration into the PCP’s workflow. Conclusions: The template was viewed by PCPs as a concise and actionable record, in contrast to current communication which is characterized as “bloated”—containing too many pages on nonessential information. The summary could potentially save PCP’s time in locating and analyzing historical data to enable rapid patient assessment and prompt more ready and informed action.

Abstract

Background: Persons living with dementia (PLWD) in adult day centers (ADCs) represent a complex and vulnerable population whose well-being is at risk based on numerous factors. Greater knowledge of the interaction between dementia, chronic conditions, and social determinants of health would enable ADCs to identify and target the use of their resources to better support clients in need of in-depth intervention. The purpose of this paper is to (a) classify PLWD in ADCs according to their level of medical complexity and (b) identify the demographic, functional, and clinical characteristics of those with the highest degree of medical complexity. Methods: This was a secondary data analysis of 3052 clients with a dementia diagnosis from 53 ADCs across the state of California between 2012 and 2019. The most common diagnosis codes were organized into 28 disease categories to enable a latent class analysis (LCA). Chi-square test, analysis of variance (ANOVA), and Kruskal-Wallis tests were conducted to examine differences among latent classes with respect to clinical and functional characteristics. Results: An optimal 4-class solution was chosen to reflect chronic conditions among PLWD: high medical complexity, moderate medical complexity, low medical complexity, and no medical complexity. Those in the high medical complexity were taking an average of 12.72 (+/− 6.52) medications and attending the ADC an average of 3.98 days (+/− 1.31) per week—values that exceeded any other class. They also experienced hospitalizations more than any other group (19.0%) and met requirements for the nursing facility level of care (77.4%). In addition, the group experienced the greatest frequency of bladder (57.5%) and bowel (15.7%) incontinence. Conclusions: Our results illustrate a high degree of medical complexity among PLWD in ADCs. A majority of PLWD not only have multimorbidity but are socially disadvantaged. Our results demonstrate that a comprehensive multidisciplinary approach that involves community partners such as ADCs is critically needed that addresses functional decline, loneliness, social isolation, and multimorbidity which can negatively impact PLWD.

Abstract

An understanding of adult day service centers’ (ADC) impacts on clients’ health and well-being has been hampered by a lack of large-scale data. Standardizing data collection is critical to strengthening ADC programs, demonstrating their effectiveness, and enabling them to leverage additional funding streams beyond Medicaid. We distributed an electronic survey on current data collection efforts to ADCs nationally to determine categories of data ADCs are collecting related to clients’ health. In our sample (N = 248), only 32% of ADCs collected patient-level data for research and analysis—most commonly on activities of daily living, cognition, nutrition, and caregiver strain. However, validated assessment tools were used in less than 50% of the cases. ADCs are willing to collect data: More than 70% reported a willingness to participate in future studies. National studies piloting data collection protocols with uniform outcome measures are needed to advance the understanding of ADCs’ capabilities and impacts.

Abstract

Objectives: Our study documented communication workflows across adult day care centers (ADCs) and primary care providers (PCPs) around complex needs of persons living with dementia (PLWD). We also identified barriers and facilitators to productive communication in clinical decision support and clinical information systems. Materials and Methods: We conducted 6 focus groups with ADC staff (N=33) and individual semistructured interviews with PCPs (N=22) in California. The eHealth Enhanced Chronic Care Model was used to frame the directed qualitative content analysis. Results: Our results captured cumbersome and ineffective workflows currently used to exchange information across PCPs and ADCs. Stakeholders characterized current communication as (1) infrequent, (2) delayed, (3) incomplete, (4) unreliable, (5) irrelevant, and (6) generic. Conversely, communication that was bidirectional, relevant, succinct, and interdisciplinary was needed to elevate the standard of care for PLWD. Discussion and Conclusion: ADCs possess a wealth of information that can support clinical decision-making across community-based providers involved in the care of PLWD, especially PCPs. However, effective information exchange is mired by complicated workflows that rely on antiquated technologies (eg, facsimile) and standard templates. Current information exchange largely focuses on satisfying regulatory guidelines rather than supporting clinical decision-making. Integrating community-based services into the health care continuum is a necessary step in elevating the standard of care for PLWD. In the absence of interoperable electronic health records, which may not be financially viable for ADCs, other options, such as mobile health, should be explored to facilitate productive information exchange of personalized relevant information.