The Need for Person-Centered Measures for Dementia Research and Care

The importance of person-centered medical and psychosocial care has become widely recognized, but there is abundant evidence that care is not always person-centered. In 2018, the Alzheimer’s Association published their evidence-informed Dementia Care Practice Recommendations, which address nine domains all grounded in a person-centered perspective. Following that work, the Association launched LINC-AD -- Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia. An early effort of LINC-AD, and the focus of this symposium, examined what measures are available to guide care and assess outcomes, and the extent to which they embrace person-centeredness. The results have been disappointing. This session will highlight the importance of person-centered measures in five domains of the Dementia Care Practice Recommendations, based on comprehensive reviews of literature. Each paper, presented by LINC-AD research advisors, will examine available measures and raise questions about gaps using a person-centered lens. Katie Maslow will describe frequently used measures and identify person-centered measures that could be added to studies of alternate procedures intended to increase detection and diagnosis. Drs. Mast and Molony will discuss a person-centered approach to item development and testing for assessment. Emilee Ertle will discuss the need to measure interpersonal and contextual factors associated with behavioral expressions. Drs. Prizer and Zimmerman will compare measures of dressing ability and their person-centered components. Dr. Calkins will examine the strengths and limitations of environmental assessment tools. As Discussant, Dr. Gitlin will integrate the findings from all five presentations, suggesting directions for the future.

Measurement for Something as Personal as Dressing is Not Personalized

In 2018, the Alzheimer’s Association set forth Dementia Care Practice Recommendations in nine domains, one being support for activities for daily living (e.g., dressing, toileting, eating/nutrition). For example, preservation of dressing independence is important for dignity, autonomy, and to decrease caregiver burden. Measurement is necessary to guide care and assess outcomes related to dressing, but availability of related measures to assess processes, structures, and outcomes of care has not been examined; more so, the extent to which the related measures are person-centered is completely unexplored territory. This session will present a critical assessment of available measures grounded in the Donabedian Model. Of 21 identified measures, 4 assessed dressing alone, 16 included dressing as part of a larger scale, and 1 included dressing as a part of a scale to screen for dementia; none were person-centered. This session will suggest modifications to and need for new measures for person-centered dressing.

Battery-free, wireless soft sensors for continuous multi-site measurements of pressure and temperature from patients at risk for pressure injuries

Capabilities for continuous monitoring of pressures and temperatures at critical skin interfaces can help to guide care strategies that minimize the potential for pressure injuries in hospitalized patients or in individuals confined to the bed. This paper introduces a soft, skin-mountable class of sensor system for this purpose. The design includes a pressure-responsive element based on membrane deflection and a battery-free, wireless mode of operation capable of multi-site measurements at strategic locations across the body. Such devices yield continuous, simultaneous readings of pressure and temperature in a sequential readout scheme from a pair of primary antennas mounted under the bedding and connected to a wireless reader and a multiplexer located at the bedside. Experimental evaluation of the sensor and the complete system includes benchtop measurements and numerical simulations of the key features. Clinical trials involving two hemiplegic patients and a tetraplegic patient demonstrate the feasibility, functionality and long-term stability of this technology in operating hospital settings.

Jewish Values in Medical Decision-making for Unrepresented Patients: A Ritualized Approach

Determining appropriate care for patients who cannot speak for themselves is one of the most challenging issues in contemporary healthcare and medical decision-making. While there has been much discussion relating to patients who left some sort of instructions, such as an advance directive, or have someone to speak on their behalf, less has been written on caring for patients who have nobody at all available to speak for them. It is thus crucial to develop clear and rigorous guidelines to properly care for these patients. The Jewish tradition offers an important perspective on caring for unrepresented patients and determining approaches to guide care providers. This article develops an understanding of fundamental Jewish principles that can provide clear guidance in navigating this challenge. It applies those values to a specific set of suggested behaviors, one of which adds a novel ritualized component to what has been recommended by bioethicists in the past.

P61 Impact of the COVID-19 pandemic on the presentation and management of acute appendicitis: a single-centre analysis

Introduction The COVID-19 pandemic has influenced the delivery of healthcare. In accordance with the UK Joint Royal Colleges’ advice the management of acute appendicitis (AA) changed with greater consideration for non-operative management (NOM) or open appendicectomy where operative management (OM) s sought. Our aim is to share our experience of the presentation, management and outcomes for patients presenting to our Trust with AA to guide care for future viral pandemics. Methods This single-centre retrospective cohort study included patients diagnosed with AA in March to July 2019 compared with March to July 2020. Medical records were used to evaluate demographics, inflammatory markers, imaging, severity, management, histology, length of stay (LOS), complications and 90-day outcomes. Results There were 149 and 125 patients in the 2019 and 2020 cohort, respectively. 14 patients (9.4%) had NOM in 2019 versus 31 patients (24.8%) in 2020 (p = 0.001). In the 2019 OM group 125 patients (92.6%) had laparoscopic appendicectomy versus 69 (73.4%) in 2020. 59 patients (39.6%) had a CT in 2019 versus 70 (56%) in 2020. The median LOS was 4 days (interquartile range (IQR) 3 to 6 days) in 2019 and 3 days (IQR 2 to 5 days) in 2020 (p = 0.03). Two patients in each year who received NOM had treatment failure (14.3% in 2019 and 6.5% in 2020). Three patients in 2019 who had OM had treatment failure (2.2%). Of 95 patients tested for COVID-19 all but one was negative. Conclusion During the COVID-19 pandemic there was no observed increase in severity of AA, patients had a shorter LOS and were more likely to have imaging. NOM proportionally increased with no observed change in outcomes.

Vasculitis in pregnancy

A growing number of women with vasculitis are becoming pregnant, largely the result of improved patient outcomes in vasculitis as a whole. Given such pregnancies are infrequent, there is a paucity of outcomes data from which to guide care. Women with vasculitis have higher rates of pregnancy loss and pre-term birth than the general population, and active disease contributes to negative results for the mother and foetus. Pregnancies have been reported in a variety of vasculitis types, with Takayasu arteritis and Behçet’s disease more commonly observed. The majority of pregnancies in women with vasculitis can result in favorable outcomes for both the mother and baby; planning prior to conception, well-controlled disease, the use of pregnancy compatible medications and close follow up with a multidisciplinary team are key to a successful pregnancy.

The way of life of the unhoused people as an enhance for COVID-19 care

ABSTRACT Objective: To analyze the way of life of the unhoused people to enhance health care in the pandemic. Methods: A qualitative, interdisciplinary research, with participant observation and 24 interviews with the unhoused people. Empirical categories and bibliographic search on this population and COVID-19 guided simple actions aimed at care. Results: The group at greatest risk for COVID-19 use drugs compulsively; starves constantly; discontinues drug treatment for tuberculosis, HIV, and diabetes; has underdiagnosis of Depression; has difficulty sheltering and uses inhaled drugs. This way of life increases the risk of worsening COVID-19 and brings great challenges to health services. Several proposals to guide care considered these results and the new routine caused by the pandemic. Final considerations: The way of life of the studied population increased their vulnerability in the pandemic, as well as the perception of risk of disease transmission by the population in general.

The Application of Neurodiagnostic Studies to Inform the Acute Management of a Newborn Presenting With Carbamoyl Phosphate Synthetase 1 Deficiency

Neonatal-onset urea cycle disorders (UCDs) may result in hyperammonemic (HA) encephalopathy presenting with several neurologic sequelae including seizures, coma, and death. However, no recommendations are given in how and when neurodiagnostic studies should be used to screen or assess for these neurologic complications. We present a case of carbamoyl phosphate synthetase 1 (CPS1) deficiency in a newborn female in which electroencephalogram monitoring to assess encephalopathy and seizures, and magnetic resonance imaging measurements of brain metabolites were used to guide care during her hyperammonemic crisis. Her neurologic course and response to treatment characterizes the significant neurologic impact of HA encephalopathy. Our group herein proposes a clinical neurodiagnostic pathway for managing acute HA encephalopathy.