An Ethnographic Study of Stigma and Ageism in Residential Care or Assisted Living

This study explored aspects of stigmatization for older adults who live in residential care or assisted living (RC–AL) communities and what these settings have done to address stigma. Design and recognition of resident preferences and strengths, rather than their limitations

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

The Examination of Determinants And Barriers To End-Of-Life Decision Making and Planning

As individuals are living longer, in many cases with chronic diseases, there is an increased focus on end-of-life (EOL) planning and decision making. This includes a broad spectrum of choices including advance care planning (ACP) and turning to palliative care or hospice care. Although there has been an increase in palliative and hospice care enrollment and ACP engagement over the past decade, participation remains low for certain subgroups of the population. The purpose of this symposium is to offer insight into reasons for these varying rates of engagement by exploring determinants and barriers to EOL decision making and planning and by examining caregiver knowledge of EOL decision making and planning from the service provider perspective. The first three studies examine various types of influences in EOL decision making and planning. Inoue and colleagues explore factors associated with the length of hospice stay, and Gaines and colleagues examine the impact of environmental characteristics in ACP. Ornstein and colleagues use Denmark registry data to assess the role of kinlessness at the time of death in EOL decision making and healthcare utilization. The final presentation by Noh and colleagues examines how service providers in rural areas perceive community residents’ knowledge of ACP and palliative care. The discussion following these presentations will compare findings across different forms of EOL decision making and planning, consider the impact of the varying methodological approaches used, and highlight implications of these works for potential interventions and policies related to EOL decision making and planning

The Examination of Determinants And Barriers To End-Of-Life Decision Making and Planning

As individuals are living longer, in many cases with chronic diseases, there is an increased focus on end-of-life (EOL) planning and decision making. This includes a broad spectrum of choices including advance care planning (ACP) and turning to palliative care or hospice care. Although there has been an increase in palliative and hospice care enrollment and ACP engagement over the past decade, participation remains low for certain subgroups of the population. The purpose of this symposium is to offer insight into reasons for these varying rates of engagement by exploring determinants and barriers to EOL decision making and planning and by examining caregiver knowledge of EOL decision making and planning from the service provider perspective. The first three studies examine various types of influences in EOL decision making and planning. Inoue and colleagues explore factors associated with the length of hospice stay, and Gaines and colleagues examine the impact of environmental characteristics in ACP. Ornstein and colleagues use Denmark registry data to assess the role of kinlessness at the time of death in EOL decision making and healthcare utilization. The final presentation by Noh and colleagues examines how service providers in rural areas perceive community residents’ knowledge of ACP and palliative care. The discussion following these presentations will compare findings across different forms of EOL decision making and planning, consider the impact of the varying methodological approaches used, and highlight implications of these works for potential interventions and policies related to EOL decision making and planning

Methods for Leveraging a Health Information Exchange for Public Health: Lessons Learned from the NW-PHIE Experience

The intent of this article is to provide public health and health information exchanges (HIEs) insight into activities and processes for connecting public health with clinical care through HIEs. In 2007 the CDC issued a Request for Proposal (RFP) for the “Situational Awareness through Health Information Exchange” project. The project’s goals are to connect public health with health information exchanges (HIEs) to improve public health’s real-time understanding of communities’ population health and healthcare facility status. This article describes the approach and methodology used by the Northwest Public Health Information Exchange to achieve the project’s goals. The experience of the NWPHIE Collaboration provides an organizational and operational roadmap for implementing a successful regional HIE that ensures secure exchange and use of electronic health information between local and state public health and health care entities. Keywords: Data Collection; Electronic Health Records; Health Information Exchange; Information Management; Information Services; Medical Record Linkage; Public Health; Public Health Informatic

The Use of Mobility Devices and Personal Assistance: A Joint Modeling Approach

Objective: To examine whether mobility device use substitutes for personal assistance among U.S. older adults. Method: Using the National Health and Aging Trends Study, we identified 3,211 community-living older adults (aged 65 and older) who reported mobility difficulties at baseline. We used recursive bivariate probit models to simultaneously estimate the effect of covariates on the likelihood of using (a) mobility devices and (b) personal assistance to accommodate mobility difficulty. Independent variables included age, gender, race, physical/mental health status, cognition, and comorbidities. Results: Predictors of the use of personal assistance and mobility devices exhibit important similarities and differences. Device use reduced the odds of receiving personal assistance by 50% (odds ratio [OR] = 0.50, 95% confidence interval [CI] = [0.29, 0.86]). Discussion: Findings suggest device use substitutes for personal assistance. Practitioners and policymakers should promote the appropriate use of mobility devices while recognizing the importance of assistance with some groups and the potential of increasing mobility device use

The Use of Mobility Devices and Personal Assistance: A Joint Modeling Approach

Objective: To examine whether mobility device use substitutes for personal assistance among U.S. older adults. Method: Using the National Health and Aging Trends Study, we identified 3,211 community-living older adults (aged 65 and older) who reported mobility difficulties at baseline. We used recursive bivariate probit models to simultaneously estimate the effect of covariates on the likelihood of using (a) mobility devices and (b) personal assistance to accommodate mobility difficulty. Independent variables included age, gender, race, physical/mental health status, cognition, and comorbidities. Results: Predictors of the use of personal assistance and mobility devices exhibit important similarities and differences. Device use reduced the odds of receiving personal assistance by 50% (odds ratio [OR] = 0.50, 95% confidence interval [CI] = [0.29, 0.86]). Discussion: Findings suggest device use substitutes for personal assistance. Practitioners and policymakers should promote the appropriate use of mobility devices while recognizing the importance of assistance with some groups and the potential of increasing mobility device use

Staff Reports of Behavioral Expressions of Persons with Dementia in 250 Assisted Living Communities.

Assisted living (AL) residents with dementia commonly exhibit behavioral expressions (BEs), yet no study has examined how AL staff perceive of and respond to BEs in terms of the ABC model of antecedents, behaviors and consequences, or how perceptions relate to organizational characteristics. Understanding staff perceptions may inform interventions

Evacuating or Sheltering In Place During a Disaster: How Assisted Living Administrators Make The Decision

The decision to evacuate or shelter in place during a natural disaster such as a hurricane is complicated and poses risks to long-term care residents. While research has documented the difficulty of the evacuation decision for nursing home administrators, little is known about how assisted living residence (ALR) administrators make this decision. This is a concern given the physical and cognitive impairment level of many ALR residents, the increasing number of ALRs in the U.S., and the frequency of natural disasters. The purpose of this paper was to explore the factors that influenced whether assisted living administrators evacuated their ALRs for Hurricane Irma, a large hurricane that made landfall on Florida’s Southwest coast in September, 2017. This qualitative study used semi-structured interviews and focus groups with ALR owners or administrative staff (N=60) with questions including how they prepared for Hurricane Irma, their experiences during the hurricane, including whether they evacuated or sheltered in place, and lessons learned. The sample includes small (\u3c 25 beds) and large ALRs in the multiple Florida counties affected by the hurricane. A content analysis approach was used. Atlas.ti version 7 was used for initial and axial coding. Prevalent themes included “emergency management planning”, “logistics”, “pressure”, “storm characteristics,” and “staffing”. The results of this study have implications for long-term care policy and training, potentially leading to changes in how ALR leaders prepare for and respond to disasters to improve the safety of residents

Supplemental Material - “We Did More Damage”: How COVID-19 Collapsed the Care Convoys of Residents Living With Dementia

Supplemental Material for “We Did More Damage”: How COVID-19 Collapsed the Care Convoys of Residents Living With Dementia by Sara E. Hackett, Lindsay J. Peterson, Carlyn E. Vogel, and Debra Dobbs in Journal of Applied Gerontology</p