Komal Patel Murali

Abstract

The rising prevalence of Alzheimer's disease and Alzheimer's disease-related dementias has led to renewed public discourse and policy changes in response to the care needs of persons living with dementia and their care partners. Comprehensive dementia care models are central to many recent policy initiatives, most notably the Centers for Medicare & Medicaid Services Guiding an Improved Dementia Experience model. Gerontological nursing research is uniquely positioned to design and lead research investigating the effectiveness of these initiatives, as well as the dissemination and scaling of existing comprehensive dementia care models. The current Annual State of the Science Review provides an overview of the current state of comprehensive dementia care models in the United States and relevant policies. Challenges and opportunities for nursing education, research, and implementation across the translational research continuum are also outlined. [Research in Gerontological Nursing, 18(1), 7-16.].

Abstract

Palliative care improves the quality of life for seriously ill patients, but misconceptions and knowledge gaps hinder its implementation in home healthcare (HHC). This study developed and pilot-tested HHC-specific questionnaires to measure palliative care knowledge, attitudes, and confidence (PC-KAC) among clinicians, patients, and caregivers. Using literature reviews, expert input, and cognitive interviews, the questionnaires were refined to ensure clarity, practical relevance, and content validity. Pilot testing revealed widespread confusion about palliative care, with patients and caregivers often conflating it with hospice care and holding misconceptions about opioid use for pain and symptom management. While clinicians demonstrated adequate knowledge, gaps in pain management and confidence in handling emergencies were evident. These findings highlight the need for targeted education and training to integrate palliative care effectively into HHC, improving patient outcomes and supporting interdisciplinary collaboration.</jats:p>

Abstract

Background and Objectives: Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research. Research Design and Methods: Using integrative review methodology by Whittemore and Knafl, 5 databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, and Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies. Results: Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity. Discussion and Implications: Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

Abstract

BACKGROUND AND OBJECTIVES: Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research.RESEARCH DESIGN AND METHODS: Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies.RESULTS: Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity.DISCUSSION AND IMPLICATIONS: Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

Abstract

Background: In the United States, nearly 1 million older adults reside in assisted living facilities, which aim to provide support for safe, autonomous living. However, low-income residents, especially those in Medicaid-supported facilities, experience unmet medical and social complex care needs and limited serious illness communication due to limited resources. Objective: The objective of this study was to explore the complex care needs and serious illness communication challenges experienced by low-income older adults in Medicaid-supported assisted living. Methods: A qualitative secondary framework analysis was conducted on data from a parent qualitative study involving 17 residents aged 60 and older with serious illnesses at a Medicaid-supported facility in New York City. Residents completed the Edmonton Symptom Assessment Scale and participated in semistructured interviews. This study was guided by the National Consensus Project for Quality Palliative Care, focusing on the residents’ experiences, complex care needs, and communication within palliative care domains. Results: Residents were predominantly Black and Hispanic, with nearly one-third having a history of homelessness or shelter use, and they experienced a high symptom burden. Four key themes emerged: (1) compromised quality of life; (2) high symptom burden and limited access to care, with residents reporting pain, fatigue, and emotional distress; (3) communication gaps while navigating health care, resulting in frustration and feelings of being unheard; and (4) fragmented care coordination, which exacerbated feelings of isolation and mistrust in the health care system. Conclusion: The findings reveal that Medicaid-supported assisted living residents encounter substantial challenges related to complex care needs and serious illness communication. There is an urgent need for community-based interventions to enhance care access, improve symptom management, and facilitate effective communication, ultimately supporting the residents’ quality of life and health outcomes. Enhanced training for staff and policy changes are key to addressing these systemic barriers to care.

Abstract

Background: In the United States, nearly 1 million older adults reside in assisted living facilities, which aim to provide support for safe, autonomous living. However, low-income residents, especially those in Medicaid-supported facilities, experience unmet medical and social complex care needs and limited serious illness communication due to limited resources. Objective: The objective of this study was to explore the complex care needs and serious illness communication challenges experienced by low-income older adults in Medicaid-supported assisted living. Methods: A qualitative secondary framework analysis was conducted on data from a parent qualitative study involving 17 residents aged 60 and older with serious illnesses at a Medicaid-supported facility in New York City. Residents completed the Edmonton Symptom Assessment Scale and participated in semistructured interviews. This study was guided by the National Consensus Project for Quality Palliative Care, focusing on the residents’ experiences, complex care needs, and communication within palliative care domains. Results: Residents were predominantly Black and Hispanic, with nearly one-third having a history of homelessness or shelter use, and they experienced a high symptom burden. Four key themes emerged: (1) compromised quality of life; (2) high symptom burden and limited access to care, with residents reporting pain, fatigue, and emotional distress; (3) communication gaps while navigating health care, resulting in frustration and feelings of being unheard; and (4) fragmented care coordination, which exacerbated feelings of isolation and mistrust in the health care system. Conclusion: The findings reveal that Medicaid-supported assisted living residents encounter substantial challenges related to complex care needs and serious illness communication. There is an urgent need for community-based interventions to enhance care access, improve symptom management, and facilitate effective communication, ultimately supporting the residents’ quality of life and health outcomes. Enhanced training for staff and policy changes are key to addressing these systemic barriers to care.

Abstract

The purpose of this article was to analyze the concept of "the fighter in the intensive care unit (ICU)"per the scientific literature and the impact this mentality has on care administered in the ICU. A literature review and a concept analysis based on Rodger's evolutionary method were performed to identify surrogate terms, antecedents, attributes, and consequences pertaining to the "fighter"in the ICU. Thirteen articles with a focus on "the fighter"were included in this analysis. There is a strong desire to remain optimistic and maintain high spirits as a coping mechanism in the face of extreme prognostic uncertainty. Themes that emerged from the literature were the need to find inner strength and persist in the face of adversity. The concept of "the fighter in the ICU"can serve as either adaptive or maladaptive coping, depending on the larger clinical picture. Patient experiences in the ICU are fraught with physical and psychological distress. How the patient and family unit cope during this anxiety-provoking time is based on the individual. Maintaining optimism and identifying as a fighter can be healthy ways to adapt to the circumstances. This concept analysis highlights the importance of holistic care and instilling hope particularly as patients may be nearing the end of life.