'It's been an extraordinary journey': Experience of engagement from the perspectives of people with post-stroke aphasia.

BACKGROUND: Engagement is recognized as an important factor in aphasia treatment response and outcomes, yet gaps remain in our understanding of engagement and practices that promote engagement from the client perspective. AIMS: The purpose of this phenomenological study was to explore how clients with aphasia experience engagement during their inpatient aphasia rehabilitation. METHODS & PROCEDURES: An interpretative phenomenological analysis approach guided the study design and analysis. Data were collected through in-depth interviews with nine clients with aphasia, recruited through purposive sampling, during their inpatient rehabilitation admission. Analysis was completed using a variety of analytic techniques including coding, memoing, triangulation between coders and team discussion. OUTCOMES & RESULTS: The analysis revealed that for clients with aphasia in the acute phrase of recovery, the rehabilitation process resembles travelling on a journey through a foreign land. Successful engagement in the journey was accomplished when one had a therapist who served as a trusted guide and was able to be a friend, invested, adaptable, a co-creator, encouraging and dependable. CONCLUSIONS & IMPLICATIONS: Engagement is a dynamic, multifaceted and person-centred process involving the client, provider and rehabilitation context. Findings from this work have implications for measuring engagement, training student clinicians to be skilled facilitators in engaging their clients and implementing person-centred practices that promote engagement within clinical settings. WHAT THIS PAPER ADDS: What is already known on the subject Engagement is recognized as an important factor in rehabilitation treatment response and outcomes. Prior literature suggests that the therapist plays a critical role in facilitating engagement within the client-provider relationship. Communication impairments associated with aphasia may negatively impact a client's ability to develop interpersonal connections and participate in the rehabilitation process. There is a dearth of research directly exploring the topic of engagement in aphasia rehabilitation, particularly from the perspective of clients with aphasia. Capturing the client perspective can provide novel insights regarding practices to foster and maintain engagement in aphasia rehabilitation. What this paper adds to existing knowledge This interpretative phenomenological study revealed that for individuals with aphasia in the acute phase of recovery, the rehabilitation process resembles travelling on a sudden and foreign journey. Successful engagement in the journey was accomplished when one had a therapist who served as a 'trusted guide' and was able to be a friend, invested, adaptable, a co-creator, encouraging and dependable. Through the client experience, engagement is seen as a dynamic, multifaceted and person-centred process involving the client, provider and rehabilitation context. What are the potential or actual clinical implications of this work? The current study highlights the complexity and nuance of engagement within the rehabilitation context, which has implications for measuring engagement, training student clinicians to be skilled in engaging their clients and implementing person-centred practices that promote engagement within clinical settings. It is necessary to recognize that client and provider interactions (and thus engagement) are embedded in and influenced by the broader healthcare system. With this in mind, a patient-centred approach to engagement in aphasia care delivery cannot be achieved through individual efforts only and may require prioritization and action at the systems level. Future work is needed to explore barriers and facilitators to enacting engagement practices, in order to develop and test strategies to support practice change.

Advanced-Comfort: Usability Testing of a Care Planning Intervention for Nursing Home Residents With Advanced Dementia.

Many nursing home (NH) residents with advanced dementia receive burdensome interventions rather than interventions that promote comfort or quality of life. The purpose of the current study was to test the usability of a novel intervention, ADVANCED-Comfort, which aims to enhance the provision of personalized care for residents with advanced dementia. The intervention comprises structured care plan meetings between the NH team and proxies of residents with dementia (e.g., family members). Using the ADVANCED-Comfort workbook, proxies create individualized care plans addressing six domains adapted from the Age-Friendly Health System Framework. The purpose of this article is to describe the intervention and its theoretical underpinnings and report the usability of the intervention evaluated with surveys, observation, and exit interviews. The study demonstrated that proxies and NH staff found the intervention usable (acceptable, appropriate, and feasible). Based on these preliminary findings, additional testing of the ADVANCED-Comfort intervention is warranted. [Journal of Gerontological Nursing, 49(11), 15-23.].

Guilt as an Influencer in End-of-Life Care Decisions for Nursing Home Residents With Advanced Dementia.

The concept of guilt has been studied in the context of caregivers of older adults with advanced dementia, usually describing the feelings a person has of placing a loved one in a long-term care facility; however, little research has been done to understand how nursing home staff and proxies for older adults with dementia describe guilt as a decision-influencer in end-of-life care. For the current study, private, semi-structured interviews were conducted with 158 nursing home staff and 44 proxies in 13 nursing homes across four demographic regions in the United States. Interviews were reviewed and analyzed for how the concept of guilt was perceived as a decision-influencer. Nursing home staff described guilt as an important influencer in why proxies make decisions about end-of-life care. Staff noted that proxies who felt guilty about their relationship with their loved one or lack of time spent at end-of-life tended to be more aggressive in care decisions, whereas no proxies mentioned guilt as an influencer in care decisions. Rather, proxies used language of obligation and commitment to describe why they make decisions. Findings highlight the disconnect between nursing home staff and proxies in what motivates proxies to make end-of-life decisions for loved ones. Nursing home staff should be aware of misconceptions about proxies and work to understand proxies' true rationale and motivations for making care decisions. [Journal of Gerontological Nursing, 48(1), 22-27.].

Trust of Nursing Home Staff Caring for Residents with Advanced Dementia: A Qualitative Descriptive Study of Family Caregivers' Perspectives.

BACKGROUND/OBJECTIVES: Studies of interpersonal trust within nursing homes (NHs) is limited. This study aimed to describe the perspectives of interpersonal trust in NH staff among family caregivers of residents with advanced dementia. Additionally, comparisons of Black and White caregivers' perspectives were also explored. DESIGN: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers' perspectives. PARTICIPANTS: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. RESULTS/CONCLUSIONS: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning. DESIGN: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers' perspectives. PARTICIPANTS: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. RESULTS/CONCLUSIONS: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust, trust for certain staff members and mistrust of others. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning.

Missing the Mark: The Complexity of African American Dementia Family Caregiving.

Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.

Managing Shame: A Grounded Theory of How Stigma Manifests in Families Living With Dementia.

BACKGROUND: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects. AIMS: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia. METHOD: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia. RESULTS: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact. CONCLUSIONS: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.

Examining the Beliefs of Skilled Nursing Facility Directors of Nursing Regarding BSN Completion and the Impact of Nurse Leader Education on Patient Outcomes.

Research suggests that acute care patients cared for by baccalaureate-educated nurses have better outcomes. Directors of nursing (DONs) in skilled nursing facilities (SNFs) have lower rates of baccalaureate attainment than acute care nurses for unclear reasons. To understand the interest in advancing education, researchers surveyed SNF DONs in Connecticut to examine their beliefs about academic advancement and the impact of DON education on resident outcomes. Nearly 70% of participants with diplomas and associate degrees lacked interest in degree advancement and did not believe a baccalaureate degree is necessary for DONs or that DON level of education impacts resident outcomes. Alternatives to degree completion may include interventions to provide SNF DONs with skills for improving resident outcomes.

A Thematic Analysis of Self-described Authentic Leadership Behaviors Among Experienced Nurse Executives.

OBJECTIVE: The aim of this study is to understand the behaviors experienced nurse executives use to create healthy work environments (HWEs). The constructs of authentic leadership formed the conceptual framework for the study. BACKGROUND: The American Association of Critical-Care Nurses recommends authentic leadership as the preferred style of leadership for creating and sustaining HWEs. Behaviors associated with authentic leadership in nursing are not well understood. METHODS: A purposive sample of 17 experienced nurse executives were recruited from across the United States for this qualitative study. Thematic analysis was used to analyze the in-depth, semistructured interviews. RESULTS: Four constructs of authentic leaders were supported and suggest unique applications of each including self-awareness (a private and professional self), balanced processing (open hearted), transparency (limiting exposure), and moral leadership (nursing compass). CONCLUSIONS: Authentic leadership may provide a sound foundation to support nursing leadership practices; however, its application to the discipline requires additional investigation.

"The Church of Online Support": Examining the Use of Blogs Among Family Caregivers of Persons With Dementia.

Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.

A Nurse Practitioner-Driven Palliative and Supportive Care Service in Nursing Homes: Evaluation of a Quality Improvement Project.

This article describes a quality improvement project implemented by a national postacute long-term care organization aimed at enhancing the provision of palliative care to nursing home residents. The project focused on improving advance care planning, end-of-life care, symptom management, and care of people living with serious illness. Both generalist and specialist palliative care training were provided to nurse practitioners in addition to implementing a system to identify residents most likely to benefit from a palliative approach to care. To evaluate the nurse practitioner experiences of the program, survey data were collected from nurse practitioners (N = 7) involved in the project at 5 months after implementation. Nurse practitioners reported the program was well received by nursing home staff, families, and residents. Most nurse practitioners felt more confident managing residents' symptoms and complex care needs; however, some reported needing additional resources for palliative care delivery. Most common symptoms that were managed included pain, delirium, and dyspnea; most common diagnoses cared for were dementia and chronic organ failure (eg, cardiac, lung, renal, and neurological diseases). In the next steps, the project will be expanded throughout the organization, and person- and family-centered outcomes will be evaluated.

Systematic Review Revisited, 2010-2020: The Effect on Surrogates of Making Treatment Decisions for Others.

Objectives: This study mapped research evidence spanning the last 10 years to identify the effect of being a surrogate decision maker for an incapacitated adult. Methods: A scoping review strategy was employed to allow for a focus on the breadth of the effect of surrogate decision making and to identify gaps in the existing research literature. Results: Surrogate decision making created emotional distress and burden for the majority of the SDMs. We found the negative effects on SDMs were linked to variety of stressors: fear of not knowing what the patient would want or being unable to fulfill the patient's actual or perceived wishes, feeling unprepared to assume the role of a SDM, and watching a loved one's health deteriorate over time. Discussion: Additional research is needed to elucidate the emotional burden of culturally diverse SDMs to determine their differences when compared to various groups.

Loneliness and Unmet Needs of Older Adults Living in Publicly Supported Housing.

Guided by the RE-AIM framework, the current study sought to examine the relationship between perceived needs of older adults living in publicly supported housing and loneliness. Participants were males and females aged 70 to 83 years who identified as White or Chinese. Using the Camberwell Assessment of Need Short Appraisal Schedule and UCLA Loneliness Scale, the relationship between residents' needs and loneliness was assessed to guide the development of interventions. Results revealed residents self-reported 54% of their needs were met and rated their loneliness at a score of 36.5 (moderate level). Furthermore, there was a medium positive correlation between unmet needs and loneliness whereby high unmet needs were associated with higher loneliness scores. Findings suggest that these older adults living in publicly supported housing are vulnerable to the negative consequences of loneliness. Implementing equitable and inclusive interventions to address the impact of loneliness in the context of social determinants of health is warranted. [Research in Gerontological Nursing, 16(5), 217-223.].

Staff and Proxy Views of Multiple Family Member Involvement in Decision Making for Nursing Home Residents With Advanced Dementia.

Decision making for nursing home (NH) residents with Alzheimer disease and related dementias often involves input from multiple family members and NH staff to address goals of care at the end of life. Using data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life research study, a secondary analysis of qualitative data was conducted involving interviews of 144 NH staff and 44 proxies in 14 NHs to examine the perspectives of NH staff and proxies for NH residents with Alzheimer disease and related dementias on the involvement of multiple family members in decision making about end-of-life care decisions. Interviews took place between 2018 and 2021. Nursing home staff and proxies had differing perspectives of the involvement of multiple family members in decision making, with NH staff primarily viewing families as a source of conflict, whereas proxies viewed families as a source of support. Nursing home staff also had differing opinions of their role with families; some attempted to ameliorate conflict, and some did not get involved. Some NH staff felt that Black families had more conflict than White families, indicating unacceptable bias and stereotyping of Black families by NH staff. These findings suggest training and education is needed for NH staff to facilitate better communication with families and to support proxies in end-of-life decision making to address goals of care for NH residents with Alzheimer disease and related dementias.

Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.

BACKGROUND: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. MATERIALS AND METHODS: Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end-of-life care, advance care planning, decision-making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision-making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021. RESULTS: Among 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end-of-life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube-feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race. CONCLUSIONS: This report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility-level factors, which may help reduce these variations.

Sources of stress for family members of nursing home residents with advanced dementia.

The sources of stress for families of nursing home (NH) residents with advanced dementia have not been well described. Semistructured interviews were conducted with 16 family members previously enrolled in the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life study, a prospective cohort of 323 NH residents with advanced dementia and their family members. Questions were asked pertaining to the experience of having a family member in the NH, communication with health-care professionals, surrogate decision making, emotional distress, and recommendations for improvement in care. Transcripts were analyzed using the constant comparative method. The majority of the participants were women (63%), children of the resident (94%), and white (94%). The average age was 62 years. Four themes emerged: (1) inadequate resident personal care, resulting in family member vigilance and participation in care; (2) stress at the time of NH admission; (3) lack of communication with NH physicians; and (4) challenges of surrogate decision making, including the need for education to support advance care planning and end-of-life decisions. Our results support the provision of emotional support to families upon resident admission, education regarding prognosis to guide decision making, improved resident care, and greater communication with health care professionals.

Transitions in dementia care: theoretical support for nursing roles.

There are several predictable transitions in the course of dementia, and care is often provided by family members in the earlier stages. Later stages often include the move to one or more care settings. Important transitions for those with dementia and their families and/or caregivers include the initial diagnosis of dementia; advanced planning for financial concerns and healthcare considerations; driving cessation; managing behavioral symptoms; changes in settings; and preparing for end-of-life. Evidence has emerged to inform the important roles nurses may have in each of the transitions. In this article, we explore the concept of transitional care and how it relates to nursing care of older adults with Alzheimer's disease and other dementias. We begin by briefly describing a middle-range theory of transitions. Next, we describe the dementia trajectory and provide evidence for expanding nursing roles in transitions. Also included are recommendations for research in the area of roles and transitional care.

Nursing Leadership and Palliative Care in Long-Term Care for Residents with Advanced Dementia.

Alzheimer disease and related dementias (ADRD) are irreversible, progressive brain disorders. Many people with ADRD experience the final stage of the disease, advanced dementia, in nursing homes (NHs). Although palliative care, including symptom management and emotional support for caregivers, is advocated for those with advanced dementia, many NH residents experience potentially burdensome interventions, such as feeding tubes, hospital transfers, and intensive rehabilitation. Nurses play a critical role in ensuring high-quality palliative care to residents with advanced dementia. The aim of this article is to raise awareness of the palliative care needs of NH residents with advanced dementia.

Facility Characteristics Associated With Intensity of Care of Nursing Homes and Hospital Referral Regions.

OBJECTIVES: Intensity of care, such as hospital transfers and tube feeding of residents with advanced dementia varies by nursing home (NH) within and across regions. Little work has been done to understand how these 2 levels of influence relate. This study's objectives are to identify facility factors associated with NHs providing high-intensity care to residents with advanced dementia and determine whether these factors differ within and across hospital referral regions (HRRs). DESIGN: Cross-sectional analysis. SETTING AND PARTICIPANTS: 1449 NHs. METHODS: Nationwide 2016-2017 Minimum Data Set was used to categorize NHs and HRRs into 4 levels of care intensity based on rates of hospital transfers and tube feeding among residents with advanced dementia: low-intensity NH in a low-intensity HRR, high-intensity NH in a low-intensity HRR, low-intensity NH in a high-intensity HRR, and a high-intensity NH in a high-intensity HRR. RESULTS: In high-intensity HRRs, high-vs low-intensity NHs were more likely to be urban, lack a dementia unit, have a nurse practitioner or physician (NP or PA) on staff, and have a higher proportion of residents who were male, aged <65 years, Black, had pressure ulcers, and shorter hospice stays. In low-intensity HRRs, higher proportion of Black residents was the only characteristic associated with being a high-intensity NH. CONCLUSIONS AND IMPLICATIONS: These findings suggest that within high-intensity HRRs, there are potentially modifiable factors that could be targeted to reduce burdensome care in advanced dementia, including having a dementia unit, palliative care training for NPs and PAs, and increased use of hospice care.

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic.

The COVID-19 pandemic has placed a tremendous burden on all of society, particularly among vulnerable populations such as people living with dementia and their caregivers. Efforts to understand the impact of the COVID-19 pandemic on those living with dementia are crucial towards addressing needs during the pandemic and beyond. This qualitative descriptive study includes a thematic analysis of 6938 tweets from March 17-24, 2020, that included direct or indirect references to COVID-19 and at least one of the following terms/hashtags: Alzheimer, #Alzheimer, dementia, and #dementia. Five themes were identified: continuing care, finding support, preventing spread of COVID-19, maintaining human rights, and the impact of the pandemic on the daily lives of people living with dementia. People living with dementia and their families faced unique challenges related to caregiving, maintaining social connectedness while trying to follow public health guidelines, and navigating the convergence of COVID-19 and dementia-related stigma. Data from Twitter can be an effective means to understand the impacts of public health emergencies among those living with dementia and how to address their needs moving forward by highlighting gaps in practice, services, and research.

Nursing Home Staff Perceptions of End-of-Life Care for Residents With Advanced Dementia: A Multisite Qualitative Study.

Nursing homes (NHs) are an important site of death for residents with advanced dementia. Few studies have explored the experiences of NH staff about providing end-of-life care for residents with advanced dementia. This study aimed to describe NH staff perceptions on where end-of-life care should be delivered, the role of Medicare hospice care, and their experiences providing end-of-life care to residents with advanced dementia. Data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life study were used to explore the study objectives. Semistructured interviews with 158 NH staff working in 13 NHs across the United States were analyzed. Most NH staff endorsed the NH as a better site of death for residents with advanced dementia compared with a hospital. They expressed mixed perceptions about hospice care. However, regardless of their role, the staff expressed experiencing difficult emotions while providing end-of-life care to residents with dementia because of the close attachments they had formed with them and bearing witness to their decline. The findings show that most NH staff have strong emotional attachments to their dying residents with dementia and prefer to care for them at the NH rather than transfer them to the hospital.