Advance Care Planning in the Context of Dementia: Defining Concordance.

BACKGROUND AND OBJECTIVES: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. RESEARCH DESIGN AND METHODS: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. RESULTS: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. DISCUSSION AND IMPLICATIONS: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

Exploring the intersections of college student poverty, grief, and racial/ethnic identity: a scoping review protocol.

BACKGROUND: College students who experience the negative impact of poverty, such as food, financial, and housing insecurity, are at higher risk for poor academic performance. One recent study examined grief in a college student sample and found students with a diverse racial or ethnic background were more likely to experience prolonged grief disorder, however, did not examine poverty in their sample. To date, no known reviews have examined poverty by racial and ethnic identity and the experience of grief due to the death of a family member or friend, and no reviews have examined how these three factors relate to interventions designed to support student academic performance and degree completion. METHODS: Our aim is to map the primary literature reporting on college students of any age who identify or are identified as non-white racial or ethnic groups who experience poverty and grief due to the death of a family member or friend. The mapping strategy includes extracting the various types of interventional support of academic performance and degree completion delivered from campus or community services in any geographic setting worldwide. We will conduct our scoping review with guidance from the latest version of the JBI Manual for Evidence Synthesis. Utilizing the framework as outlined by Arksey and O'Malley, we will conduct our scoping review with Arksey's five stages: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarizing, and reporting the results. For transparency and reproducibility, we will adhere to the PRISMA reporting guidelines. DISCUSSION: The purpose of this scoping review is to map the primary literature reporting college students, regardless of their age, who belong to non-white racial or ethnic groups and face poverty and grief resulting from the loss of a family member or friend. This analysis includes mapping the various types of intervention and support available both on and off campus, in any global setting, with the aim of enhancing academic performance and facilitating degree completion. The results of this review may inform the further research needed in this area to help prevent poor academic performance and dropout for many vulnerable college students. The results may be of value, particularly to college administrators developing prevention and interventional programs to support college student success. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework ( https://osf.io/enuwt ).

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.

Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.

Experiences of Homeless Recipients of Social Model Hospice Care: A Photovoice Exploration.

Homelessness and caregiver insecurity are barriers to accessing hospice for end-of-life care. Some communities have implemented a community-based social model of hospice care, and reports of its characteristics and outcomes are growing in hospice and homeless literature. This case report explored the experiences of social model hospice recipients using photovoice, a community-based participatory method to photograph meaningful aspects of care. Participants (n = 3) took photos (n = 93), journaled, and participated in semistructured interviews as co-analyzers. Through deductive codes from the literature and inductive analysis of data, 6 themes were identified: having a physical location to receive care, involving the community, having spiritual needs attended to, acknowledging family/family of choice, connecting with animals, and feeling cared for. Participants offered few suggestions to improve care. Social model hospice provided a location for care, funding, and social support to address housing and caregiver insecurity. Results corroborated the social model hospice concept (antecedents, attributes, consequences). Findings add to the growing literature with implications for communities and leaders looking to start or improve care. Results suggest that photovoice may be a feasible method for eliciting firsthand experiences of residents. Findings may guide discussions about patient-reported aspects of care for a more accurate understanding of meaningful social model hospice care.

Posttraumatic growth and life course stress predict dyadic wellbeing among sexual and gender minority (SGM) and non-SGM couples facing cancer.

OBJECTIVE: This study examined: (1) Differences among sexual and gender minority (SGM) and non-SGM couples' life course stress, posttraumatic growth (PTG), individual, and dyadic wellbeing while facing cancer, (2) The predictive ability of PTG and life course stress on wellbeing for each dyad member, and (3) The predictive ability of dyad-level PTG and dyad-level life course stress on dyadic wellbeing. METHODS: Thirty SGM and 30 non-SGM dyads (N = 60) completed measures assessing demographics, life course stress, PTG, individual, and dyadic wellbeing. Regression and multilevel models tested predictive hypotheses. RESULTS: Participants were 56.3 years old on average (SD = 13.6) and were together for 24.2 (SD = 14.9) years. SGM participants reported greater life course stress and higher scores on the Depression, Anxiety, and Stress Scales (DASS-21) than non-SGM participants. A dyad members' higher PTG predicted their partners' higher DASS-21 score, dyad members' higher life course stress predicted their own higher DASS-21 score, and patients' higher life course stress predicted their partners' higher DASS-21 score. Greater dyadic PTG predicted greater dyadic wellbeing. CONCLUSIONS: SGM and non-SGM couples experience PTG equally despite SGM couples' greater life course stress and higher DASS-21 scores. Future research is needed to explore how PTG may affect individuals and couples differently.

Communication Disparities between Nursing Home Team Members.

Optimal care in nursing home (NH) settings requires effective team communication. Certified nursing assistants (CNAs) interact with nursing home residents frequently, but the extent to which CNAs feel their input is valued by other team members is not known. We conducted a cross-sectional study in which we administered a communication survey within 20 Utah nursing home facilities to 650 team members, including 124 nurses and 264 CNAs. Respondents used a 4-point scale to indicate the extent to which their input is valued by other team members when reporting their concerns about nursing home residents. We used a one-way ANOVA with a Bonferroni correction. When compared to nurses, CNAs felt less valued (CNA mean = 2.14, nurse mean = 3.24; p < 0.001) when reporting to physicians, and less valued (CNA mean = 1.66, nurse mean = 2.71; p < 0.001) when reporting to pharmacists. CNAs did not feel less valued than nurses (CNA mean = 3.43, nurse mean = 3.37; p = 0.25) when reporting to other nurses. Our findings demonstrate that CNAs feel their input is not valued outside of nursing, which could impact resident care. Additional research is needed to understand the reasons for this perception and to design educational interventions to improve the culture of communication in nursing home settings.

The Development and Validation of a Communication Survey Instrument for Long-term Care Staff.

Information transfers in long-term care (LTC) settings between and among providers, staff, residents, and family caregivers are often fragmented. In order to identify training needs to improve communication, a survey instrument was developed and refined to assess the self-efficacy of LTC staff in communicating with staff, providers, residents, and caregivers. This 11-item survey instrument, based on a literature review, covered four key concepts (mutual respect, recognizing and responding to sensory deficits, limited health literacy, and changes in condition) relevant to communicating health information in LTC settings. Ten content experts evaluated each survey item using a 4-point scale. The content validity of the survey was established by using the content validity index to assess results at the item and scale levels. All items scored 0.90 or greater and were retained. Future work should entail broad-scale validation and testing of this survey across the United States. By assessing the self-efficacy of LTC staff in communicating with the interprofessional team, leadership teams can design personalized interprofessional continuing education activities aimed at improving communication skills. [J Contin Educ Nurs. 2022;53(3):123-130.].

If we knew then what we know now: The preparedness experience of pre-loss and post-loss dementia caregivers.

We evaluated the relationship between grief preparedness and grief experience in 106 family caregivers anticipating or who had experienced the death of a family member with dementia. Using a phenomenological lens to discern a process of meaning-making in narratives, we found preparation that included positive construction of memories, death as the end of suffering, relationship resolution, and shared construction of meaning were associated with positive grief. Those caregivers who experienced the family member's decline as traumatic, caregiver role loss, unavailable support, and difficulties creating a new life reported inadequate death preparation, and difficulty making meaning of the illness and death.

Pre-loss group therapy for dementia family care partners at risk for complicated grief.

INTRODUCTION: Dementia family caregiving may span more than a decade and places many family care partners (CPs) at risk for poor bereavement outcomes; estimates of complicated grief in bereaved dementia family CPs range from 10% to 20%. We adapted our efficacious complicated grief group therapy intervention for bereaved dementia caregivers for soon-to-be bereaved dementia CPs at risk for complicated grief to facilitate healthy death preparedness and eventual bereavement-pre-loss group therapy (PLGT). METHODS: In this Stage IB pilot intervention study, we implemented and evaluated PLGT in three psychotherapy group cohorts with family CPs at-risk for complicated grief whose person living with dementia (PLWD) had a life expectancy of 6 months or less and resided in a nursing home. PLGT is a 10-session multi-modal psychotherapy administered by social workers. RESULTS: Participants in PLGT realized significant improvement in their pre-loss grief and in reported preparedness for the death of their family member, and participants evidenced lowered pre-loss grief severity and improvement, as measured by facilitators. Participants also realized significant improvement in meaning making, particularly as a sense of peace and a reduction of loneliness. DISCUSSION: The process and treatment elements of the PLGT intervention affirm the value of specialized care for those dementia family CPs at risk for complicated grief, as the PLGT groups demonstrated a steady progression toward improvement collectively and individually. PLGT participants realized statistical and clinical improvement across pre-loss grief measures suggesting that their risk for complicated grief risk was mitigated, and they were better prepared for the death of their PLWD.

Resilience in Bereaved Caregivers of Persons With Dementia.

The purpose of the current study was to identify characteristics of resilience using surveys in 50 bereaved caregivers for persons with dementia who lost their care recipient in the past 6 months. Surveys were reviewed and sorted as demonstrating a resilient grieving process or a problematic grieving process. Resilience was defined as the ability to adapt in a positive direction, with adequate support resources in place despite destabilizing experiences. Following initial review and sorting, 19 resilient surveys were coded and grouped according to phrases. Using the qualitative descriptive analysis process, five themes of resilience were derived from these surveys. Themes of resilience included: Relationships, Spirituality, Formal Support, Honor, and Relief. The use of these themes was noted to be supportive of a positive grief experience. The information provided in the current study serves to inform clinical nurses on resilient attributes to support bereaved caregivers for persons with dementia to improve grief outcomes. [Journal of Gerontological Nursing, 46(1), 30-36.].

Mindfulness-Based Stress Reduction Versus a Health Enhancement Program in the Treatment of Urge Urinary Incontinence in Older Adult Women: A Randomized Controlled Feasibility Study.

Current treatment practices for older adult women with urge urinary incontinence (UUI) remain insufficient and ineffective. A randomized controlled feasibility trial was developed to evaluate three determinants of research feasibility and three determinants of intervention feasibility when comparing mindfulness-based stress reduction (MBSR) with a health enhancement program (HEP) in older adult women with UUI. Participants were recruited from the university health system, county senior centers, and community sites. Twenty-five postmenopausal women (mean age = 74 years) were randomized into MBSR treatment conditions or HEP comparison conditions for an 8-week intervention. Participants remained blinded to conditions. Research feasibility determinants were measured as recruitment, retention, and treatment delivery; intervention feasibility determinants were measured as acceptability, tolerability, and client receipt/enactment. Feasibility determinants established in the research literature as essential to intervention evaluation were recorded and evaluated throughout the current study. All six feasibility determinants confirmed positive results in the enrolled population. The use of MBSR and HEP as the active comparison to treat UUI in older adult women proved feasible in this trial. The results warrant the design of a larger-scale, multisite trial to study the efficacy of MBSR in treating UUI in older adult women. TARGETS: Older adult women with high incidence of UUI. INTERVENTION DESCRIPTION: MBSR treatment conditions or HEP comparison conditions. MECHANISMS OF ACTION: Research and intervention feasibility determinants. OUTCOMES: The use of MBSR and HEP as the active comparison to treat UUI in older adult women proved feasible in this trial. [ Research in Gerontological Nursing, 12(6), 285-297.].

A Comparison of the Influence of Anticipated Death Trajectory and Personal Values on End-of-Life Care Preferences: A Qualitative Analysis.

OBJECTIVES: We examined anticipated preferences for end-of-life (EOL) care in healthy older adults in the context of various terminal disease scenarios to explore the relationship between personal values and diseases and conditions that would influence EOL care choices. METHODS: Qualitative Descriptive Analysis was used to derive themes and the relationship between EOL preference themes and personal value themes in 365 respondents in a national sample of healthy older adults who completed a survey on their anticipated preferences for end-of-life (EOL) care. RESULTS: Reluctance to burden close others was the most frequently voiced personal value across all conditions affecting EOL preferences, followed by the personal value of quality of life. Concern about whether one's wishes would be honored was more commonly voiced in the context of hypothetical, prospective terminal cancer than in neurological conditions. Respondents who voiced desire for autonomy in how they would die clearly attributed extreme pain as the primary influence on EOL preferences. CONCLUSIONS: Comprehensive assessment of patient personal values should include consideration of particular chronic disease scenarios and death trajectories to fully inform EoL preferences. CLINICAL IMPLICATIONS: Because personal values do influence EOL preferences, care should be taken to ascertain patient values when presenting diagnoses, prognoses, and treatment options. In particular, patients and families of patients with progressive neurological diseases will likely face a time when the patient cannot self-represent EOL wishes. Early discussion of values and preferences, particularly in the context of cognitive disease is vital to assure patient-directed care.

The role of theory in understanding grief.

As the tandem fields of bereavement care and research have evolved, so too has a keener appreciation of the role of theory in advancing both. This article succinctly summarizes the function of theory in directing investigation and intervention in grief and grief therapy and describes Meaning Reconstruction as one exemplar of this bootstrapping process, leading to evidence-based conceptual refinements and creative contributions to clinical practice.

The Impact of the End-of-Life Nurse Education Consortium on Attitudes of Undergraduate Nursing Students Toward Care of Dying Patients.

This mixed methods study explored the impact of the End-of-Life Nursing Education Consortium (ELNEC)-Undergraduate Curriculum on perceived preparedness of undergraduate nursing students in the care of dying patients and the relationship between personal loss experience and undergraduate nursing students' attitudes regarding the ELNEC-Undergraduate Curriculum. Of the 36 undergraduate nursing students who completed ELNEC, 24 reported a personal loss of a close family member or friend to death and 12 reported no loss. Findings confirmed the overall positive impact and acceptability of ELNEC, but this effect was observed differently between students with and without previous loss. Students with personal loss were more aware of the challenges of end-of-life care before taking ELNEC and incorporated the content into a greater sense of preparedness. Study recommendations include placing ELNEC within didactic instruction by well-prepared faculty, creating simulation debrief groups composed of both students with and without loss, and faculty attention to the loss experiences of students.

End-of-Life Education and Discussions With Assisted Living Certified Nursing Assistants.

In previous work, the current researchers examined attitudes and experiences of certified nursing assistants (CNAs) providing end-of-life (EOL) care in an assisted living facility (ALF). Results showed that 70% of participating CNAs felt unprepared to provide EOL care, largely due to not having received prior EOL care education within their schools or workplaces. Therefore, the goal of the current study was to implement and evaluate EOL and postmortem education to ALF CNAs. A focus group of 14 CNAs within an ALF was provided EOL education pertaining to the physiological and psychological changes observed in patients nearing EOL and postmortem care. Immediately following training, CNAs participated in a 30-minute focus group in which they discussed their experiences and educational needs regarding EOL care. Responses were recorded, transcribed, and analyzed for common themes using descriptive qualitative inquiry. All participants reported that CNA programs need to place greater emphasis on teaching EOL care, and 80% desired continuing education on EOL care through their employers. There is a need for CNAs to receive EOL care education to understand the psychological and physical signs and symptoms associated with the dying process to provide best practices in postmortem care. [Journal of Gerontological Nursing, 44(6), 41-48.].

State of the Science: Interprofessional Approaches to Aging, Dementia, and Mental Health.

Interprofessional education (IPE) is essential to develop the healthcare workforce of the future. Geriatrics healthcare professionals have long championed innovations in IPE and patient care, but there is increased urgency to address challenges in aging, dementia, and geriatric mental health in America. In 2010, the Partnership for Health in Aging multidisciplinary competencies and a related position statement in the Journal of the American Geriatrics Society addressed interdisciplinary team (IDT) training in geriatrics. The position statement reported that training in higher education, academic, and continuing education settings has not been sufficiently responsive to workforce needs. In recent years, health professions educators and health systems leaders have increasingly recognized that IPE should be integrally linked with, and performed within, emerging models of team-based, value-driven health care. In this way, IPE will align with learning healthcare systems' pursuit of the Quadruple Aim: improving patient experience, provider experience, and the health of populations, and reducing per capita health care costs. Backed by decades of developing effective team care models and the skill set needed to care for older adults with complex needs, geriatrics healthcare providers from multiple disciplines are uniquely positioned to lead learning healthcare systems in a new effort to develop, implement, and sustain IPE and practice models congruent with these Aims. We provide recommendations for health professions educators, healthcare systems leaders, and policymakers to realize the potential of IPE and interprofessional collaborative practice (IPCP) to improve the health of all Americans in aging, dementia, and mental health.

Individual versus interprofessional team performance in formulating care transition plans: A randomised study of trainees from five professional groups.

Health professions trainees' performance in teams is rarely evaluated, but increasingly important as the healthcare delivery systems in which they will practice move towards team-based care. Effective management of care transitions is an important aspect of interprofessional teamwork. This mixed-methods study used a crossover design to randomise health professions trainees to work as individuals and as teams to formulate written care transition plans. Experienced external raters assessed the quality of the written care transition plans as well as both the quality of team process and overall team performance. Written care transition plan quality did not vary between individuals and teams (21.8 vs. 24.4, respectively, p = 0.42). The quality of team process did not correlate with the quality of the team-generated written care transition plans (r = -0.172, p = 0.659). However, there was a significant correlation between the quality of team process and overall team performance (r = 0.692, p = 0.039). Teams with highly engaged recorders, performing an internal team debrief, had higher-quality care transition plans. These results suggest that high-quality interprofessional care transition plans may require advance instruction as well as teamwork in finalising the plan.

The transformation of the meaning of death in complicated grief group therapy for survivors of suicide: A treatment process analysis using the meaning of loss codebook.

We examined the therapeutic process of grief change in survivors of suicide participating in complicated grief group therapy (CGGT) using the meaning of loss codebook (MLC). Complicated grief group therapy is a multimodal group psychotherapy designed to restore normal grieving in persons with complicated grief. Using video data, we evaluated transition points in psychotherapy associated with meaning reconstruction: retelling the narrative of the death, having an imaginal conversation with the deceased, and memory integration. The MLC codes captured most of the voiced statements of participants, provided a valuable lens for articulating the therapeutic process, and affirmed that CGGT facilitated effective grief.

The Process of Change in Complicated Grief Group Therapy for Bereaved Dementia Caregivers: An Evaluation Using the Meaning of Loss Codebook.

Caring for a person with dementia has adverse health and mental health effects that, for 9-25% of caregivers, persist as complicated grief (CG). For bereaved dementia caregivers unable to satisfactorily grieve, specialized Complicated Grief Group Therapy (CGGT) can restore healthy grief. We investigated therapeutic change in CGGT participants, using an adapted version of the Gillies' Meaning of Loss Codebook. Participants demonstrated positive gains in 16 thematic areas, notably in moving on with life, summoning pleasant memories, and ascribing bad memories to disease rather than decedent. Meaning transitioned from negative to positive interpretations of the death over the course of treatment.

Caring to Learn and Learning to Care.

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well-documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer-care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners.