A Delphi Approach to Define Lucid Episodes in People Living With Dementia.

PURPOSE: Lucid episodes (LEs: unexpected episodes of spontaneous, meaningful, and relevant communication or behavior) in Alzheimer disease and related dementias are a new area of scientific inquiry that lacks clinical consensus and require more conceptual attention. METHODS: We aimed to measure consensus from an expert group on: (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical context to LEs; and (3) interpretation of LEs. PATIENTS: We convened 13 experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) to identify elements of LEs. RESULTS: Experts provided a range of opinions on medical and clinical explanations and questions to understand LEs. Consensus on LEs when presented with clinical vignettes was not reached. Panelists highlighted key medical and contextual factors needed to make a definitive judgement about LEs. CONCLUSION: There is variability in how LEs are interpreted by clinical experts, which complicates the identification of LEs in Alzheimer disease and related dementias.

Developing and describing a typology of lucid episodes among people with Alzheimer's disease and related dementias.

INTRODUCTION: This study examined lucid episodes among people living with late-stage Alzheimer's disease and related dementias (PLWD) and then developed a typology of these episodes to help characterize them. METHODS: Family caregivers of PLWD provided information about witnessed episodes, including proximity to death, cognitive status, duration, communication quality, and circumstances prior to lucid episodes on up to two episodes (caregiver N = 151; episode N = 279). Latent class analysis was used to classify and characterize empirically distinct clusters of lucid episodes. RESULTS: Four lucid episode types were identified. The most common type occurred during visits with family and among PLWD who lived > 6 months after the episode. The least common type coincided with family visits and occurred within 7 days of the PLWD's death. DISCUSSION: Findings suggest that multiple types of lucid episodes exist; not all signal impending death; and some, but not all, are precipitated by external stimuli.

Real-World Prevalence of Type 2 Diabetes Remission in a U.S. Insured Population Using a Large Administrative Claims Database.

Objective: A 2021 international consensus statement defined type 2 diabetes remission as A1C <6.5% measured at least 3 months after cessation of glucose-lowering therapy. We aimed to investigate whether retrospective claims-based data can assess remission based on this definition, whether three increasingly strict alternative definitions affect the prevalence of remission and characteristics of remission cohorts, and how cohorts with and without sufficient data to assess for remission differ. Research design and methods: We used de-identified administrative claims from commercially insured and Medicare Advantage members, enriched with laboratory values, to assess diabetes remission. We used alternative glycemic, temporal, and pharmacologic criteria to assess the sensitivity of remission definitions to changes in claims-based logic. Results: Among 524,076 adults with type 2 diabetes, 185,285 (35.4%) had insufficient additional laboratory and/or enrollment data to assess for remission. While more likely to be younger, these individuals had similar initial A1C values and geographical distribution as the 338,791 (64.6%) assessed for remission. Of those assessed for remission, 10,694 (3.2%) met the 2021 consensus statement definition. The proportion of individuals meeting the three alternative definitions ranged from 0.8 to 2.3%. Across all criteria, those meeting the remission definition were more likely to be female, had a lower initially observed A1C, and had a higher prevalence of bariatric surgery. Conclusion: This study demonstrates the feasibility of laboratory-value enriched claims-based assessments of type 2 diabetes remission. Establishing stable claims-based markers of remission can enable population assessments of diabetes remission and evaluate the association between remission and clinical outcomes.

Temporal Patterns of High-Spend Subgroups Can Inform Service Strategy for Medicare Advantage Enrollees.

BACKGROUND: Most healthcare costs are concentrated in a small proportion of individuals with complex social, medical, behavioral, and clinical needs that are poorly met by a fee-for-service healthcare system. Efforts to reduce cost in the top decile have shown limited effectiveness. Understanding patient subgroups within the top decile is a first step toward designing more effective and targeted interventions. OBJECTIVE: Segment the top decile based on spending and clinical characteristics and examine the temporal movement of individuals in and out of the top decile. DESIGN: Retrospective claims data analysis. PARTICIPANTS: UnitedHealthcare Medicare Advantage (MA) enrollees (N = 1,504,091) continuously enrolled from 2016 to 2019. MAIN MEASURES: Medical (physician, inpatient, outpatient) and pharmacy claims for services submitted for third-party reimbursement under Medicare Advantage, available as International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) and National Drug Codes (NDC) claims. KEY RESULTS: The top decile was segmented into three distinct subgroups characterized by different drivers of cost: (1) Catastrophic: acute events (acute myocardial infarction and hip/pelvic fracture), (2) persistent: medications, and (3) semi-persistent chronic conditions and frailty indicators. These groups show different patterns of spending across time. Each year, 79% of the catastrophic group dropped out of the top decile. In contrast, 68-70% of the persistent group and 36-37% of the semi-persistent group remained in the top decile year over year. These groups also show different 1-year mortality rates, which are highest among semi-persistent members at 17.5-18.5%, compared to 12% and 13-14% for catastrophic and persistent members, respectively. CONCLUSIONS: The top decile consists of subgroups with different needs and spending patterns. Interventions to reduce utilization and expenditures may show more effectiveness if they account for the different characteristics and care needs of these subgroups.

A hybrid method of healthcare delivery research and human-centered design to develop technology-enabled support for caregivers of hematopoietic stem cell transplant recipients.

Health information technology (HIT) is a widely recognized strategy to encourage cancer patients and caregivers to participate in healthcare delivery in a sustainable and cost-effective way. In the context of autologous hematopoietic cell transplant (HSCT), HIT-enabled tools have the potential to effectively engage, educate, support, and optimize outcomes of patients and caregivers in the outpatient setting. This study sought to leverage human-centered design to develop a high-fidelity prototype of a HIT-enabled psychoeducational tool for HSCT caregivers. Phase 1 focuses on breadth and depth of information gathering through a systematic review and semi-structured interviews to determine optimal tool use. Phase 2 engages in human-centered design synthesis and visualization methods to identify key opportunities for the HIT design. Phase 3 employs human-centered design evaluation, engaging caregivers to respond to low-fidelity concepts and scenarios to help co-design an optimal tool for HSCT. This study outlines a hybrid method of healthcare delivery research and human-centered design to develop technology-enabled support for HSCT caregivers. Herein, we present a design methodology for developing a prototype of HIT-enabled psychoeducational tool which can be leveraged to develop future eHealth innovations to optimize HSCT.

Feasibility of a Digital Storytelling Intervention for Hematopoietic Cell Transplant Patients.

Patients undergoing hematopoietic cell transplantation (HCT) are at risk for psychological and social impairment given the rigors and multiple sequelae of treatment. The purpose of this pilot study was to test the feasibility of a digital storytelling (DS) intervention for HCT patients, and to examine limited efficacy of the intervention relative to control arm on psychological distress and perceived social support. Adult HCT patients (n = 40, M age = 59.2 years) were enrolled immediately post-HCT and randomly assigned to either DS intervention or information control (IC). DS participants viewed four 3-min personal, emotionally rich digital stories, and IC condition participants viewed four videos containing information about post-HCT care. Feasibility regarding recruitment, enrollment efforts, and change scores from pre- to post-intervention (Δs) on depression, anxiety, and perceived social support were tracked. Fifty-four (51.4%) of 105 eligible patients consented. Forty (74%) patients completed the intervention. All but one completed the post-intervention assessments demonstrating that HCT patients can be recruited and retained for this intervention. On average, perceived social support increased for the DS group (Δ = 0.06) but decreased for the IC group (Δ = - 0.05). Anxiety and depression improved over time in both conditions. Viewing digital stories with content evoking emotional contexts similar to one's own health challenges may improve perceptions of social support among HCT patients. How DS can improve perceived social support for both short-term and longer-term sustained effects in a longitudinal study is an area ripe for additional investigation.

Improving Transitions in Care for Patients and Family Caregivers Living in Rural and Underserved Areas: The Caregiver Advise, Record, Enable (CARE) Act.

In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care. It may fall short, however, in addressing the unique needs of family caregivers living in rural and underserved areas. We contend that to realize the intended safety, cost, and care quality benefits of the CARE Act, especially for those living in rural and underserved areas, states need to expand the Act's scope. We provide three recommendations: 1) modify hospital information systems to support the care provided by family caregivers; 2) require assessments of family caregivers that reflect the challenges of family caregiving in rural and underserved areas; and 3) identify local resources to improve discharge planning. We describe the rationale for each recommendation and the potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.

Key Points:1. Recent state laws aim to support family caregivers of hospitalized patients.2. These laws do not account for the unique needs of rural caregivers.3. Expanding laws to address rural caregiver needs may improve patient outcomes.

Adult day services and dementia caregivers' daily affect: the role of distress response to behavioral and psychological symptoms of dementia.

Adult day services (ADS) provide respite for dementia caregivers and directly reduce exposure to behavioral and psychological symptoms of dementia (BPSD). This study examines the psycho-behavioral mechanism on how daily ADS use may benefit caregivers' daily affect through its impact on the distress associated with BPSD stressor exposure. The sample consists of dementia caregivers (N = 173) who participated in an ADS intervention across 8 days. Multilevel structural equation modeling was conducted to examine the within- and between-person mediating effects of BPSD distress on the direct associations between daily ADS use and daily negative and positive affect. ADS days were associated with lower daily negative affect and higher daily positive affect; the significant within-person effect of ADS use on daily affect was mediated by daily BPSD distress. Findings highlight the association between daily ADS use and caregiver affective well-being. This understanding is important for designing respite and other interventions to help dementia caregivers manage the daily stress of caregiving.

Feasibility and Acceptability of a 3-Day Group-Based Digital Storytelling Workshop among Caregivers of Allogeneic Hematopoietic Cell Transplantation Patients: A Mixed-Methods Approach.

Family caregivers are essential partners for patients undergoing hematopoietic cell transplantation (HCT). The caregiving role is emotionally, physically, and financially demanding. Intervention efforts to provide relief for caregiver stress during HCT are highly warranted. Storytelling interventions are accruing evidence for efficacy in therapeutic contexts. The purpose of this study was to conduct a 3-full consecutive day digital storytelling (DST) workshop to build knowledge on caregivers' lived experiences during HCT, to pilot test DST with a small group of HCT caregivers, and to demonstrate feasibility and acceptability using qualitative and quantitative measures. Six adult caregivers of allogeneic HCT recipients (mean age, 60.2 years) attended a 3-day DST program (66% female, 83% white). All successfully created their personal audiovisual digital story (2 to 3 minutes long) and completed a survey. All participants rated the DST workshop as highly acceptable and therapeutic (mean score 5, on a scale of 1 to 5). Group discussions and interviews with participants further demonstrated high satisfaction and acceptability of the workshop format, setting, process, and structure. The survey results showed decreases in anxiety and depression from before to after the DST workshop with all participants showing change in the expected direction. This study demonstrates the feasibility and acceptability of a 3-day DST workshop as a distress-relieving tool for HCT caregivers. Future research is needed to test the efficacy of DST relative to a control condition.

Longitudinal trajectories of subjective care stressors: the role of personal, dyadic, and family resources.

OBJECTIVES: Stressors are critical to the caregiver stress process, yet little work has examined resources that contribute to longitudinal changes in subjective stressors. The present study examines a variety of factors that contribute to changes in subjective stressors across time. METHOD: Dementia caregivers (N = 153) completed an in-person interview and eight daily telephone interviews at baseline, and follow up interviews at 6 and 12 months. Growth curve analyses examine how care- and non-care stressors, respite, dyadic relationship quality, family support/conflict and care transitions (e.g. nursing home placement) are associated with changes in role overload and role captivity across 12 months. RESULTS: Caregivers who transitioned out of their role had higher overload and captivity at baseline. Among caregivers who transitioned out of caregiving, higher captivity at baseline was associated with declines in captivity and overload; more non-care stressors at baseline was linked to increased captivity and greater overload across time. Adult day service use and family support were associated with lesser captivity over time; taking more breaks from caregiving was linked to lower overload. Higher dyadic relationship quality was associated with lower captivity and overload. CONCLUSION: Findings contribute to caregiver intervention efforts by highlighting important resources associated with subjective stressors across time.

The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers.

OBJECTIVE: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration. DESIGN: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT). SETTING: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers. PARTICIPANTS: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation. RESULTS: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. CONCLUSIONS: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.

Recommendations from the Salzburg Global Seminar on Rethinking Care Toward the End of Life.

OBJECTIVE: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS. DESIGN: Featured sessions focused on critical issues of end of life care led by key stakeholders, physicians, researchers, and other global leaders in palliative care. Sessions spanned across several critical themes including: patient/family/caregiver engagement, integrating health and community-based social care, eliciting and honoring patient preferences, building an evidence base for palliative care, learning from system failures, and delivering end of life care in low-resource countries. Sessions were followed by intensive collaborative discussions which helped formulate key recommendations for rethinking and ultimately advancing end of life care. RESULTS: Prominent lessons learned from SGS include learning from low-resource countries, development of evidence-based quality measures, implementing changes in training and education, and respecting the personal agency of patients and their families. CONCLUSION: There is a global need to rethink, and ultimately revolutionize end of life care in all countries. This paper outlines key aspects of end of life care that warrant explicit improvement through specific action from key stakeholders.

Qualitative study of challenges of caring for a person with heart failure.

Heart failure (HF) is a chronic health condition that causes significant morbidity among older adults, many of whom receive support and care from an informal caregiver. Caregiving is a difficult role with many responsibilities and challenges. An in-depth understanding of these challenges is necessary to develop services, resources, and interventions for HF caregivers. The goal of this study was to qualitatively ascertain the most significant challenges facing HF caregivers. We conducted semi-structured interviews with 16 caregivers of a person with HF (PHF). Content analysis revealed challenges rooted within the PHF (negative affect, resistant behavior, independence, and illness) Caregiver (balancing employment, lack of support, time, and caregiver health) and Relational level (PHF/caregiver dyadic relationship and other relationships). These findings can be used to inform interventions and support services for HF caregivers.

Life Problems and Perceptions of Giving Support: Implications for Aging Mothers and Middle-Aged Children.

Giving support may be a stressful or rewarding experience, little is known about how family members perceive giving support amidst problems or crises. Using a sample of 226 mother-child dyads (mother mean age = 75.04; child mean age = 49.57), we examine how mothers and their middle-aged children perceive giving support in the context of life problems. Actor-partner interdependence models tested whether associations between problems and perceptions of support are moderated by frequency of support given and if associations were stronger for daughters or sons. Children perceived giving support to their mother as more stressful when they had more of their own problems and gave high levels of support. Daughters, but not sons, considered helping their mother more stressful when their mother had more problems and they gave high levels of support. Distinctions between mother-son and mother-daughter dyads demonstrate the merit of a dyadic approach to understanding mother-child relationships.

Exploring the benefits of respite services to family caregivers: methodological issues and current findings.

OBJECTIVES: There is growing emphasis on empirical validation of the efficacy of community-based services for older people and their families, but research on services such as respite care faces methodological challenges that have limited the growth of outcome studies. We identify problems associated with the usual research approaches for studying respite care, with the goal of stimulating use of novel and more appropriate research designs that can lead to improved studies of community-based services. METHOD: Using the concept of research validity, we evaluate the methodological approaches in the current literature on respite services, including adult day services, in-home respite and overnight respite. RESULTS: Although randomized control trials (RCTs) are possible in community settings, validity is compromised by practical limitations of randomization and other problems. Quasi-experimental and interrupted time series designs offer comparable validity to RCTs and can be implemented effectively in community settings. CONCLUSION: An emphasis on RCTs by funders and researchers is not supported by scientific evidence. Alternative designs can lead to development of a valid body of research on community services such as respite.

Using spontaneous commentary of nursing home residents to develop resident-centered measurement tools: A case study.

Nursing home (NH) residents routinely complete surveys that assess their health, well-being, preferences, and care needs. Such surveys reveal important information, however, are largely based on the concerns of providers as opposed to the concerns of residents. Thus, researchers must enhance efforts to ensure that these surveys are guided by the priorities, needs, and concerns of residents. We present a case study to demonstrate how spontaneous commentary of NH residents holds particular efficacy for ensuring that measurement tools are guided by the needs, concerns, and priorities of residents. Spontaneous comments from NH residents (N = 370) collected as part of a study developing the Preferences for Everyday Living Inventory for NH residents (PELI-NH) were used to refine the PELI-NH across key phases of measurement development. This work demonstrates how the spontaneous commentary of NH residents may contribute to the refinement of NH measurement tools, and allow researchers to base these tools on the needs and priorities of NH residents.

THE BURDEN ON DEMENTIA CAREGIVERS: How Can Communities and Health Care Organizations Help?

Family members are integral to the care, safety and overall well-being of persons with Alzheimer's disease and related dementias. Being a caregiver is often associated with significant isolation as well as emotional, psychosocial and financial burden. In recognition of the toughness of this job and the increasing prevalence of dementia, there has been growing momentum among public policy makers and within communities and the health care system to address the challenges caregivers face. This article describes efforts in Minnesota communities to do so. The authors make recommendations for communities and health care systems.

Health Care Preferences Among Nursing Home Residents: Perceived Barriers and Situational Dependencies to Person-Centered Care.

Although much research has examined end-of-life care preferences of nursing home (NH) residents, little work has examined resident preferences for everyday health care. The current study conducted interviews with 255 residents recruited from 35 NHs. Content analysis identified barriers (i.e., hindrances to the fulfillment of resident preferences) and situational dependencies (i.e., what would make residents change their mind about the importance of these preferences) associated with preferences for using mental health services, choosing a medical care provider, and choosing individuals involved in care discussions. Barriers and situational dependencies were embedded within the individual, facility environment, and social environment. Approximately one half of residents identified barriers to their preferences of choosing others involved in care and choosing a medical care provider. In contrast, the importance of mental health services was situationally dependent on needs of residents. Results highlight opportunities for improvement in practice and facility policies that promote person-centered care. [Journal of Gerontological Nursing, 42(2), 11-16.].

The Intersection of Successful Aging and Family Caregiving.

For the millions of older adults who rely on the support of a family caregiver, successful aging is not an individual achievement but a cooperative process between a care receiver and a caregiver. Yet, family caregivers are rarely incorporated into theoretical models of successful aging. Family caregivers also play an essential role in recent healthcare delivery movements that seek to better align care delivery with successful aging. Greater reliance on family caregivers by the US healthcare system is occurring as an increasingly vocal constituency is tasking policymakers with developing and implementing federal and state health policies that would help build the national infrastructure needed to support them. This paper provides a critical discussion of how family caregivers actualize successful aging for older adults. We highlight the key role of family caregivers in healthcare delivery innovations aimed at facilitating successful aging and discuss policies that support family caregivers. As successful aging continues to evolve as a dominating framework in the literature, we conclude with key recommendations for how research, policy, and practice efforts in successful aging can be more inclusive and supportive of family caregivers.

Integrating family caregivers in older adults' hospital stays: a needed cultural shift.

OBJECTIVES: This study aimed to examine perceived barriers and facilitators to caregiver inclusion in the hospital care of older adult family members or friends through the perspectives of (1) hospitalized older adults, (2) caregivers of a hospitalized older adult, (3) healthcare clinicians, and (4) policymakers. METHODS: This qualitative descriptive exploratory study utilized semi-structured interviews with N = 24 participants and was analyzed using a framework method. RESULTS: Eight codes arose that were categorized into four domains guided by the Social Ecological Model. Individual-level factors were determined both for the caregiver and for the clinician. Relationship-level factors were revealed pertaining to communication style and method. Hospital-level factors included hospital environment and resources. Societal-level factors included healthcare climate and policies. DISCUSSION: Findings indicated that hospital workflows and policies inadequately support family caregivers. This study highlights potential solutions to caregivers' integration into hospital workflows.