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.

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.

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.

Caregiver appraisals of lucid episodes in people with late-stage Alzheimer's disease or related dementias.

Introduction: Little is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL). Methods: In an electronic, cross-sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A-LIST®, participants who reported witnessing an EL were asked how positive and stressful ELs were, if they made or changed decisions based on an EL, and what resources they sought out to explain ELs. Results: Caregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs. Discussion: These exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.

Provider perspectives on integrating family caregivers into patient care encounters.

OBJECTIVE: To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty. DATA SOURCES/SETTING: Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona. STUDY DESIGN: This was a qualitative study using data collected from one-on-one, semi-structured interviews with physicians. DATA COLLECTION: By using purposeful "maximum variation" sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach. PRIMARY FINDINGS: Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available. CONCLUSIONS: Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

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.

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.

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.

A Preference-Based Model of Care: An Integrative Theoretical Model of the Role of Preferences in Person-Centered Care.

Knowledge of individuals' everyday preferences is a cornerstone of person-centered care (PCC). Initial evidence demonstrates the positive impact of honoring preferences in care for older adults receiving long-term services and supports (LTSS). Yet, the mechanisms through which preference-based care affects individual well-being remain poorly understood. This article proposes a theoretical model of PCC entitled the Preference-Based Model of Care that integrates the Theory of Human Motivation, Self-determination Theory, the Competence-Press Model of person and environment fit, the Living Systems Framework, and the Broaden-and-Build theory of positive emotions to deepen our understanding of the processes through which preference-based care affects well-being among older adults receiving LTSS. The Preference-Based Model of Care illustrates how goal-directed behaviors facilitate need fulfillment through the expression of individual preferences and how these behaviors mediate the relationship between person-environment fit and affect balance within a particular social, cultural, and political context. The Preference-Based Model of Care can advance research on PCC in LTSS and can inform LTSS clinical practice guidelines for older adults, regardless of functional or cognitive capacity.

Integrating Family Caregivers of People With Alzheimer's Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer's disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers (n = 42), three included non-spousal caregivers (n = 36), and one included people with MCI (n = 15). Seven potential best practices were identified, including the following: "acknowledge caregivers' role and assess unmet needs and capacity to care" and "communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers." Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

Aging Parents' and Middle-Aged Children's Evaluations of Parents' Disability and Life Problems.

This study examined discrepancies in aging parents' and middle-aged children's evaluations of aging parents' problems and how these discrepancies were associated with relationship characteristics. Using data from the Family Exchanges Study (dyad N=331), discrepancies in the parents' disabilities and life problems reported by parents and their offspring were examined. Children reported a greater number of disabilities and life problems in their parents' lives than parents did. The discrepancy in the number of disabilities was associated with the frequency of phone contact, but not the frequency of in-person contact between generations. Findings confirm the gap in the evaluations of parents' problems between generations, indicating that children may overestimate their parents' problems, whereas parents may underreport their own problems. Frequent phone calls between aging parents and middle-aged children seem to play a positive role in conveying aging parents' problems. The gap in knowledge of parents' problems may lead to unmet needs and/or undesirable support exchanges between parents and offspring. Future research needs to consider both generations' reports and to develop reliable methods to assess parents' problems.

Health Information-Seeking Behaviors of Family Caregivers: Analysis of the Health Information National Trends Survey.

BACKGROUND: The growing population of aging adults relies on informal caregivers to help meet their health care needs, get help with decision making, and gather health information. OBJECTIVE: The objective of this study was to examine health information-seeking behaviors among caregivers and to identify caregiver characteristics that contribute to difficulty in seeking health information. METHODS: Data from the Health Information National Trends Survey 5, Cycle 1 (N=3181) were used to compare health information seeking of caregivers (n=391) with noncaregivers (n=2790). RESULTS: Caregivers sought health information for themselves and others using computers, smartphones, or other electronic means more frequently than noncaregivers. Caregivers born outside of the United States reported greater difficulty seeking health information (beta=.42; P=.02). Nonwhite caregivers (beta =-.33; P=.03), those with less education (beta =-.35; P=.02), those with private insurance (beta =-.37; P=.01), and those without a regular health care provider (beta =-.35; P=.01) had less confidence seeking health information. Caregivers with higher income had more confidence (beta =.12; P≤.001) seeking health information. CONCLUSIONS: This study highlights the prevalence of electronic means to find health information among caregivers. Notable differences in difficulty and confidence in health information seeking exist between caregivers, indicating the need for more attention to the socioeconomic status and caregivers born outside of the United States. Findings can guide efforts to optimize caregivers' health information-seeking experiences.

Concordance of Patient and Caregiver Reports on the Quality of Colorectal Cancer Care.

PURPOSE: We aimed to better understand how similarly patients with colorectal cancer and caregivers view care quality and to assess factors that may influence concordance. MATERIALS AND METHODS: We conducted a secondary analysis of paired patient and caregiver quality ratings of colorectal cancer care in three specific domains: surgery, chemotherapy overall, and chemotherapy nursing. Agreement was assessed with difference scores, concordance with Gwet second-order agreement statistics (AC2), and variation in agreement with stratified analyses. We examined whether the care experiences of patients and caregivers were associated with top-box (most-positive) ratings and examined variations in concordance on the basis of the presence of a top-box score. RESULTS: Four hundred seventeen patient-caregiver dyads completed the surveys. Quality-of-care ratings were positively skewed, with most dyads indicating top-box ratings. Patient and caregiver care experiences were highly associated with top-box ratings. Overall patient-caregiver concordance was very high for all three care domains (surgery: AC2, 0.87 [95% CI, 0.83 to 0.90]; chemotherapy overall: AC2, 0.84 [95% CI, 0.79 to 0.88]; chemotherapy nursing: AC2, 0.91 [95% CI, 0.87 to 0.94]). Stratified analyses of patient and caregiver characteristics did not identify any patterns that consistently affected concordance. The concordance statistic significantly decreased for all three outcomes (P < .001), however, when the patient or caregiver assessed quality as anything other than top box. CONCLUSION: Caregiver and patient reports on care quality were highly concordant for top-box care and did not vary with patient or caregiver factors. Additional exploration is needed to identify reasons for increased variability when the quality scores were less than a top-box response.

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.

"A Bone of Contention ": Perceived Barriers and Situational Dependencies to Food Preferences of Nursing Home Residents.

This study investigated barriers to fulfilling food preferences from nursing home (NH) residents' perspectives, and the reasons preferences changed (situational dependencies). Interviews were completed with 255 residents in 28 NHs across greater Philadelphia, PA using six food items from the Preferences for Everyday Living Inventory-NH (PELI-NH). Participants were predominantly white (77%), female (67.8%), and widowed (44%) with high school educations (48%). Content analysis was used to identify n = 386 barriers and n = 57 situational dependencies. Participants reported provider policies and staff proficiency as environmental barriers to preference fulfillment regarding what, when, and where to eat. Perceived health and personal resources were barriers to obtaining snacks, take-out, and dining out. Situational dependencies resulted from residents' perceived health and quality of family relationships. Results have implications for providers to centralize food preference fulfillment in care planning, and to use food preferences to address dining quality concerns.