The Brazilian version of the Johns Hopkins dementia care needs assessment (JHDCNA-br 2.0): translation, cultural adaptation, and preliminary psychometric testing.

OBJECTIVES: People with dementia have several unmet needs during the syndrome progression. More unmet needs are related to hospitalizations, injuries, and death. Little is known about the care needs for people living with dementia in Brazil. This study aims to translate and adapt the Johns Hopkins Dementia Care Needs Assessment (JHDCNA 2.0), a tool design to identify the dementia-related needs of people with dementia and their caregivers, to Brazilian Portuguese, and to verify psychometric properties. METHOD: JHDCNA 2.0 underwent a translation, back-translation, and cultural adaptation. Preliminary psychometric testing of the Brazilian version (JHDCNA-Br 2.0) included pilot testing and experts' assessment, analyses of reliability, evidence based on test content and relations to other variables. We conducted 140 in-home interviews to assess several sociodemographic and health aspects and to be able to complete the JHDCNA-Br 2.0. RESULTS: The JHDCNA-Br 2.0 is reliable and has evidence based on test content and on relations to other variables for people living with dementia and caregivers. Preliminary results suggest high prevalence of unmet needs. CONCLUSION: JHDCNA-Br 2.0 is a reliable and valid tool. The availability of this tool brings new opportunities to the study of dementia care, taking into consideration cultural aspects and may help inform future approaches to dementia care delivery to support persons and families affected by these conditions.

Care partners and consumer health information technology: A framework to guide systems-level initiatives in support of digital health equity.

Introduction: Consumer-oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified. Methods: We assemble evidence and concepts from the literature describing interpersonal communication, relational coordination theory, and systems-thinking to develop an integrative framework describing the care partner's role in applied CHIT innovations. Our framework describes pathways through which systematic engagement of the care partner affects longitudinal work processes and multi-level outcomes relevant to Learning Health Systems. Results: Our framework is grounded in relational coordination, an emerging theory for understanding the dynamics of coordinating work that emphasizes role-based relationships and communication, and the Systems Engineering Initiative for Patient Safety (SEIPS) model. Cross-cutting work systems geared toward explicit and purposeful support of the care partner role through CHIT may advance work processes by promoting frequent, timely, accurate, problem-solving communication, reinforced by shared goals, shared knowledge, and mutual respect between patients, care partners, and care team. We further contend that systematic engagement of the care partner in longitudinal work processes exerts beneficial effects on care delivery experiences and efficiencies at both individual and organizational levels. We discuss the utility of our framework through the lens of an illustrative case study involving patient portal-mediated pre-visit agenda setting. Conclusions: Our framework can be used to guide applied embedded CHIT interventions that support the care partner role and bring value to Learning Health Systems through advancing digital health equity, improving user experiences, and driving efficiencies through improved coordination within complex work systems.

Emergency Department Length of Stay for Older Adults With Dementia.

STUDY OBJECTIVE: The emergency department (ED) poses unique challenges and risks to persons living with dementia. A longer ED length of stay is associated with the risk of death, delirium, and medication errors. We sought to determine whether ED length of stay differed by dementia status and trends in ED length of stay for persons living with dementia from 2014 to 2018 and whether persons living with dementia were at a higher risk for prolonged ED length of stay (defined as a length of stay > 90th percentile). METHODS: In this observational study, we used data from the Healthcare Cost and Utilization Project State Emergency Department Database from Massachusetts, Arkansas, Arizona, and Florida. We included ED visits resulting in discharge for adults aged ≥65 years from 2014 to 2018. We used inverse probability weighting to create comparable groups of visits on the basis of dementia status. We used generalized linear models to estimate the mean difference in ED length of stay on the basis of dementia status and logistic regression to determine the odds of prolonged ED length of stay. RESULTS: We included 1,039,497 ED visits (mean age: 83.5 years; 64% women; 78% White, 12% Hispanic). Compared with visits by persons without dementia, ED length of stay was 3.1 hours longer (95% confidence interval [CI] 3.0 to 3.3 hours) for persons living with dementia. Among the visits resulting in transfer, ED length of stay was on average 4.1 hours longer (95% CI 3.6 to 4.5 hours) for persons living with dementia. Visits by persons living with dementia were more likely to have a prolonged length of stay (risk difference 4.1%, 95% CI 3.9 to 4.4). CONCLUSION: ED visits were more than 3 hours longer for persons living with versus without dementia. Initiatives focused on optimizing ED care for persons living with dementia are needed.

A case of familial frontotemporal dementia caused by a progranulin gene mutation.

After Alzheimer's disease, Frontotemporal dementia (FTD) is the most common cause of early-onset dementia. Several genetic mutations have been identified in familial FTD, with mutations in progranulin (GRN) accounting for approximately 20-25% of familial FTD cases and about 10% of total FTD cases. We report the case of a familial FTD patient with atypical parkinsonism who was found to have GRN frontotemporal dementia (GRN-FTD) with a pathogenic splice site mutation (c.709-2A > G) and notable phenotypic heterogeneity among family members.

Use of the patient portal among older adults with diagnosed dementia and their care partners.

INTRODUCTION: Care partners are at the forefront of dementia care, yet little is known about patient portal use in the context of dementia diagnosis. METHODS: We conducted an observational cohort study of date/time-stamped patient portal use for a 5-year period (October 3, 2017-October 2, 2022) at an academic health system. The cohort consisted of 3170 patients ages 65+ with diagnosed dementia with 2+ visits within 24 months. Message authorship was determined by manual review of 970 threads involving 3065 messages for 279 patients. RESULTS: Most (71.20%) older adults with diagnosed dementia were registered portal users but far fewer (10.41%) had a registered care partner with shared access. Care partners authored most (612/970, 63.09%) message threads, overwhelmingly using patient identity credentials (271/279, 97.13%). DISCUSSION: The patient portal is used by persons with dementia and their care partners. Organizational efforts that facilitate shared access may benefit the support of persons with dementia and their care partners. Highlights Patient portal registration and use has been increasing among persons with diagnosed dementia. Two thirds of secure messages from portal accounts of patients with diagnosed dementia were identified as being authored by care partners, primarily using patient login credentials. Care partners who accessed the patient portal using their own identity credentials through shared access demonstrate similar levels of activity to patients without dementia. Organizational initiatives should recognize and support the needs of persons with dementia and their care partners by encouraging awareness, registration, and use of proper identity credentials, including shared, or proxy, portal access.

"At least we finally found out what it was": Dementia diagnosis in minoritized populations.

BACKGROUND: Disparities in diagnosis persist among persons living with dementia (PLWD); most research on delayed diagnosis relies on medical records or administrative claims. This study aimed to identify factors that delay or facilitate dementia diagnoses in racial or ethnic minoritized PLWD and elicit care partner perspectives on timing and effects of diagnosis. METHODS: Maryland-based participants cared for a PLWD age 60 or older, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in-depth, semi-structured interviews were conducted and analyzed using conventional qualitative content analysis methods. RESULTS: Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family-initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms. CONCLUSIONS: Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems-level and community-led public health interventions may also help address disparities in brain health education and dementia diagnosis.

Social isolation and 9-year dementia risk in community-dwelling Medicare beneficiaries in the United States.

BACKGROUND: Social isolation can influence whether older adults develop dementia. We examine the association between social isolation and incident dementia among older adults in a nationally representative sample of community dwelling older adults in the United States (U.S.). We also investigate whether this association varies by race and ethnicity. METHODS: Data (N = 5022) come from the National Health and Aging Trends Study, a longitudinal and nationally representative cohort of older adults in the U.S. A composite measure of social isolation was used to classify older adults as socially isolated or not socially isolated at baseline. Demographic and health factors were measured at baseline via self-report. Dementia was measured at each round of data collection. Discrete-time proportional hazard time-to-event models were used to assess the association between social isolation and incident dementia over 9 years (2011-2020). RESULTS: Of 5022 older adults, 1172 (23.3%) were socially isolated, and 3850 (76.7%) were not socially isolated. Adjusting for demographic and health factors, being socially isolated (vs. not socially isolated) was associated with a 1.28 (95% CI: 1.10-1.49) higher hazard of incident dementia over 9 years. There was no statistically significant difference by race and ethnicity. CONCLUSION: Social isolation among older adults is associated with greater dementia risk. Elucidating the pathway by which social isolation impacts dementia may offer meaningful insights for the development of novel solutions to prevent or ameliorate dementia across diverse racial and ethnic groups.

Catalyzing dementia care through the learning health system and consumer health information technology.

To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer-oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.

The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia.

OBJECTIVES: Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes. METHOD: A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors. RESULTS: Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics. CONCLUSIONS: CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities.