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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.
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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.
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Demência , Vida Independente , Humanos , Estudos Transversais , Cuidadores/psicologia , Fatores de Proteção , Necessidades e Demandas de Serviços de Saúde , Demência/epidemiologia , Demência/terapia , Demência/psicologiaRESUMO
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.
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Demência , Portais do Paciente , Humanos , Idoso , Cuidadores , Estudos de Coortes , Demência/diagnóstico , Demência/epidemiologia , Demência/terapiaRESUMO
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.
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Doença de Alzheimer , Demência , Sistema de Aprendizagem em Saúde , Humanos , Demência/terapia , Cuidadores , Doença de Alzheimer/terapia , Melhoria de QualidadeRESUMO
BACKGROUND: In Medicare-funded home health care (HHC), one in three patients has cognitive impairment (CI), but little is known about the care intensity they receive in this setting. Recent HHC reimbursement changes fail to adjust for patient CI, potentially creating a financial disincentive to caring for these individuals. METHODS: This cohort study included a nationally representative sample of 1214 Medicare HHC patients between 2011 and 2016. Multivariable logistic and negative binomial regressions modelled the relationship between patient CI and care intensity-measured as the number and type of visits received during HHC and likelihood of receiving multiple successive HHC episodes. RESULTS: Patients with CI had 45% (P < .05) greater odds of receiving multiple successive HHC episodes and received an additional 2.82 total (P < .001), 1.39 nursing (P = .003), 0.72 physical therapy (P = .03), and 0.60 occupational therapy visits (P = .01) during the index HHC episode. DISCUSSION: Recent HHC reimbursement changes do not reflect the more intensive care needs of patients with CI.
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Disfunção Cognitiva , Serviços de Assistência Domiciliar , Idoso , Disfunção Cognitiva/terapia , Estudos de Coortes , Humanos , Medicare , Estados UnidosRESUMO
There is growing interest in understanding home health utilization and outcomes for those with cognitive impairment (CI). Yet, approaches to measuring CI during home health vary widely across studies, with little known regarding potential implications for findings. Among a nationally representative sample of community-living Medicare beneficiaries receiving home health (2011-2016), we compare estimated CI prevalence using four different measures and evaluate measure-specific strengths and limitations. CI prevalence estimates ranged from 18.4% of the sample with probable dementia from national survey data; to 27.8% with diagnosed dementia, from Medicare claims; to 26.7% with memory deficit and/or impaired decision-making and 43.9% with reduced cognitive function, from OASIS. Researchers must be deliberate in their choice of CI measure and transparent regarding its benefits and limitations. Regardless of the measure used, a sizable percentage of home health patients have CI, supporting the importance of ongoing research in this area.
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Disfunção Cognitiva , Demência , Idoso , Disfunção Cognitiva/epidemiologia , Humanos , Estudos Longitudinais , Medicare , Prevalência , Estados UnidosRESUMO
Agitation is a common neuropsychiatric symptom of Alzheimer's disease (AD) that greatly impacts quality of life and amplifies caregiver burden. Agitation in AD may be associated with volume loss in the anterior cingulate cortex, posterior cingulate cortex, insula, amygdala, and frontal cortex, as well as with degeneration of monoaminergic neurotransmission, disrupted circadian rhythms, and frailty. Current pharmacologic options have troubling safety concerns and only modest efficacy. There is increasing interest in cannabinoids as promising agents due to preclinical and early clinical research that suggest cannabinoids can elicit anxiolytic, antidepressant, and/or anti-inflammatory effects. Cannabinoids may relieve agitation by regulating neurotransmitters, improving comorbidities and circadian rhythms, and increasing cerebral circulation. Here we discuss the possible contributory mechanisms for agitation in AD and the therapeutic relevance of cannabinoids, including CBD and THC.
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Doença de Alzheimer , Canabinoides , Doença de Alzheimer/complicações , Doença de Alzheimer/tratamento farmacológico , Canabinoides/uso terapêutico , Lobo Frontal , Humanos , Agitação Psicomotora/tratamento farmacológico , Agitação Psicomotora/etiologia , Qualidade de VidaRESUMO
Neuropsychiatric symptoms (NPS) in persons with dementia (PWD) are common and can lead to poor outcomes, such as institutionalization and mortality, and may be exacerbated by sensory loss. Hearing loss is also highly prevalent among older adults, including PWD. OBJECTIVE: This study investigated the association between hearing loss and NPS among community- dwelling patients from a tertiary memory care center. DESIGN, SETTING, AND PARTICIPANTS: Participants of this cross-sectional study were patients followed at the Johns Hopkins Memory and Alzheimer's Treatment Center who underwent audiometric testing during routine clinical practice between October 2014 and January 2017. OUTCOME MEASUREMENTS: Included measures were scores on the Neuropsychiatric Inventory-Questionnaire and the Cornell Scale for Depression in Dementia. RESULTS: Participants (nâ¯=â¯101) were on average 76 years old, mostly female and white, and had a mean Mini-Mental State Examination score of 23. We observed a positive association between audiometric hearing loss and the number of NPS (bâ¯=â¯0.7 per 10 dB; 95% confidence interval [CI]: 0.2, 1.1; tâ¯=â¯2.86; pâ¯=â¯0.01; dfâ¯=â¯85), NPS severity (bâ¯=â¯1.3 per 10 dB; 95% CI: 0.4, 2.5; tâ¯=â¯2.13; pâ¯=â¯0.04; dfâ¯=â¯80), and depressive symptom severity (bâ¯=â¯1.5 per 10 dB; 95% CI: 0.4, 2.5; tâ¯=â¯2.83; pâ¯=â¯0.01; dfâ¯=â¯89) after adjustment for demographic and clinical characteristics. Additionally, the use of hearing aids was inversely associated with the number of NPS (bâ¯=â¯-2.09; 95% CI -3.44, -0.75; tâ¯=â¯-3.10; pâ¯=â¯0.003; dfâ¯=â¯85), NPS severity (bâ¯=â¯-3.82; 95% CI -7.19, -0.45; tâ¯=â¯-2.26; pâ¯=â¯0.03; dfâ¯=â¯80), and depressive symptom severity (bâ¯=â¯-2.94; 95% CI: -5.93, 0.06; tâ¯=â¯1.70; pâ¯=â¯0.05; dfâ¯=â¯89). CONCLUSION: Among patients at a memory clinic, increasing severity of hearing loss was associated with a greater number of NPS, more severe NPS, and more severe depressive symptoms, while hearing aid use was associated with fewer NPS, lower severity, and less severe depressive symptoms. Identifying and addressing hearing loss may be a promising, low-risk, non-pharmacological intervention in preventing and treating NPS.
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Disfunção Cognitiva , Auxiliares de Audição , Perda Auditiva , Idoso , Disfunção Cognitiva/complicações , Disfunção Cognitiva/epidemiologia , Estudos Transversais , Feminino , Perda Auditiva/complicações , Perda Auditiva/epidemiologia , Humanos , Masculino , Testes NeuropsicológicosRESUMO
Agitation is a common complication of Alzheimer's dementia (Agit-AD) associated with substantial morbidity, high healthcare service utilization, and adverse emotional and physical impact on care partners. There are currently no FDA-approved pharmacological treatments for Agit-AD. We present the study design and baseline data for an ongoing multisite, three-week, double-blind, placebo-controlled, randomized clinical trial of dronabinol (synthetic tetrahydrocannabinol [THC]), titrated to a dose of 10 mg daily, in 80 participants to examine the safety and efficacy of dronabinol as an adjunctive treatment for Agit-AD. Preliminary findings for 44 participants enrolled thus far show a predominately female, white sample with advanced cognitive impairment (Mini Mental Status Examination mean 7.8) and agitation (Neuropsychiatric Inventory-Clinician Agitation subscale mean 14.1). Adjustments to study design in light of the COVID-19 pandemic are described. Findings from this study will provide guidance for the clinical utility of dronabinol for Agit-AD. ClinicalTrials.gov Identifier: NCT02792257.
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OBJECTIVES: Cognitive impairment is underdiagnosed in primary care. Understanding factors that precipitate memory-related discussion could inform strategies to improve diagnosis and counseling. We assessed whether: 1) having a cognitive impairment or dementia diagnosis, 2) ratings of cognition by clinicians, or 3) ratings of cognition by family companions were associated with memory-related discussion during primary care visits. METHODS: We examined audio-recorded primary care visits of cognitively impaired patients aged 65 years and older, family companions (n = 93 dyads), and clinicians (n = 14). Cognitive impairment and dementia diagnoses were extracted from the electronic health record. Clinicians and family rated patient cognition on a 10-point scale in postvisit surveys. We measured memory-related discussion using a ratio of memory-related discussion episodes to total visit statements. RESULTS: We observed more memory-related discussion during primary care visits of patients with a diagnosis of mild cognitive impairment (+7.8% episodes; P < .001) or dementia (+26.3% episodes; P < .001) than no diagnosis. Clinician and family ratings of cognition varied by diagnosis: among patients with no diagnosis, family rated worse impairment than clinicians (average: 2.4 versus 1.3; P = .004) while for patients with a dementia diagnosis, clinicians rated worse impairment than family (average: 7.1 versus 5.5; P = .006). Each unit increase in clinician-rated severity of cognitive impairment was associated with more memory-related discussion (+2.6% episodes; P < .001); this association was attenuated for family (+0.7% episodes; P = .095). CONCLUSIONS: Discussion of cognitive impairment appears largely driven by clinician ratings of cognition and presence of an established diagnosis. Findings suggest potential benefit of engaging family to improve cognitive impairment detection in primary care.
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Transtornos Cognitivos/diagnóstico , Disfunção Cognitiva/psicologia , Demência/psicologia , Transtornos da Memória/diagnóstico , Atenção Primária à Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Idoso , Análise de Variância , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. DESIGN: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. SETTING: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. PARTICIPANTS: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. MEASUREMENTS: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. RESULTS: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. CONCLUSIONS: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.
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Cuidadores/psicologia , Demência/enfermagem , Necessidades e Demandas de Serviços de Saúde , Idoso , Idoso de 80 Anos ou mais , Baltimore , Estudos Transversais , Demência/psicologia , Feminino , Avaliação Geriátrica , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Qualidade de VidaRESUMO
BACKGROUND: Many older adults living with dementia have not been formally diagnosed. Even when clinicians document the diagnosis, patients and families may be unaware of the diagnosis. Knowledge of how individual characteristics affect detection and awareness of dementia is limited. OBJECTIVE: To identify characteristics associated with dementia diagnosis and awareness of diagnosis. DESIGN: Cross-sectional observational study. PARTICIPANTS: Five hundred eighty-five adults aged ≥ 65 in the National Health and Aging Trends Study who met assessment-based study criteria for probable dementia in 2011 and had 3 years of continuous, fee-for-service Medicare claims prior to 2011. MAIN MEASURES: Using multivariable logistic regression, we compared participants with undiagnosed versus diagnosed dementia (based on Medicare claims) on demographic, social/behavioral, functional, medical, and healthcare utilization characteristics. Among those diagnosed, we compared characteristics of participants unaware versus aware of the diagnosis (based on self or proxy report). KEY RESULTS: Among older adults with probable dementia, 58.7% were either undiagnosed (39.5%) or unaware of the diagnosis (19.2%). In adjusted analyses, individuals who were Hispanic (OR 2.48, 95% CI 1.19, 5.14), had less than high school education (OR 0.54 for at least high school education, 95% CI 0.32, 0.91), attended medical visits alone (OR 1.98, 95% CI 1.11, 3.51), or had fewer functional impairments (OR 0.79 for each impairment, 95% CI 0.69, 0.90) were more likely to be undiagnosed. Similarly, among those diagnosed, having less education (OR 0.42), attending medical visits alone (OR 1.97), and fewer functional impairments (OR 0.72) were associated with unawareness of diagnosis (all ps < 0.05). CONCLUSIONS: The majority of older adults with dementia are either undiagnosed or unaware of the diagnosis, suggesting shortcomings in detection and communication of dementia. Individuals who may benefit from targeted screening include racial/ethnic minorities and persons who have lower educational attainment, any functional impairment, or attend medical visits alone.
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Conscientização , Comunicação , Demência/diagnóstico , Demência/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Demência/epidemiologia , Feminino , Humanos , Masculino , Estudos Retrospectivos , Estados Unidos/epidemiologiaRESUMO
OBJECTIVE: Cognitive impairment poses communication challenges in primary care. Although family "companions" commonly attend primary care visits of older adults with cognitive impairment, little is known about how their involvement affects communication. Therefore, we sought to understand how companion involvement affects the quality of primary care visit communication for older adults with cognitive impairment. METHODS: Cross-sectional, descriptive qualitative study participants were as follows: (1) English-speaking adults age 65 or older with mild, moderate, or severe cognitive impairment; (2) family members or other unpaid companions who accompany older adults to primary care visits; and (3) primary care clinicians. Twenty semi-structured and in-depth qualitative interviews of older adults and their companions (N = 20 dyads) and two focus groups (N = 10 primary care clinicians) were conducted. Interviews and focus groups were transcribed and analyzed thematically. RESULTS: Family companions commonly facilitate communication by advocating for patients, ensuring the accuracy of information exchange and understanding, and preserving rapport. Significant communication challenges were also identified, including patient and companion role ambiguity, competing visit agendas, and primary care clinician confusion regarding the most accurate source of information. Patients, companions, and clinicians each identified strategies to improve communication, chief among them being to identify, differentiate, and respect both patient and companion priorities and perspectives. CONCLUSIONS: Family companions actively participate in primary care visits of older adults with cognitive impairment in ways that promote and inhibit effective communication. Findings suggest the need for strategies that more effectively and purposefully involve family in the care of primary care patients with cognitive impairment. Copyright © 2017 John Wiley & Sons, Ltd.
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Tomada de Decisão Clínica , Transtornos Cognitivos/terapia , Comunicação , Família , Atenção Primária à Saúde , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Família/psicologia , Feminino , Grupos Focais , Humanos , Masculino , Acompanhantes Formais em Exames Físicos , Pessoa de Meia-Idade , Relações Profissional-Família , Pesquisa QualitativaRESUMO
In conditions, such as dementia, stroke, or critical illness, clinicians often rely on substituted judgment through a surrogate to assist in medical decision making. Surrogates may face tough decisions regarding whether to pursue or forego surgery, tube feeding, and cardiopulmonary resuscitation. Surrogates often have little confidence in their decision (Majesko et al., 2012), though substituted judgment relies on the surrogate to determine the decision that the patient would have made. Prior studies suggest that surrogates predict patient preferences with only 68% accuracy (Shalowitz et al., 2006). This month's study by Bravo and colleagues (Bravo et al., 2017) explores differences in quality-of-life assessments between patients and surrogates as a potential explanation for surrogate inaccuracy.
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Demência , Qualidade de Vida , Idoso , Tomada de Decisões , Humanos , Julgamento , Preferência do PacienteRESUMO
In light of the growing burden of dementia, continued research into risk factors and potential contributors to disease development is essential. Clearly established risk factors can not only inform our understanding of disease pathophysiology and treatments but also identify potential preventive strategies. While age and the ApoE4 allele have consistently been shown to increase risk of developing dementia (Kukull et al., 2002), other risk factors have been less studied or have had inconsistent findings. The study by Booker and colleagues (Booker et al., 2016) re-examines proposed late-life medical risk factors for incident dementia in a large population-based case-control study. This important contribution is best interpreted in the context of existing research.
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Demência , Idoso , Demência/epidemiologia , Demência/etiologia , Demência/prevenção & controle , Humanos , Fatores de Proteção , Fatores de RiscoRESUMO
The increasing prevalence of dementia with population aging has heightened interest in understanding patterns of utilization and health expenditures in persons with dementia (PWD) among policy officials, practicing physicians, and health system. While a substantial part of this interest is concerned with the high costs of care for people diagnosed with dementia (Kelley et al., 2015), less attention has been focused on the costs and consequences of missed or delayed diagnosis in those who screen positive for dementia. The article on "Healthcare resource utilization and cost in dementia: are there differences between patients screened positive for dementia with and those without a formal diagnosis of dementia in primary care in Germany?" by Michalowsky and colleagues (Michalowsky et al., 2015) in this issue makes a particularly important contribution in this regard.
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Demência/epidemiologia , Gastos em Saúde , Alemanha , Humanos , PrevalênciaRESUMO
OBJECTIVE: To provide a critical review of a multipronged recruitment approach used to identify, recruit, and enroll a diverse community-based sample of persons with memory disorders into an 18-month randomized, controlled dementia care coordination trial. METHODS: Descriptive analysis of a recruitment approach comprised five strategies: community liaison ("gatekeepers") method, letters sent from trusted community organizations, display and distribution of study materials in the community, research registries, and general community outreach and engagement activities. Participants were 55 community organizations and 63 staff of community organizations in Baltimore, Maryland. Participant referral sources, eligibility, enrollment status, demographics, and loss to follow-up were tracked in a relational access database. RESULTS: In total, 1,275 referrals were received and 303 socioeconomically, cognitively, and racially diverse community-dwelling persons with cognitive disorders were enrolled. Most referrals came from letters sent from community organizations directly to clients on the study's behalf (39%) and referrals from community liaison organizations (29%). African American/black enrollees were most likely to come from community liaison organizations. CONCLUSION: A multipronged, adaptive approach led to the successful recruitment of diverse community-residing elders with memory impairment for an intervention trial. Key factors for success included using a range of evidence-supported outreach strategies, forming key strategic community partnerships, seeking regular stakeholder input through all research phases, and obtaining "buy-in" from community stakeholders by aligning study objectives with perceived unmet community needs.
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Transtornos da Memória/epidemiologia , Seleção de Pacientes , Encaminhamento e Consulta/estatística & dados numéricos , Sistema de Registros , Projetos de Pesquisa , Idoso , Idoso de 80 Anos ou mais , Baltimore , Relações Comunidade-Instituição , Etnicidade , Feminino , Humanos , MasculinoRESUMO
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.
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BACKGROUND: Most older adults with Alzheimer's disease and related dementias (ADRD) do not receive a timely formal diagnosis, although formal diagnosis is linked to improved outcomes. Little is known about how a recognized formal diagnosis impacts family caregivers, who provide crucial support for older adults experiencing ADRD. METHODS: We analyzed 2017 National Health and Aging Trends Study and linked National Study of Caregiving data for a nationally representative sample of 724 (weighted n = 5,431,551) caregivers who assisted an older adult with probable dementia. Probable dementia was determined via previously validated composite measure. We modeled caregiver experiences as a function of recognized formal ADRD diagnosis using weighted, logistic regression and adjusting for the relevant older adult and caregiver characteristics. RESULTS: Among caregivers who assisted an older adult with probable dementia, those assisting an individual with recognized formal ADRD diagnosis were significantly more likely to report emotional difficulty (aOR: 1.77; p = 0.03) and family disagreement over the older adult's care (aOR: 5.53; p = 0.03). They were also more likely to assist with communication during doctors' visits (aOR: 9.71; p < 0.001) and to receive caregiving-related training (aOR: 2.59; p = 0.01). CONCLUSIONS: While a timely ADRD diagnosis may help ensure access to needed supports for older adult and caregiver alike, diagnosis must be linked to support as they navigate resultant complex emotions. Formal diagnosis is linked to caregiver integration with, and support from, the older adult's team of health care providers; therefore, reducing existing disparities in timely diagnosis is necessary to ensure all caregivers have equal access to support.
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Cuidadores , Demência , Saúde da Família , Família , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença de Alzheimer/diagnóstico , Cuidadores/educação , Cuidadores/psicologia , Diagnóstico Tardio , Demência/diagnóstico , Família/psicologia , Modelos Logísticos , Equipe de Assistência ao Paciente , Reprodutibilidade dos Testes , Estresse Psicológico , Resultado do Tratamento , Brancos , Sistemas de Apoio PsicossocialRESUMO
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.