RESUMEN
INTRODUCTION: Biomarker testing for Alzheimer's disease and related disorders (ADRD) brings new opportunities for nurses to foster shared decision-making by leading pre-test counseling (PTC) for patients and families. METHODS: Audio-recordings of 18 nurse-led PTC sessions were analyzed to characterize questions posed by patient and family members dyads considering whether to pursue amyloid positron emission tomography. RESULTS: Sessions lasted 20 to 75 minutes and generated rich discussion of the purpose and potential implications of amyloid imaging. Dyads posed questions regarding: basic neuroanatomy; the spectrum of normal cognitive aging to dementia; clinical phenotypes and pathological hallmarks of ADRD; secondary prevention of ADRD; and advance planning. In response, PTC facilitators provided disease-specific education, clarification of overt misconceptions, caregiver support, and emotion de-escalation. CONCLUSION: Nurses conducting PTC for AD biomarker testing should be equipped to answer questions about topics both directly and indirectly related to testing, and also provide emotional support.
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Enfermedad de Alzheimer , Disfunción Cognitiva , Humanos , Enfermedad de Alzheimer/diagnóstico , Rol de la Enfermera , Tomografía de Emisión de Positrones/métodos , Consejo , Biomarcadores , Disfunción Cognitiva/psicologíaRESUMEN
BACKGROUND AND OBJECTIVES: Insufficient ethnoracial diversity is a pervasive challenge in Alzheimer's disease (AD) research. The Recruitment Innovations for Diversity Enhancement (RIDE) is grounded in the premise that culturally informed narratives of research participation can inspire individuals from a given culture-sharing group to consider research enrollment. This study examines factors associated with interest in AD research among Black or African American adults following exposure to RIDE narrative campaign materials. RESEARCH DESIGN AND METHODS: A community-based sample of 500 Black or African American adults viewed RIDE narrative materials online and completed a survey of perceptions about research, AD risk, and likelihood of enrolling in AD research. Logistic regression examined predictors and mediators of self-reported likelihood of participating in AD research. RESULTS: Most (72%) participants reported interest in being contacted for AD research opportunities. After controlling for key variables, prior experience with clinical research and trust in medical researchers emerged as independent predictors of likelihood of enrolling in AD research. Perceived burden of AD research partially mediated the effects of prior research experience and trust on likelihood of enrollment. Perceived benefits of AD research also played a mediating role, accounting for over one third of the effect of trust on likelihood of enrollment. DISCUSSION AND IMPLICATIONS: This study advances the field's understanding of how narrative may function to enhance diversity in AD research. Findings suggest that participant narratives should address experiences regarding the burdens and potential benefits of AD research participation as these factors may influence decisions leading to subsequent research enrollment.
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Enfermedad de Alzheimer , Negro o Afroamericano , Humanos , Encuestas y Cuestionarios , NarraciónRESUMEN
INTRODUCTION: Recent studies suggest that Alzheimer's disease (AD) biomarker disclosure has no discernable psychological impact on cognitively healthy persons. Far less is known about how such results affect symptomatic individuals and their caregivers. METHODS: Randomized controlled trial of 82 mild cognitive impairment (MCI) patient and caregiver dyads (total n = 164) to determine the effect of receiving amyloid positron emission tomography results on understanding of, and perceived efficacy to cope with, MCI over 52 weeks of follow-up. RESULTS: Gains in the primary outcomes were not consistently observed. Amyloid negative patients reported greater perceived ambiguity regarding MCI at follow-up, while moderate and sustained emotional distress was observed in patients, and to a lesser extent, caregivers, of those who were amyloid positive. There was no corresponding increase in depressive symptoms. DISCUSSION: These findings point to the possibility that both MCI patients and caregivers may need emotional support after the disclosure of amyloid scan results.
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Amiloide/metabolismo , Disfunción Cognitiva/diagnóstico , Revelación , Tomografía de Emisión de Positrones , Adaptación Psicológica , Anciano , Cuidadores/psicología , Femenino , Humanos , MasculinoRESUMEN
Overseeing medication-taking is a critical aspect of dementia caregiving. This trial examined a tailored, problem-solving intervention designed to maximize medication management practices among caregivers of persons with memory loss. Eighty-three community-dwelling dyads (patient + informal caregiver) with a baseline average of 3 medication deficiencies participated. Home- and telephone-based sessions were delivered by nurse or social worker interventionists and addressed basics of managing medications, plus tailored problem solving for specific challenges. The outcome of medication management practices was assessed using the Medication Management Instrument for Deficiencies in the Elderly (MedMaIDE) and an investigator-developed Medication Deficiency Checklist (MDC). Linear mixed modeling showed both the intervention and usual care groups had fewer medication management problems as measured by the MedMaIDE (F = 6.91, p < .01) and MDC (F = 9.72, p < .01) at 2 months post-intervention. Reduced medication deficiencies in both groups suggests that when nurses or social workers merely raise awareness of the importance of medication adherence, there may be benefit.