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1.
J Alzheimers Dis ; 97(3): 1083-1090, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38306053

RESUMO

Recent research aimed at the discovery, integration, and communication of health outcome measures (or "biomarkers") in Alzheimer's disease has raised challenging questions related to whether, how and when results from these investigations should be disclosed to research participants. Reflecting the apparent heterogeneity of many neurodegenerative diseases, biomarker or other risk factor results are often probabilistic, interactive, multi-modal, and selective. Such characteristics make it very complex to summarize and communicate to clinicians, researchers, and research participants. Whereas the format and content of academic literature is well-managed by the peer-review process, reporting individualized results to participants involves complex, sensitive, and ethical considerations. This paper describes three key factors to consider in decisions about the return of results to research participants: complexity, precision, and responsibility. The paper also presents six practical recommendations for implementing meaningful and ethical communication with research participants.


Assuntos
Doença de Alzheimer , Humanos , Doença de Alzheimer/diagnóstico , Biomarcadores
2.
J Alzheimers Dis ; 97(3): 1105-1109, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38189750

RESUMO

Technology can support the delivery of care and improve the lives of people living with dementia. However, despite a substantial body of evidence demonstrating the benefits and opportunities afforded by technology, gaps remain in how technology and technology ethics are addressed in dementia care education. Here we discuss disparities in current educational programming and highlight the ethical challenges arising from underdeveloped knowledge exchange about dementia care technology. We put forward that for technology to be ethically deployed and maximized to improve outcomes, it must be embedded into dementia education programs and made widely accessible to the caregiver community.


Assuntos
Cuidadores , Demência , Humanos , Tecnologia , Demência/terapia
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