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  1. Planning Ahead for Dementia Research Participation: Insights From a Survey of Older Australians and Implications for Ethics, Law and Practice.Nola Ries, Elise Mansfield & Rob Sanson-Fisher - 2019 - Journal of Bioethical Inquiry 16 (3):415-429.
    People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older attending hospital outpatient clinics about clinical research participation if they had (...)
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  • Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform.Nola M. Ries, Katie A. Thompson & Michael Lowe - 2017 - Journal of Bioethical Inquiry 14 (3):359-374.
    Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes (...)
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  • Beyond Competence: Advance Directives in Dementia Research.Karin Roland Jongsma & Suzanne van de Vathorst - 2015 - Monash Bioethics Review 33 (2-3):167-180.
    Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...)
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  • Advance Directives as a Tool to Respect Patients’ Values and Preferences: Discussion on the Case of Alzheimer’s Disease.Corinna Porteri - 2018 - BMC Medical Ethics 19 (1):9.
    The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...)
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