Literature DB >> 22808449

Informed consent, participation in research, and the Alzheimer's patient.

Edmund Howe1.   

Abstract

Patients with Alzheimer's disease may want to participate in research on Alzheimer's disease, but their participation involves exceptional considerations. Plans should be made for determining these patients' cognitive capacity on a regular basis; for example, throughout a study, cognitive capacity may decline, making it necessary for a patient's pre-designated surrogate decision maker to become more involved. Patients with Alzheimer's disease may also choose to designate someone other than their primary caregiver to be their surrogate decision maker. This article discusses these and other core ethical issues.

Entities:  

Keywords:  Alzheimer’s disease; Informed consent; MCI; mental capacity; minimal cognitive impairment; research; surrogate decision maker

Year:  2012        PMID: 22808449      PMCID: PMC3398682     

Source DB:  PubMed          Journal:  Innov Clin Neurosci        ISSN: 2158-8333


  16 in total

Review 1.  Interventions to improve research participants' understanding in informed consent for research: a systematic review.

Authors:  James Flory; Ezekiel Emanuel
Journal:  JAMA       Date:  2004-10-06       Impact factor: 56.272

2.  A new brief instrument for assessing decisional capacity for clinical research.

Authors:  Dilip V Jeste; Barton W Palmer; Paul S Appelbaum; Shahrokh Golshan; Danielle Glorioso; Laura B Dunn; Kathleen Kim; Thomas Meeks; Helena C Kraemer
Journal:  Arch Gen Psychiatry       Date:  2007-08

Review 3.  Assessing decisional capacity for clinical research or treatment: a review of instruments.

Authors:  Laura B Dunn; Milap A Nowrangi; Barton W Palmer; Dilip V Jeste; Elyn R Saks
Journal:  Am J Psychiatry       Date:  2006-08       Impact factor: 18.112

4.  Toward revising the ethical boundaries of research with noncompetent subjects.

Authors:  Spencer Eth; Gregory B Leong
Journal:  Am J Psychiatry       Date:  2009-02       Impact factor: 18.112

5.  Patient participation in medical and social decisions in Alzheimer's disease.

Authors:  Johannes Hamann; Katharina Bronner; Julia Margull; Rosmarie Mendel; Janine Diehl-Schmid; Markus Bühner; Reinhold Klein; Antonius Schneider; Alexander Kurz; Robert Perneczky
Journal:  J Am Geriatr Soc       Date:  2011-10-22       Impact factor: 5.562

6.  Experts' opinions on ethical issues of genetic research into Alzheimer's disease: results of a Delphi study in the Netherlands.

Authors:  A van der Vorm; A L van der Laan; G Borm; M Vernooij-Dassen; M Olde Rikkert; E van Leeuwen; W Dekkers
Journal:  Clin Genet       Date:  2009-12-10       Impact factor: 4.438

7.  Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research.

Authors:  A van der Vorm; M J F J Vernooij-Dassen; P G Kehoe; M G M Olde Rikkert; E van Leeuwen; W J M Dekkers
Journal:  J Med Ethics       Date:  2009-02       Impact factor: 2.903

8.  Older adults' attitudes toward enrollment of non-competent subjects participating in Alzheimer's research.

Authors:  Jason Karlawish; Jonathan Rubright; David Casarett; Mark Cary; Thomas Ten Have; Pamela Sankar
Journal:  Am J Psychiatry       Date:  2008-10-15       Impact factor: 18.112

9.  Participation in dementia research: rates and correlates of capacity to give informed consent.

Authors:  J Warner; R McCarney; M Griffin; K Hill; P Fisher
Journal:  J Med Ethics       Date:  2008-03       Impact factor: 2.903

10.  The views of Alzheimer disease patients and their study partners on proxy consent for clinical trial enrollment.

Authors:  Jason Karlawish; Scott Y H Kim; David Knopman; Christopher H van Dyck; Bryan D James; Daniel Marson
Journal:  Am J Geriatr Psychiatry       Date:  2008-03       Impact factor: 4.105

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  9 in total

1.  Multimedia Aided Consent for Alzheimer's Disease Research.

Authors:  Barton W Palmer; Alexandrea L Harmell; Laura B Dunn; Scott Y Kim; Luz L Pinto; Shahrokh Golshan; Dilip V Jeste
Journal:  Clin Gerontol       Date:  2017-11-28       Impact factor: 2.619

2.  Informed Consent in Two Alzheimer's Disease Research Centers: Insights From Research Coordinators.

Authors:  Christine M Suver; Jennifer K Hamann; Erin M Chin; Felicia C Goldstein; Hanna M Blazel; Cecelia M Manzanares; Megan J Doerr; Sanjay J Asthana; Lara M Mangravite; Allan I Levey; James J Lah; Dorothy F Edwards
Journal:  AJOB Empir Bioeth       Date:  2020-03-16

3.  Moving toward more person-centered dementia care.

Authors:  Lauren B Gerlach; Helen C Kales
Journal:  Int Psychogeriatr       Date:  2021-04-05       Impact factor: 7.191

4.  Measuring informed consent capacity in an Alzheimer's disease clinical trial.

Authors:  Peter D Guarino; Julia E Vertrees; Sanjay Asthana; Mary Sano; Maria D Llorente; Muralidhar Pallaki; Susan Love; Gerard D Schellenberg; Maurice W Dysken
Journal:  Alzheimers Dement (N Y)       Date:  2016-09-20

5.  Implementation of a training program to increase knowledge, improve attitudes and reduce nursing care omissions towards patients with dementia in hospital settings: a mixed-method study protocol.

Authors:  Melina Evripidou; Anastasios Merkouris; Andreas Charalambous; Evridiki Papastavrou
Journal:  BMJ Open       Date:  2019-07-19       Impact factor: 2.692

6.  Reporting of Research Ethics in Studies Focusing on Foot Health in Patients with Rheumatoid Arthritis - A Systematic Review.

Authors:  Minna Stolt; Emilia Kielo-Viljamaa; Anne-Marie Laitinen; Riitta Suhonen; Helena Leino-Kilpi
Journal:  J Empir Res Hum Res Ethics       Date:  2021-10-14       Impact factor: 1.742

7.  Perceptions of Research Participation among a Sample of Florida Residents Aged 50 and Over Reporting Dementia.

Authors:  Sadaf Arefi Milani; Linda B Cottler; Catherine W Striley
Journal:  Ageing Int       Date:  2021-08-31

8.  Capacity to consent to research participation in adults with metastatic cancer: comparisons of brain metastasis, non-CNS metastasis, and healthy controls.

Authors:  Kyler Mulhauser; Dario A Marotta; Adam Gerstenecker; Gabrielle Wilhelm; Terina Myers; Meredith Gammon; David E Vance; Burt Nabors; John Fiveash; Kristen Triebel
Journal:  Neurooncol Pract       Date:  2020-03-09

Review 9.  If Human Brain Organoids Are the Answer to Understanding Dementia, What Are the Questions?

Authors:  Lezanne Ooi; Mirella Dottori; Anthony L Cook; Martin Engel; Vini Gautam; Alexandra Grubman; Damián Hernández; Anna E King; Simon Maksour; Helena Targa Dias Anastacio; Rachelle Balez; Alice Pébay; Colin Pouton; Michael Valenzuela; Anthony White; Robert Williamson
Journal:  Neuroscientist       Date:  2020-04-13       Impact factor: 7.519

  9 in total

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