Alzheimer's Dementia

Justice.- Freedom of Science and the Scientist.- Love and Justice.- The Relation Between Science and Technology.- Sacrifice.- Anthropological Justification.- Emerging Moral Boundaries.- Alzheimer's Dementia: Contemporary Tensions Between Clinical Needs and Moral Boundaries.- Notes and References.- Research on Senile Dementia of the Alzheimer's Type: Ethical Issues Involving Informed Consent.- Problems of Evaluating Competence.- Conflict of Interest.- Respect for Autonomy vs Paternalism.- Paternalism, Justice, and Quality of Care.- Ethics and Methodology.- Conclusions.- Notes and References.- An Alternative Approach to Informed Consent in Research with Vulnerable Patients.- The Dilemma.- The Pressure for Research.- Stepping Back from Voluntariness.- Exemplary Care.- Collective Patient Control of Care.- General Implications of Nonvoluntary Approaches to SDAT.- The Social Context.- Conclusion.- Notes and References.- Technical Aspects of Obtaining Informed Consent from Persons with Senile Dementia of the Alzheimer's Type.- Clarity.- Risk.- The Informed Consent Form: To Be or Not To Be.- Readability.- The Two-Part Consent Form.- Procedural Adjuncts To Obtaining an Informed Consent.- References.- 4 Institutional Issues.- The Need for Alternatives to Informed Consent by Older Patients: Psychological and Physical Aspects of the Institutionalized Elderly.- The Institutional Environment.- The Institutionalized Elderly.- Improved Care.- Summary.- Notes and References.- Legal Issues in Research on Institutionalized Demented Patients.- Rights for Those of Diminished or Developing Capacity.- Research in General.- The Kaimowitz Case.- The Institution of the Nursing Home.- Privacy Rights and the Substituted Judgment Doctrine.- Substituted Judgment as the Basis for Consent to Research.- An Alternative: Consent Prior to Dementia.- Possible Liability.- Notes and References.- Issues of Equity in the Selection of Subjects for Experimental Research on Senile Dementia of the Alzheimers Type.- Ethics and Equity: The Limits of Regulation.- Some Principles for Equity in the Selection of Subjects.- Concern for the Least Advantaged.- Compensation.- The Voice of the Afflicted.- 5 Competency to Give Consent.- Competency to Consent to Research.- Competency and Consent.- Tests of Competency.- Evidencing a Choice.- Factual Comprehension.- Rational Reasoning and Manipulation of Information.- Appreciation of the Nature of the Situation.- Reasonable Outcome of Choice.- Conclusion.- References.- Assuring Adequate Consent: Special Considerations in Patients of Uncertain Competence.- Outline of the Legal Structure.- The Two-Tiered Approach to the Regulation of Medical Research.- Informed Consent to Ordinary Medical Procedures.- Informed Consent to Research Procedures.- The Presumption of Competency.- Incompetency.- What Is Incompetency?.- Who Decides Whether the Patient/Subject Is Incompetent?.- Who Makes Decisions for the Patient/Subject Who Is Incompetent?.- Conclusion.- Notes and References.- Assessment of Competence to Give Informed Consent.- Informed Consent Criteria.- Autonomy vs Paternalism.- Community and Consent.- Autonomy and Consent.- Assessment of Competence.- The Perception of Knowledge.- Beyond the Impasse.- Notes and References.- 6 Proxy and Derived Consent.- Autonomy and Proxy Consent.- Autonomy.- Four Senses of Autonomy Action.- Models of Proxy Consent.- Specific Authorization.- General Authorization With Instructions.- General Authorization Without Instructions.- Instructions Without Authorization.- Substitute Judgment.- Deputy Judgment.- Autonomy and Proxy Consent.- Specific Authorization.- General Authorization With Instructions.- General Authorization Without Instructions.- Instructions Without Authorization.- Substitute Judgment.- Deputy Judgment.- Summary.- Partial Competence of the Principal.- Recommendations.- Notes and References.- Derived Consent, Proxy Consent: Legal Issues.- Common Law Consent Requirements.- Therapeutic.- Mixed Therapeutic and Nontherapeutic.- Nontherapeutic.- Statutory Consent Requirements.- Right To Refuse Consent to Life-Prolonging Procedures.- Nontherapeutic Procedures and No Duty To Confer a Benefit.- Analogy to Those Institutionalized as Mentally Infirm.- Application of the National Commission's Recommendations to SDAT Individuals.- Subject Advocate, Durable Power of Attorney, and Ulysses Contract.- A Tentative Model.- Conclusion.- Notes and References.- Clinical Research in Senile Dementia of the Alzheimer's Type: Suggested Guidelines Addressing the Ethical and Legal Issues.