Alzheimer s Dementia

The National Institute on Aging (NIA) has historically been concerned with the protection of human subjects. In July 1977, the NIA sponsored a meeting to update and supplement guide lines for protecting those participating in Federal research pro jects. Although the basic guidelines had been in effect since 1966, it had been neglected to include the elderly as a vulnerable population. In November 1981, the NIA organized a conference on the ethical and legal issues related to informed consent in senile dementia cases. The present volume offers the latest and best thinking on Alzheimer's Dementia to have emerged from the dialog that was first embarked upon at the NIA meeting. Indeed, the issues and concerns it treats now seem even more relevant than they appeared historically because of the vastly greater awareness in the community of the entire spectrum of problems Alzheimer's disease confronts us all with. Our interest and concern is both humanitarian and self serving. Clearly older people must be protected from in appropriate research and careful attention must be paid to the circumstances under which research is conducted on those older persons who have given anything less than full consent. It is equally necessary, however, for the research enterprise to be protected so that today's elderly and those of the future can benefit from the fruits of research.

Contenu
1 Legal and Science Background.- Current Frontiers in Research on Alzheimer's Disease.- Current Regulations for the Protection of Human Subjects.- Clinical Symptoms Accompanying Progressive Cognitive Decline and Alzheimer's Disease: Relationship to Denial and Ability to Give Informed Consent.- The Physician-Researcher: Role Conflicts.- 2 Personal Perspectives.- Impact of Alzheimers Disease and the Role of the Patient's Family.- Advocacy for Persons with Senile Dementia.- Ethical Issues in the Care of the Patient Involved in Alzheimer's Disease Research.- 3 Historical, Legal, and Ethical Background.- Research Objectives and the Social Structuring of the Research Enterprise: An Historical and Ethical Perspective.- Research on Senile Dementia of the Alzheimer's Type: Ethical Issues Involving Informed Consent.- An Alternative Approach to Informed Consent in Research with Vulnerable Patients.- Technical Aspects of Obtaining Informed Consent from Persons with Senile Dementia of the Alzheimer's Type.- 4 Institutional Issues.- The Need for Alternatives to Informed Consent by Older Patients: Psychological and Physical Aspects of the Institutionalized Elderly.- Legal Issues in Research on Institutionalized Demented Patients.- Issues of Equity in the Selection of Subjects for Experimental Research on Senile Dementia of the Alzheimers Type.- 5 Competency to Give Consent.- Competency to Consent to Research.- Assuring Adequate Consent: Special Considerations in Patients of Uncertain Competence.- Assessment of Competence to Give Informed Consent.- 6 Proxy and Derived Consent.- Autonomy and Proxy Consent.- Derived Consent, Proxy Consent: Legal Issues.- Clinical Research in Senile Dementia of the Alzheimer's Type: Suggested Guidelines Addressing the Ethical and LegalIssues.