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Ethical and Care Issues
Individuals and families living with Alzheimer's will face many decisions throughout the course of the disease including decisions about care, treatment, participation in research, end-of-life issues, autonomy and safety. These statements were created to help persons with dementia and their families as they face these issues.
The following statements represent the Alzheimer's Association's positions around ethical, medical and care topics related to Alzheimer's disease and dementia. These statements are based on relevant research, best practice and expert opinion.
Dementia Related Behaviors (PDF)
Individuals living with dementia may experience behavioral and psychotic symptoms during the course of the disease due to the alteration in processing, integrating and retrieving new information. This statement addresses various interventions for dementia-related behaviors.
Diagnosis Disclosure (PDF)
This statement discusses telling the person with Alzheimer's about the diagnosis.
Driving and Dementia (PDF)
While a diagnosis of Alzheimer's does not mean a person needs to stop driving immediately, there will come a time when it is no longer safe to drive. This statement addresses the issues around driving including recommendations on planning ahead and steps to take when driving is no longer safe.
Electronic Tracking (PDF)
This statement provides information on the use of electronic tracking for individuals with Alzheimer's disease who are at risk for wandering.
End-of-Life Care (PDF)
The end or late stages of Alzheimer's disease can raise questions about the type of care offered to individuals in the final stages of a fatal disease. This statement provides information on the types of care available and stresses the importance of advance directives.
Feeding Issues in Advanced Dementia (PDF)
Individuals with advanced Alzheimer’s and other dementias commonly develop difficulty with eating and drinking, even with assistance, in the final stages of the disease process. This statement provides information on options for addressing nutrition at the end of life.
Genetic Testing (PDF)
This statement addresses the Association's position on genetic testing for Alzheimer's disease and provides information on the risks and benefits.
Placebo Control (PDF)
This statement reviews the use of placebos in clinical trials.
Protection of Participants in Research (PDF)
This statement reviews the risks and benefits to a surrogate enrolling an individual with Alzheimer's in a clinical trial.
Respect for Autonomy (PDF)
As cognitive abilities decline, respect for autonomy of the person with dementia can come in conflict with competence to make sound decisions and safety concerns. This statement addresses the ethical considerations of taking away a person's right to autonomous decision making.
Right to Treatment (PDF)
This statement addresses the rights of a person with dementia to not be denied medical treatment due to having dementia. It also addresses the right of individuals or their surrogates to refuse treatment.
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