Issues involving informed consent for research participants with alzheimer's disease

Journal of Academic Ethics 6 (3):197-203 (2008)
Alzheimer’s disease is the most common form of dementia which is estimated to impact 350,000 people over 65 years of age in Canada. The lack of effective treatment and the growing number of people who are expected to be diagnosed with Alzheimer’s disease in the near future are compelling reasons why continued research is in this area is necessary. With additional research, there needs to be greater recognition of the complexity of seeking ongoing informed consent from those with Alzheimer’s disease. This complexity is because the impairment of memory and cognitive ability does not diminish in a linear manner, but rather fluctuates between periods of impairment and relatively normal cognitive lucidness. There is limited discussion in the guidelines of those progressing from early stages of Alzheimer’s disease who have intermittent cognitive function. Guidelines to research and Research Ethics Boards require further development to facilitate researcher including those with Alzheimer’s disease while protecting this growing pool of potential participants.
Keywords Advanced directives  Alzheimer’s disease  Dementia  Cognitive impairment  Informed consent  Dementia  Elderly  Ethics  Proxy decision maker  Research  Seniors  TCPS  CMA
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DOI 10.1007/s10805-008-9066-8
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