In 1997, the Alzheimer Society of Canada released a set of Ethical Guidelines in a document titled, Tough Issues. These guidelines were meant to stimulate dialogue among people with the disease, their families, health-care professionals and researchers. For some issues, there were recommended solutions. For other issues, it was not possible to outline specific recommendations, only factors to consider in making decisions.
The original Tough Issues was the result of two years of consultation with people with Alzheimer's disease, their families, health-care professionals, researchers and other national organizations. Tough Issues was well-received by thousands across Canada. It is now time for a new Ethical Guidelines document.
In the six years since those first cross-country consultations, there has been much change in the area of Alzheimer's disease. Increased awareness of the disease, earlier diagnosis and current treatments have provided new insights and understanding of how people experience Alzheimer's disease. Also, people with Alzheimer's disease are becoming more proactive in their search for information and support, and in their willingness to share their experience with others. As well, researchers are trying to identify where Mild Cognitive Impairment fits into the continuum of Alzheimer's disease. Is it the early beginnings of Alzheimer's disease? Would treatment be helpful? When does Mild Cognitive Impairment end and Alzheimer's disease begin?
To assist the Society in updating the Ethical Guidelines, consultations were held in the fall of 2001 and 2002 with people with Alzheimer's disease, caregivers, health-care professionals, researchers, and staff and volunteers of Alzheimer Societies across the country.
An Advisory Committee was struck, made up of experts from the medical, legal, research and nursing communities, as well as a person with Alzheimer's disease, family caregivers and Alzheimer Society staff. The committee reviewed the responses of the consultations, and also established a set of values and guiding principles to assist them in addressing the identified issues. These values and guiding principles are outlined on the following pages. As a result of this extensive process, a new set of Ethical Guidelines has been created.
As before, these revised Ethical Guidelines are designed to provide information and guidance to people with Alzheimer's disease and related dementias, their families, health-care professionals and researchers as they navigate the difficult issues raised by Alzheimer's disease.
The term "Alzheimer's disease" has been used throughout to indicate Alzheimer's disease and related dementias. However, the "Genetic Testing" guideline refers only to Alzheimer's disease.
The term "family member" is used to refer to relatives of the person with Alzheimer's disease.
The term "caregiver" is used to refer to the primary person providing care to the person with Alzheimer's disease. This person may be a family member, friend or other person.
"Health-care professionals" refers to those who provide care in a formal way, such as physicians, nurses, and management and staff in long-term care facilities.