Should Alzheimer sufferers and/or their families become involved in research projects?

Scientists around the world are working to find the cause(s), new treatments, and ultimately, a cure for Alzheimer's Disease. Researchers are also trying to understand better the psychological and social effects of the disease on individuals and their families. With this understanding, it is hoped that care and support can be improved. In order to further our knowledge of the disease, researchers needs to involve people at all stages of Alzheimer's Disease in their work. At some stage, individuals and families may have to decide whether to participate in some research project.

Benefits need to be balanced against risks.
It should be recognized that participation of someone with Alzheimer's Disease in research often places demands on their family and caregivers. They should be involved in the consent process and in assessment of the consequences of participation. Balancing risks and benefits of Alzheimer research is difficult for all concerned. It requires consideration of the effect of the research not only on the people affected but also on their families. Many people and families affected by Alzheimer's Disease take comfort and satisfaction and find hope, in being able to help increase understanding about the disease and its effects.

Participation should be voluntary.
The desires of the person with Alzheimer's Disease should be primary when considering participation in research. A research team has an obligation to determine, to the best of its abilities, that the decision has been guided by the person's wishes and/or that it is has been made with the person's best interests in mind. There should be a way of determining a participant's ability to provide informed consent and this assessment should focus on the ability of the person to understand the nature of the research, appreciate the consequences of participation in the study and understand alternative choices. There should be ongoing communication throughout the research process. It is essential that the research team maintain an ongoing dialogue with the individual, with family and with care providers. From time to time throughout the study, the person's agreement to participate must be re-confirmed.

As decision-making abilities decline, a substitute decision maker will have to act on the person's behalf. It is best if that decision-maker has official power of attorney and has been made aware of the patient's desires early in the progression of the disease. Those conducting the research must continue to communicate and seek permission for ongoing participation from the substitute decision-maker. Involvement is voluntary, and individuals have the right to decline participation or withdraw from a study at any time. Throughout a research project, all involved should continue to evaluate the balance between the risks and benefits, and re-confirm the commitment of individuals and families to participate in the research.

Guidelines should be followed and safeguards in place.
As the disease progresses, those affected become increasingly unable to appreciate the consequences of their involvement. Thus they become increasingly vulnerable and decisions to participate in studies can become more difficult. It is imperative that safeguards be in place to ensure that people with Alzheimer's Disease are not put at undue risk or exploited in any manner. In most areas, there are official procedures in place to evaluate the risks and benefits of a specific study and study projects must be officially approved. There will be a set of guidelines which must be followed. The specifics may vary from place to place, but there are certain principles that should be followed.