You met Sandra Demontigny, who has an early and inherited form of Alzheimer's.
The terrible thing about this type of Alzheimer's is that if Ms. Demontigny's father had it at age 41, she will have it anywhere from age 39 to age 43. Moreover, if her son or daughter has the defective gene, he or she will have it at age 41, 42 or 43. These individuals have a time bomb inside them and they know when it's going to go off.
Sandra is a wonderful spokesperson for people with Alzheimer's. She tells us in her own words what to expect.
Unlike others, she's fortunate enough to know when the time bomb is going to go off. So she's already been able to make arrangements for her estate and finances, among other things. She also works very hard to educate people. Individuals with the common form of Alzheimer's don't know when the time bomb is going to go off, but they're sure it will go off.
We have some tools to help us determine the course of the disease based on genetics. So far, 75 genes have been identified as risk factors. We also know that there are several environmental risk factors. We're not in the same situation today as we were 10 years ago, because we know how the disease evolves.
Personally, I tell the children of people with Alzheimer's to think about what they want to tell their families and children, including their wishes once the risk is clear.
Today, the only missing piece of the puzzle is for these individuals to be able to give advance end-of-life directives. I work with 400 people a year, and I can say that they give advance directives for all other aspects of their lives.
We've been able to educate these individuals by giving them a way to manage the situation or take control of it, to some degree.