We just received our diagnosis. What do we do now?
People who are diagnosed with Alzheimer’s disease often get two pieces of advice, each helpful but each limited. One is to try your best to plan for the future and the other is to live day by day.
Planning for the future is always wise. As soon as the diagnosis is made there are a number of questions that will come up. At the same time, it is important to realize that this is not an emergency and that things will not dramatically change overnight. Still, it is sensible to plan for things such as putting in place a power of attorney, a living will or other type of future health care directive. It is also worthwhile to make decisions about how finances are to be handled. Driving is a question that will inevitably arise and it is best to plan for it.
A person with Alzheimer’s disease is going to want to know how the future is likely to change- what is the chance of a good response with treatment? What is the chance things will get worse? In truth, a lot of this is unknowable for the individual and the best we have to offer is statistical advice. It often takes 3-6 months before any firm decision can be made about how responsive treatment will be, so again there is the question of uncertainty.
This is where the second piece of advice “live a day at a time” comes in. People with Alzheimer’s disease are no different from anyone else and certainly not different from how they were before the diagnosis. They want very much the same things. At the same time a worry for the future can impair their ability to appreciate each day. That is why it is important to savor the good health of each day and be aware of each day’s blessings.
One thing that happens sometimes is that people with Alzheimer’s disease lose the ability to think of themselves in the future. They have difficulty imagining a future where they are not competent. For sometime, to the extent that the physicians were aware of this, they thought of it as a psychological reaction. In other words, the person with Alzheimer’s disease was overwhelmed by the diagnosis. Treatments with drugs that increase the amount of acetylcholine have shown the ability to think of the future often returns with treatment. It seems that the ability to think of one’s self in the future as a competent agent is one of the important and up to now largely unrecognized functions of acetyl choline.