I’m Still Here by John Zeisel: an extract for World Alzheimer’s Day

Piatkus author John Zeisel is an innovator in the non-pharmacological treatment of Alzheimer’s. Following is a short extract from I’m Still Here, which outlines his groundbreaking approach and demonstrates how we can offer people with dementia a better quality of life and a connection to others and the world.

Many people as they grow older forget one thing or another. This is not Alzheimer’s. I’m Still Here provides a human understanding of the profound changes the person with Alzheimer’s is going through. This understanding alone is the greatest defense against the fear we all live with—a fear that the research and other fundraising communities unfortunately promote in their desire for funding. Understanding also leads to compassion —a necessary ingredient for treating oneself well and for being able to give of oneself to the other person throughout the illness.

A life with Alzheimer’s can be seen as a glass mostly full or completely empty—and each is a state of mind. This book lays out a positive view of living with Alzheimer’s that can lead to a life with quality for all involved as well as to effective treatment. The Alzheimer’s glass is more than half full in this book.

A person living with Alzheimer’s is first “a person” and only then someone with a disease. The way the world sees Alzheimer’s today is that a person is almost totally lost once he or she receives an Alzheimer’s diagnosis—lost both to themselves and to those who love them. An Alzheimer’s diagnosis is seen as an Alzheimer’s “sentence.” But this just isn’t so. Throughout the more than decade-long progress of the disease, the person is crying out, “I’m still here.” We all need to start hearing that cry before it fades away completely.

This book describes how much remains alive and vital in the brain of a person living with Alzheimer’s disease and shows how certain parts of the brain even enable someone living with the disease to function more sensitively than before. If we rely primarily on drugs to alleviate the symptoms of Alzheimer’s—or what most people assume to be those symptoms— there is little available treatment at present. Some cognitive enhancement drugs have some effects; many have side effects. Some mood drugs can reduce disturbing behaviors, often at the price of reduced quality of life.

In order to assess the impacts of medications and of nonpharmacological treatments on Alzheimer’s symptoms, we need first to agree on what are symptoms and what are not. For example, we know that one symptom of Alzheimer’s is difficulty dealing with complex situations, and that when a person faces these difficulties, she often gets frustrated, agitated, and sometimes aggressive. The symptom is loss of executive function in the brain’s frontal lobes and the concomitant difficulty dealing with complex events. The other effects are actually secondary or tertiary symptoms, if they can even be called symptoms at all. In the next chapter I articulate these differences and explain how important it is to see them, in order to be able to develop treatments that work and for partners to develop meaningful relationships with the people living with Alzheimer’s.

Nonpharmacological environmental and behavioral treatments can have dramatic results with few side effects. Symptoms that everyone thought were integral to the disease can be reduced. There is a new message to be heard: “People living with Alzheimer’s are still people. Alzheimer’s is treatable. Don’t give up.”