I'm Still Here: a breakthrough approach to understanding someone living with Alzheimer’s

A book by Dr. John Zeisel

Alzheimer’s disease cannot be cured, but it can be treated. People with Alzheimer’s can live long and fruitful lives but the approach to treatment of the disease and the patient must be re-examined and re-evaluated. In I’m Still Here, John Zeisel explores the Alzheimer’s mind. The average person has 100 billion active brain cells. Someone with Alzheimer’s has 90 billion, which shows that the Alzheimer mind is still functioning and when caretakers understand these intricacies, treatment is infinitely more effective.

I’m Still Here (and its underlying approach) acknowledges that the Alzheimer’s mind is a working, thriving, and creative mind. By understanding that the Alzheimer’s brain can still learn and process information, caregivers can react with a person with Alzheimer’s as a functioning being. John Zeisel stresses a course of action based on non-pharmacological treatments that can emphasize how parts of the brain function differently.

For the last 15 years, John Zeisel has spearheaded a movement that pushes a radical new Alzheimer’s treatment—embracing it. Following his success at creating care centres that acknowledge the challenges faced by the Alzheimer brain, John Zeisel developed a treatment philosophy based on the emotional self. Through specific features in each centre, he emphasized the senses and stimulated the altering Alzheimer’s brain. These included:

  • Walking paths
  • Different areas with distinct furniture and appearances
  • Shared spaces to promote communication amongst residents
  • Gardens to inspire and increase a feeling of freedom

Typically, pharmaceuticals treatments focus on the secondary symptoms rather than the primary. By focusing on the changes in the brain that cause primary symptoms and communication to treat the secondary symptoms, people with Alzheimer’s are better equipped to deal with their caregivers and vice versa. For example: the primary symptoms of the disease include loss of brain function and difficulty accessing memories. To treat these symptoms, he suggests creative endeavors to stimulate the brain and react to its changing machinations:

  • Trips to art museums that entice patients to then create their own works of art, channeling frustration and helping temperament (eg programmess in place at the MOMA and the Louvre)
  • Writing poetry
  • Participation in theatre
  • Reacting and responding to a familiar film

Typically, most caregivers react to the secondary effects: frustration at not remembering a name, agitation and not being able dress one’s self, anxiety at not knowing how to leave a room. I’m Still Here addresses this concern and opens the pathways to communication. For instance, rather than asking the person if they know who you are; Tell them “I am ...”

Over 5 million Europeans, 5 million Americans, and 25 million world-wide are living and functioning with Alzheimer’s. This number is expected to grow to nearly 100 million by 2050. I’m Still Here is an antidote to the fear-mongering that is typically related to Alzheimer’s.

This disease may not be curable but it is treatable.

About the Author

John Zeisel is President and co-founder of Hearthstone Alzheimer Care, Ltd. His background in sociology and architecture brings a much-needed inter-disciplinary approach. John has also taught at Yale and McGill Universities and at Harvard University's Graduate School of Design.

Before cofounding Hearthstone, John consulted to the senior housing industry and he has carried out research into the needs of seniors through basic and applied research. John is the author of numerous authoritative books and articles on the design of environments and care systems to best serve the needs of people living with Alzheimer's.

I'm Still Here cover

"I’m Still Here is a startling, uncompromising, and deeply compassionate look at how we care for people living with Alzheimer’s. It overflows with insight, practical advice, inspiration and hope."
—David Hyde Pierce, actor and Alzheimer’s advocate

"I’m Still Here offers a revolutionary, yet pragmatic, map for the compassionate care of people with cognitive impairments like Alzheimer’s disease. John Zeisel’s brilliant, softspoken, and heartwarming manifesto is a must-read for anyone whose life involves helping someone with these special needs, a guide to new ways to connect to the person, not the disease."
—Daniel Goleman, author of Emotional Intelligence

"Just as the Alzheimer’s “perfect storm” is about to strike with an anticipated tripling of the number of people with the disease comes a culture-changing book, I’m Still Here, with practical ways that enable families and professionals to look beyond the disease and then to find ways to emotionally connect with the person that is still there. This approach is truly an active treatment for dementia far more effective than any pill yet available."
—Paul Raia, Ph.D., Vice President, Patient Care and Family Support, Alzheimer's Association, Massachusetts and New Hampshire Chapter

"John Zeisel proves a theory that many of us who love someone with Alzheimer’s have suspected: that the person who is changed by the disease is still inside, waiting to be awakened and nurtured with love, with music, with paintings and with poems, as well as one-on-one communication and physical and mental exercises. As the number of people with Alzheimer's continues to rise, this is a wonderful, much-needed book."
—Mary Ellen Geist, author of Measure of the Heart

"A “must read” for all those who do—and all those who don’t—live with the symptoms of dementia."
—Richard Taylor, author of Alzheimer’s From the Inside Out