In Print : Alzheimer's with love
John Zeisel, Ph.D. "I'm Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer's," Avery, 262 pp. $24.95
In his new book "I'm Still Here," Chilmark summer resident John Zeisel takes a deeply encouraging approach to the care of Alzheimer's patients. The author of books on environmental design, neuro-architecture (the science of how buildings affect human thought and emotion), and the elderly, Mr. Zeisel lays out the approach used at the seven Hearthstone Alzheimer's Care Centers in Massachusetts and New York that he co-founded and oversees. It is a must-read for anyone who has a family member or friend coping with the degenerative brain disease.
Alzheimer's has no cure, but it can be treated. Mr. Zeisel's premise gives precedence to non-pharmacological treatments like therapeutic gardens, environmental design, caregiver communication training, family participation, alternative healthcare, diet, and exercise. Most significantly, it proposes a crucial role for the arts in giving those with the disease the chance to lead fuller and more productive lives than medication alone provides.
Hearthstone Alzheimer's Care does not ignore the role of medication, but it looks for alternatives first. In some ways, those with Alzheimer's function more sensitively than before, according to Mr. Zeisel, who received his Ph.D. from Columbia University. He explains that "people usually live with Alzheimer's for over a decade and for much of that time they can function with less help than most people think, enjoy themselves, and even learn new things."
Contrary to popular assumption, those with Alzheimer's do not "lose their memories." Memory retrieval is the brain function that becomes impaired, but art, music, environment, and appropriate communication can help an individual with the disease access memories.
In its 11 chapters, "I'm Still Here" presents the case for treating the people first, and their illness second. The book also dispels many of the myths about Alzheimer's. The disease, for example, does not destroy an individual's sentient future; it brings different brain skills into play.
Many critical powers of observation remain intact in the brain, as do the feelings associated with certain kinds of memories. The symptoms often associated with the illness - apathy, anxiety, agitation, aggression - are secondary and not caused by the disease's degenerative changes in the brain. In fact, many of the behaviors accepted as Alzheimer's-based are not symptoms of the disease at all.
"Expressing love to someone living with Alzheimer's is one of the keys to making and keeping contact," Mr. Zeisel suggests. While this might seem like a simplistic approach to a complex problem, it is based on research conducted by Mr. Zeisel and other members of the Hearthstone Foundation.
Dr. Zeisel points out that correctly defining and distinguishing between degrees of symptoms allows caregivers to treat the disease and its symptoms appropriately. Understanding the sequence of events that may trigger negative behaviors helps alleviate them.
By the time an individual suffering from Alzheimer's dies, his brain may have lost up to 40 percent of its weight. That stark fact deemphasizes the resources of the remaining 60 percent and his ability to continue functioning. Those living with Alzheimer's tend to retain the skills they acquired earliest in their development. Touch, facial expression, and singing, for instance, remain intact the longest.
Understanding Alzheimer's as loss of short-term memory and retention of long-term memory is an unhelpful oversimplification, according to Mr. Zeisel. While it might appear that an individual has forgotten how to perform simple tasks and has lost control over basic impulses, the problem is not about forgetting. Through what is called "spaced retrieval," Alzheimer patients can learn new information and remember it.
The most exciting chapters in "I'm Still Here" address the ways in which the arts can play a productive role in the lives of individuals with Alzheimer's. Mr. Zeisel and his research colleague Sean Caulfield founded ARTZ (Artists for Alzheimer's), a program that involves Alzheimer's patients with working artists, whether visual, literary, dramatic, musical, or circus performers. The goal is to offer those with Alzheimer's artistic experiences, both as appreciators and producers in a safe and supportive environment.
The book also discusses how Alzheimer's facilities can be designed in ways appropriate to amelioration of the disease, an area in which Mr. Zeisel has considerable expertise. Emphasis is given to the important role family members can play in providing a positive environment for individuals with Alzheimer's, and the author lists organizations, programs, and types of care available to Alzheimer patients.
Mr. Zeisel lists many of the gifts Alzheimer's Disease offers, like a heightened sense of humor or ability to enjoy the moment. His appreciation for the parallels between Alzheimer's patients' perception of time and the concept of "present-ness" in meditation have also led him to include a discussion of how mindfulness and meditation can be incorporated into care of the individual living with Alzheimer's. Written in accessible, layman's language, "I'm Still Here" offers hope for those affected by a devastating disease.