Book Review: I'm still here
I’m Still Here. A breakthrough approach to understanding someone living with Alzheimer’s
John Zeisel PhD
Penguin Group (USA), New York
Alzheimer’s. Now there’s a diagnosis which gets your attention, whether it’s personal or for a loved one. It’s usually thought of as a sentence to a decade or more of forgetting. I cannot imagine a more devastating diagnosis, one which will affect millions worldwide this year.
John Zeisel’s new book I’m Still Here, based on his groundbreaking work at Hearthstone Alzheimer Care, offers hope. No, more than that, it presents a completely different way of perceiving, understanding, coping and caring. It teaches the possibilities of a positive relationship between the afflicted and the caregiver based on memories, learning, stories and visits.
Dr Zeisel has, over the last 15 years, developed and tested non pharmacological approaches to living with the diagnosis that incorporate art, music, environment, love, caring, and touch to stimulate the memories which remain and which do not diminish with time.
The book makes a strong case for a “glass half full” or more approach, for an attitude based on the present, living in the “now” and the recognition that the afflicted partner is still a human being with substantial remaining capabilities. We just need to understand how to find, acknowledge and support their expression.
Three environments are proposed – social, physical and pharmacological – to address what Dr Zeisel calls the four A’s – agitation, anxiety, aggression and apathy. The book is critical of the usual treatment of these conditions and is replete with specific suggestions of how to build a new relationship, and how to communicate, which, if followed, allows the caregiving partners to reach the inner self of both the patient and caregiver.
There is a wonderful chapter which describes new relationships that encourage the seeking of the potential of change. Many of these suggestions would improve our normal day to day communication and living, even without Alzheimer’s.
My own design work at Laguna Honda Hospital (LHH) in San Francisco benefitted greatly from Dr Zeisel’s pioneering work at Hearthstone. I know from our work at The Center for Health Design (CHD) that the built environment is a legitimate therapeutic modality.
There is a growing body of work which supports the use of evidence-based design for healthcare settings. Design can encourage independence and wellbeing for people with dementia at home or in an institution. The book presents eight major characteristics which support people living with Alzheimer’s: exit control; walking paths; privacy; shared spaces; gardens; homelike quality; sensory understanding; and support for independence and empowerment.
All of these were incorporated in the design at LHH and will be the subject of a pre and post research study in the CHD’s Pebble Project (visit www.healthdesign.org). I learned so much from this reading. I learned many things I did not know about the disease. I learned about its symptoms, its progression and its treatment. I learned that although it may not yet be curable, it most certainly is treatable. I finished the book feeling that I could be a much better caregiver if I am ever placed in that position. I felt I had a place to go for advice that is based on caring for the whole person, the person in the “now”, as well as a chance for enhanced communication and self-fulfillment.
I hope that should I ever live with this diagnosis, with a mere reduction of 10 out of my 90 billion brain cells, that my caregivers read Dr Zeisel’s book. In fact, I am going to change my Durable Power of Attorney to require them to do just that and to keep it handy. If only it had an index!
Derek Parker, FAIA, RIBA, FACHA
director, Anshen + Allen Architects