Alzheimer’s disease is devastating and yet new research is highlighting the islands of function and ability that can and do survive the tide of illness (for example see these earlier Digest items). In a moving and inspirational forthcoming book, “I’m Still Here“, John Zeisel – President of Hearthstone Alzheimer Care – has gathered together these findings and combined them with his own years of experience to create a positive, upbeat guide for how to relate to and care for people with Alzheimer’s.
Take, for example, research showing that people with Alzheimer’s retain their aesthetic tastes and even develop improved powers of creativity. As Zeisel explains:
“People living with Alzheimer’s are artists, performers, and an attentive audience. An artist expresses himself from his heart, avoids being overly self-critical, and can unselfconsciously expressive his ‘self’ in his art. The lack of a fully functioning brain ‘comparer’ makes many people living with Alzheimer’s better artists than they were before the disease. Just as inventive artistic personalities who have little regard for the rules of society are not deterred from their creative goals, even in the face of obvious difficulties, people living with Alzheimer’s are often freer, more honest, and more expressive than most others.”
One implication is that it can be a truly rewarding experience for patients and their carers to visit art museums and the book provides help and guidance for how to get the most out of these experiences.
Elsewhere, Zeisel draws on his expertise in architecture and design to provide advice on the kind of environment that is best suited for people with Alzheimer’s. For example, making different rooms clearly different from each other can help patients understand where they are; clearly marking exits can make them feel less anxious; and allowing patients some private place to put their own photos and memorabilia, to stamp their own personality, has been shown to help reduce anxiety and aggression. Zeisel explains how the layout of a building can also make a difference:
“For people living with Alzheimer’s the easier it is for them to comprehend and use an environment, the more empowered and independent they will be there. Naturally mapped residential settings and gardens, with visible landmarks indicating destinations and turning points, give them the opportunity to find their way. While wandering is often seen as a ‘symptom’ of Alzheimer’s, it is more realistically a natural tendency that everyone has to explore, to search, and to have a goal. In a setting that has no obvious layout, people living with Alzheimer’s wander. In a naturally mapped environment the same people walk.”
Tragically, there is as yet no known cure for Alzheimer’s and with an ageing population in the West, cases of the illness are set to spiral. Until a medical breakthrough occurs, this book – more of a personal guide than a dispassionate text – has the potential to offer comfort and practical advice in the form of non-pharmacological approaches, attitudes and interventions. As Zeisel says: “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.”