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Silverstein, Nina M. Flaherty, Gerald.

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Tobin,Terri Salmons. IV Title.

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Today an estimated 4 million Americans suffer from this devastating illness. And unless we find a cure, this number is expected to explode to 14 million by as the Baby Boomers come of age. This investment in science is crucial to finding a cure, and I have no doubt that one day children will have to look to the history books to learn about Alzheimer's disease. But until that day arrives millions of Americans will continue to face the challenges of Alzheimer's not only as patients, but also as family caregivers living with an immense responsibility.

Until we find a cure, this nation must continue to create and to invest in programs designed to improve the lives of those affected by this illness. One crucial and unique federal program is called Safe Return. The Safe Return Program was established nationwide to assist in the identification and timely recovery of people with Alzheimer's and related dementias who wander and become lost.

Each year, the Alzheimer's Task Force has been successful in securing full funding for this incredibly important program. Unless one has dealt directly with an Alzheimer's patient, it's difficult to imagine the day-to-day challenges associated with caring for a loved one with the disease.

The stress is further amplified by the need to keep constant and vigilant watch over the ambulatory Alzheimer's patient as the disease progresses. Public awareness of Alzheimer's disease is crucial for a variety IX x Foreword of reasons—but it is perhaps most crucial in order to provide a community safety net for the Alzheimer's patient who is lost and wandering In Dementia and Wandering Behavior: Concern for the Lost Elder, authors Nina Silverstein, Gerald Flaherty and Terri Salmons Tobin provide an excellent resource for building public awareness. This easy-to-read book offers concrete suggestions for the range of professional caregivers in community and institutional settings, for people with dementia and their families in the community, as well as for first-responders such as police and search and rescue personnel.

Dementia and Wandering Behavior: Concern for the Lost Elder speaks to the risks associated with wandering behavior and demonstrates that acknowledgment of these risks leads to early precautions to avoid them. This in turn can lead to reduced stress on caregivers, greater autonomy for people in the earlier stages of the disease, and increased safety for anyone with Alzheimer's who is ambulatory. Ultimately, Dementia and Wandering Behavior: Concern for the Lost Elder provides invaluable information to help Alzheimer's patients remain longer and more secure with their friends and families in the community, and more safe with their caregivers in facilities.

The authors embrace the goal that we as a nation should all embrace—the goal of enhancing the quality of the lives of people with dementing illnesses like Alzheimer's disease. It robs us all of their companionship and wisdom. The great burden of dementia is not from the patient's forgetting his neighbor's name, it's from wandering into his neighbor's home.

Our first obligation is to protect the patient and this book provides practical advice for achieving that goal. Alzheimer's disease creates deficits in a variety of domains. It is not simply the loss of memory, but also of language, judgment, and spatial orientation. The mode of presentation and sequence of progression is highly idiosyncratic, but one-third to one-half of the patients have spatial orientation loss early in their illness and these patients are thought to be especially prone to wandering. Our work at the University of Rochester, and that of our colleagues around the globe, is revealing the neural mechanisms of spatial disorientation in dementia.

Alzheimer's patients who get lost in familiar surroundings have an impaired capacity to see the patterned visual motion of optic flow.

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Optic flow informs us about the speed and direction of our self-movement and about the three-dimensional structure of the visual environment. Alzheimer's patients do not get lost because they have forgotten where they are going, rather, they get lost because they cannot keep track of where they have been. After facing the tragedy of a dementia diagnosis, these patients confront a succession of painful realizations: realizing that the lifelong habit of automobile driving must be abandoned, that routine independent excursions must be curtailed, and that an independent household can no longer be maintained.

Episodes of wandering and getting lost accelerate the relentless cycle of isolation and loss of independence. Health care professionals, caregivers, and family members struggle to keep patients safe and help them adjust.

How to handle the problem of getting lost in elders

Unfortunately, appropriate responses are XI xii Preface commonly impeded by a failure to fully recognize current impairments and further changes on the horizon. The best way to prevent this is by understanding the disease and its consequences. That understanding can begin with this book. This book is divided into three parts. The first part deals with defining dementia as the progressive loss of functional capacity due to neurological deficits. A review of the pertinent literature is provided that emphasizes the enormity of the problem of wandering, and its devastating consequences.

The diverse manifestations of dementia, its epidemiology, and its differential diagnosis are then described. This presentation offers a framework that is helpful to the professional while providing level of detail that is suitable for those who are new to the subject. The second part deals with community responses to wandering. The presentation of general principles is extensively illustrated by specific examples from the authors experience and the literature.

The focus on wandering allows a comprehensive description of the problem and a detailed elaboration of what various community programs and institutions can do to help.


In particular, the utility of the Safe Return Program is aptly exemplified and important resources for advice and useful appliances are provided. The third part of the book addresses the needs of a variety of individual care providers. Chapter 7, on creating a safe home environment, provides the benefits of extensive experience in a clear presentation.

This chapter, and others, include a number of useful lists that concisely describe the dos and don'ts of home care. Chapters 8 and 9 describe what is needed to create a supportive living program that educates staff and protects patients. Finally, Chapter 10 provides expert advice for the many community-based professionals, from social services to law enforcement, who are often called upon to rescue the wandering elder. Alzheimer's disease impairs sensory processing, robbing patients of the ability to extract experience from sensation. This undermines their capacity to share in everyday life and isolates them in a world of their own.

This is the world in which they wander. Until dementia can be controlled, cured, and prevented we must make every effort to bridge these worlds with compassion and knowledge. I commend the authors on this worthwhile contribution to that effort. For finding our own way to the book, and through it, we acknowledge the several million people who have Alzheimer's disease or a related disorder, and the hundreds working in the Alzheimer's Association's Safe Return Program nationwide. Many others helped. Our list is not prioritized, and we suspect we may have missed a few.

We thank the caregivers who participated in both our quantitative and qualitative research efforts. In the interim between the Silverstein and Salmons study in and the Salmons study in , author Salmons now Salmons Tobin was a "walking buddy" for the late Clayton Sibley.

Insights gained through her experiences with Clayton and his wife Diane contributed greatly to her doctoral research and to the awareness we hope to generate by using parts of it here. The Gerontology Institute and Center at the University of Massachusetts Boston supported author Silverstein's initial exploration into this topic by providing resources under the auspices of the Elder Action-Research class of the Gerontology certificate program. UMass provided a supportive environment for Salmons Tobin, who received a graduate award while there from the Association of Gerontology in Higher Education and the AARP Andrus Foundation to support her doctoral research on wandering behavior.

PART I Introduction This page intentionally left blank Most of the time I forgot I had Alzheimer's in the earliest days until I realized one morning that I could not visually map out in my mind where I was supposed to go that day and it was a place I frequented.

I had a hard time coming to grips with this loss of visual memory. It was this realization that made me talk to my family and get help. I have not worried about getting lost because, since that day, I do not leave the house by myself To not be able to create a map in your mind is so scary.

Should patients with dementia who wander be electronically tagged? No

Member of a support group for people with early stage dementia Summer Introduction For people with Alzheimer's disease or a related dementia, wandering away from home or a care facility and becoming lost is the most life-threatening behavior associated with their illness. For family and professional caregivers, it can be the most emotionally wrenching event in their caregiving experience.

Public awareness concerning Alzheimer's disease has increased in the past decade, but for the estimated 4 million people in the United States with Alzheimer's or a related dementia, these services remain few and far between. The most likely reasons for the low level of supportive assistance appear to be that at-risk elders do not self-report their medical or other problems, and public resources to locate high-risk elderly or to serve people with Alzheimer's disease and their caregivers are uniformly lacking Raschko, ; Silverstein, Congress, They are our neighbors and, for those in the elder service field, our clients.

And they are, by definition, at risk. Their often isolated environment lends itself to the psychiatric complications 3 4 Introduction of dementia, such as hallucinations and delusions, which, in turn, are conducive to wandering. As Flaherty and Raia wrote, "If the best current, practical and humane treatment for people with dementia is the almost constant reassurance they receive from others, then people with dementia who live alone spend their lives in an unenviable place, where the real fears associated with our noisy and sometimes dangerous cities, or our isolated suburbs, are only enhanced by the effects of dementia" p.

This population constitutes what social researcher Raymond Raschko has called "a social policy time bomb.