This book is not a primer on dementia. It does not describe in detail the natural history of dementia, its symptoms, varieties, diagnosis, or treatment options. There are many authors who have done a thorough job of explaining these.

This is also not a review of the newest research studies attempting to find a cure or a means of arresting the progress of dementia. Like everyone, I hope we will find a cure for this devastating disease. Based on our history with other neurological diseases, however, we must accept the fact that such a cure may be slow in coming, and that there are millions of people living with dementia today who still need our care and attention. If you have picked up this book, you may be a health care professional or a family member who cares for someone with dementia, or possibly you yourself have been diagnosed with some form of the disorder. You may have read other books about it, studied it for your career, listened to talk shows on dementia, or contacted your local Alzheimer's Association for more information. Perhaps you work in a care setting where dementia is prevalent.

My own work in elder care has followed a unique, dual pathway. As a board-certified internist and geriatrician and a full-time nursing home practitioner for over 18 years, I have treated thousands of people with all forms of dementia.

I am also an Educator for the Eden Alternative, the largest of the growing number of movements worldwide that are working to transform elder care, and with it our societal view of aging. Being both a practicing physician and an advocate of "culture change" in elder care puts me in a unique position to assemble all I have learned about the biomedical approach to dementia and reframe it within a new model of care. Much of the information in this book comes from the pioneering efforts of other people whose work has greatly affected me. These people are too numerous to mention here, though you will read about them throughout the book. There are, however, a few individuals who have profoundly influenced my thinking. Dr. William H. Thomas, a Harvard-trained physician, decided to try his hand at working in a nursing home in the early 1990s and became the architect of the Eden Alternative, which now boasts hundreds of member nursing homes in North America, Europe, Oceania, and Asia. Over 20,000 people have had formal training in the Eden philosophy and process and (along with other innovators, represented by organizations such as the Pioneer Network) they are turning our sterile institutions into vibrant, life-affirming homes where the frailest elders and their care partners can thrive and grow. Bill and his wife, Jude Meyers-Thomas, continue to be outspoken advocates for elders worldwide.

But the work of such pioneers represents only a few waves in an ocean of elder care settings around the world, and nowhere is the need for transformation more critical than in our care of people with dementia.

Another pioneer who deserves significant credit for my personal journey is the late Tom Kitwood, a psychologist who founded the Bradford Dementia Group in England, and whose "person-centered" approach to people with dementia has helped form much of the foundation for my further work. His group continues to serve as an important resource for a more humane, relationship-rich approach to people with dementia. We need to do more than simply adjust our thinking about this disorder.We need to radically alter the way we look at the challenging behavioral expressions so commonly seen in people with dementia. As I will relate, our biomedical approach is inadequate to the needs of our rapidly increasing population living with dementia, and it compromises the well-being and personhood of millions of people around the world. It is only through a radical transformation of our system and approach to care that we can hope to turn the tide.

Thus I am adding yet another volume to the mountain of books on this common, life-altering condition. My hope is that this book will help rebalance our approach to people with dementia and motivate us to promote a change of direction in their care. The first part, Paradigms and Problems, looks at the current view of dementia and its behavioral expressions and reviews some alarming medication trends worldwide. Next, it examines the research upon which current prescribing patterns are based, but with a different perspective than most of the medical establishment has entertained thus far.

The next chapters in Part 1 describe in detail the problems with our current model of elder care. There are other books on culture change that address the topic very well, but I believe it is important to review this in a manner that speaks directly to the care of people with dementia.

There are those who believe that this topic doesn't require a lot of explanation because the problems with our institutional model of care are well known by now. I disagree. There are many people giving lip service to "culture change." Even the Centers for Medicare and Medicaid Services (CMS) has adopted the buzzword. But when it comes to the care of people with dementia, either our understanding of this concept is so limited or else our traditional approach is so deeply ingrained that we don't even realize how institutionalized our attitudes have become! In his video Everyday Creativity (1999), photographer Dewitt Jones observes that patterns and structures are "incredibly important. We can't function without them. But we all know that if we let these patterns go too long unquestioned, they become our prisons." For this reason, I will expend some effort to show that our approach to care needs a radical overhaul.

In the second part of the book, Shifts, we will use what we have learned to craft a new experiential model for viewing dementia. This model will enable us to create a world in which even people with advanced dementia can experience well-being and growth, with little or no medication. The chapters in this part will also begin to lay out the process for transforming from a biomedical to an experiential approach to care in all settings. The final part, Solutions, applies the experiential model to offer some specific approaches to caring for people with dementia, and gives concrete suggestions for understanding and responding to many behavioral expressions that are commonly seen. The book closes with stories of people who are already making this transformation, whose successes will show us where we need to go.

I have an important reason for saving this discussion for the very end. Despite much information on nonpharmacological treatment of dementia, in practice most people fall back on medication use at some point. My work with the Eden Alternative has helped me to understand why this happens. Nonpharmacological approaches will never fully succeed until the underlying culture of care can be transformed. I cannot emphasize this enough. If you try to use the suggestions offered in the back of the book without doing any of the difficult and challenging work of truly changing the care environment, then you will not realize the full benefits. There are no gimmicks; this is not a "10 Quick Steps to Success" book. Hard work and dedication are required, but the need is critical and the rewards are great.

In my own practice, I have been able to care for people with dementia with only a small fraction of the psychiatric medication that most people use, even though St. John's Home is still at a fairly early stage in the transformational process. Sustaining such success, however, requires the ongoing effort of the entire organization.

Nevertheless, we can take these successes and the very real benefits that many of us have seen, and create a road map that shows where this journey can take us, if we dare to embark. This book will also explain what each of us can do today, no matter where we are, to take the first steps.

As I write these words, my wife and I — now "empty-nesters" — are in the process of downsizing to a smaller home. I have packed old files, mementos, and other pieces of "my life so far" into boxes. At some point after we relocate, I will simply unpack the boxes and retrieve the contents. But how would I feel if I opened a box and didn't find what I was looking for? What if one or more boxes were lost by the movers and I could never retrieve that piece of my life and all of its meaning?

This must be the dilemma of a person who faces progressive memory loss — the inability to retrieve important pieces of one's life, which can lead to a loss of self. After living with dementia for six years, Dr. Richard Taylor (2007) shared his experience:

Sometimes, when I am alone with my thoughts, I wander aimlessly around the corridors of my mind. I open various doors to see if they are still full of the memories I stored there years ago. To my pleasant surprise, most of them seem to contain all that I remember putting in the room. However, as I move from the past toward the present, I find more and more empty rooms. Not only are they empty, they are dark. They offer no clue, other than the label on the door, as to what they once contained. . . . It is very unnerving to be in the midst of a conversation and all of a sudden need to open the door to a room to access its contents and — the room is dark. I don't have a clue. (p. 35)

This loss of stored memories can be accompanied by the inability to perform other previously simple functions, such as balancing a checkbook, driving to the store, even putting on one's clothes in the morning. As I reflect on this, it is all too clear to me that if we are to provide the best care for people with dementia, we need to spend a lot more time trying to understand what it feels like to live with dementia. This is what I call an experiential approach to dementia, and it will challenge many of the "truths" that are shared about the disorder...