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By Mary Bolster

A Dementia Handbook for Patients and Families


In an ideal world, we'd all have doctors who could spend endless time with us, imparting important medical information, arriving at accurate diagnoses, offering resources, and providing comfort and support. In the real world, doctors do not have unlimited time with their patients. That is just one of the reasons James M. Noble, MD, FAAN, an Alzheimer's disease specialist, wrote a book about dementia.

Dr. Noble sought to create something that patients and their families could read at their own pace for additional information and resources, other patients' experiences, and some sense of the road ahead. The result is Navigating Life with Dementia, the latest title in the American Academy of Neurology's Brain & Life® Book series, published with Oxford University Press. He hopes it will provide answers to questions patients and family members may have forgotten to ask during an appointment and resources that go beyond the doctor's office. “There's always so much more we could talk about during a visit,” he says. “This book can fill in the gaps.” During an interview, Dr. Noble, who is associate professor of neurology at the Gertrude H. Sergievsky Center and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain at Columbia University Irving Medical Center, shared more about the book and dementia.

What can readers expect from this book? I wanted it to unfold as a series of office visits. The early chapters are about the differences among normal forgetting, mild cognitive impairment, and dementia; how the brain works; and tests to assess memory loss and cognitive and behavioral problems. The middle section turns to specific diagnoses—Alzheimer's disease, frontotemporal dementia, vascular dementia, and Lewy body dementia—and treatments for various symptoms. Later in the book, I cover how dementia progresses and resources for planning for the future.

Why is an early diagnosis important? It gives a name to an experience, which helps frame the problem, treatments, and a host of important decisions. New patients almost always have an inkling that something's wrong; validating their concerns can be reassuring. Having a diagnosis also helps patients and their families clarify plans and determine how to proceed. And if their dementia is in the early stages, they may be able to participate in research studies. A firm diagnosis also helps anticipate and avoid catastrophic injuries or accidents that could threaten a patient's independence. I help families create a supportive plan for future contingencies like, say, relinquishing a driver's license.

Are there common fears your patients express? Everyone is afraid of the unknown. Many patients wonder what the future holds. They know that more memory loss lies ahead, but they don't know how fast the disease will progress. The timeline is different for everyone, so it's difficult to predict the journey. I wrote this book in part to allay these fears and provide navigation for those who feel lost at sea.

How do you prepare patients and families for the progression of dementia? I try not to overload them with information in the beginning. I share it at appropriate points along the journey. In the book, I tried to mimic that process. People can skip ahead, but the first few chapters are really designed for someone in the early stages. With each new visit, I address any changes and explain the next phase and what might be anticipated.

How does dementia affect the way people with the diagnosis live? Dementia changes the way our brains operate. It can alter our personhood and family dynamics in complex ways. One of the challenges of living with it is how we judge ourselves and how others see us. But even in later stages of the disease, people with dementia can feel connection and joy. They may still tap their toes to favorite music or smile after eating a pleasurable meal. These brief moments can be very meaningful in sustaining relationships with loved ones.

What can families do to interact with those with dementia? Every person is different, but in general, I advise families to encourage loved ones to remain physically active and socially engaged. They might look at old photographs together, play games, visit museums, take walks, or just be with each other. I also suggest building a support network of allies who understand dementia and are comfortable being around someone with the condition. Most importantly, I recommend that people make major decisions early on about how they want to be cared for before they are unable to participate in that process. If that time has passed, I urge families to make decisions collectively and make sure all perspectives are considered.

What are the key takeaways from the book? The biggest one is that a dementia diagnosis is not the end of life. It's another phase of life. This book is designed to help people live as fully as possible with dementia. I also try to make it clear that dementia in all its iterations is not a part of normal aging. It's a distinct disorder that can and should be diagnosed and managed. The book is an entry point for this journey. This book is no substitute for the direct care of a neurologist, nor can it replace a support group, but I hope it provides some comfort, guidance, and a clear path forward.

Navigating Life with Dementia is available from all major booksellers.