Book Review: Staying Connected While Letting Go

by Sandy Braff, M.F.T., and Mary Rose Olenik
New York, M. Evans and Company, Inc., 2003,
254 pages, ISBN 1590770129, $21.95

Stephen Jamison, PhD

Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving addresses the experiences, emotions, and coping strategies of spouses who care for loved ones afflicted with Alzheimer's disease (AD). Drawn from hundreds of interviews with research participants in an AD caregiver study, and using composite stories from key members of an Alzheimer's support group, this book provides insights into the workings of progressive dementia, a sympathetic understanding of the course of the disease from the perspective of caregivers, and useful strategies for caring for one with dementia and dealing with one's own complex emotions through all stages of the disease.

The authors, Braff and Olenik, provide a balanced, realistic depiction of these daily experiences, emotions, and concerns of caregivers, and the paths that some have followed to ensure their own survival. Vignettes are interwoven with valuable information for caregivers throughout the course of the disease. Following AD from its initial symptoms, the book raises the question, "When does forgetfulness become a clinically significant problem?" It details the initial effects of AD on memory, learning, and judgment that begin with gradual deterioration in the brain, then clearly describes the continued disruptions in language, motor skills, recognition of objects, and disturbances of executive functions such is planning, organizing, sequencing, or abstracting.

Personal stories are used to provide examples of each. In one, a wife seeks answers to her suspicions when she comes face-to-face with the financial chaos caused by her husband's failing judgment. In another, a woman finally decides to share the diagnosis with others when her husband's behavior suggest a dangerous loss of social boundaries as he takes it upon himself to deliver neighbors' mail, helpfully walking into houses when doors are unlocked.

Braff and Olenik discuss the importance of seeking a diagnosis, stressing that some symptoms of AD and other forms of dementia are treatable. Clinicians also will readily see the importance of pursuing the workups that will hopefully provide answers. Instead of a death sentence, the diagnosis of possible or probable Alzheimer's can help caregivers, family members and patients better adjust psychologically as they begin to make the practical legal, economic and social changes needed to limit the potentially chaotic impact of the approaching storm.

By using details from these poignantly candid stories, the authors provide invaluable advice and show how those who confront AD in a loved one can still cope, provide quality care and function at their highest potential even as this illness- gradually though relentlessly-takes away a loved one's memories, motor skills, ability to reason and communicate, their awareness of the present and even their very personalities.

By taking the perspective of the caregiver, Staying Connected does more than merely detail AD syptomatology. It meaningfully describes the loss of mutuality, stability, consistency and shared expectations, communication, physical intimacy and partnership that serve as the base in relationships, and how this disease also can rob the victim of those personality traits that may have led to a couple's initial attraction and sometimes replace them with opposite traits. In this way the book raises difficult questions, such as, "What is personhood when one's unique personality is forever lost?" and "What can continue to motivate and provide strength to caregivers when all that defined the relationship has vanished?" Nor does the book shy away from other difficult subjects, whether it's combating a patient's socially inappropriate behaviors or loss of inhibitions, or fulfilling one's own desire for sexual intimacy, or coming to terms with inevitability of placement.

Braff and Olenik cannot stress enough the benefits of communication and the need for caregivers to seek support from family members and professionals as well as from support groups where they can share a common language of experiences and feelings and can talk openly and be understood in ways they might otherwise find impossible.

In many ways, this book can transform the way all readers come to view the day-to-day experiences of caring for the Alzheimer's patient. The importance of this cannot be over-emphasized, especially since nearly one-quarter of American households currently provide care to someone age 50 or older, and given that the number of people afflicted with Alzheimer's disease will only increase with changing demographics.

For caregivers and families, it carries a compassionate though realistic message of understanding and hope. Grounded in stories from the front lines, this book can serve as a safe introduction to the topic for the "just recruited" soon-to-be caregivers as well as a supportive friend to those hardened but battle weary. It provides precise psychological explanations for every step, which serve to supportively guide the caregiver into a new way of viewing both their experiences and the changes in cognition and behavior of AD patients themselves. It further encourages caregivers to change in meaningful ways their own negative beliefs and old behavioral patterns to optimize the experience for themselves and their loved ones.

Though written primarily for the lay audience, Staying Connected While Letting Go, based on Braff and Olenik's professional work and research with caregivers also should be considered a valuable resource for physicians and other health professionals as they seek to understand the needs of their patients and support family members though the process. For health professionals, who may see Alzheimer's patients for only a short weekly or monthly visit, this book provides a window into the AD patient's world and, in particular, into the daily lives and psycho social experiences of caregivers whether they are witnessing the earliest symptoms for the first time or providing more than 167 weekly hours of assistance at later stages in the illness.

Stephen Jamison, PhD, is a social psychologist and director of the Aid in Dying Communication Project. He also is the author of Final Acts of Love, families, friends and assisted dying (Tarcher-Putnam, 1995), and Assisted Suicide: a decision making guide for health professionals (1998).