Related Topics: •  Alzheimer's Disease

Mapping Alzheimer's Care


Reviewed by Michael Castleman
CONSUMER HEALTH INTERACTIVE

Navigating the Alzheimer's Journey: A Compass for Caregiving
By Carol Bowlby Sifton
Health Professionals Press
652 pp $24.95

Becoming a caregiver for a loved one with Alzheimer's disease is like being dropped into a rowboat far from shore in the middle of a storm with no radio, no compass, no idea how to pilot your little craft to safety. In Navigating the Alzheimer's Journey, Carol Bowlby Sifton provides the compass and a clear, wise, reassuring guide to caregiving.

No book can make Alzheimer's caregiving easy. Sifton's vignettes and the issues she discusses show that caring for someone with Alzheimer's is one of life's most challenging, relentless, and crazy-making endeavors. But Navigating the Alzheimer's Journey is the best book yet to point the way toward both loving, enlightened caregiving and compassionate self-care for caregivers.

Sifton has impeccable credentials. A former family caregiver for her mother-in-law, she has been involved in dementia caregiving since the 1980s. She is a dementia consultant to several long-term care facilities. She has worked as the clinical coordinator for geriatrics at Victoria General Hospital in Halifax, Nova Scotia. She is also the editor of Alzheimer's Care Quarterly, and author of previous books on dementia care for medical professionals.

Navigating the Alzheimer's Journey lacks an index, which is unfortunate, but it has a good table of contents, which comes in mighty handy when consulting this big, sprawling book.

The book opens with excellent discussions of two issues central to caregiving -- the need for caregivers to take good care of themselves, and the transformation of care recipients from people with pasts, presents, and futures to people whose lives increasingly become focused on the present moment.

Sifton agrees with other experts on caregiving that too many Alzheimer's caregivers martyr themselves. This is a colossal mistake. If you don't take good care of yourself -- which necessitates adequate time off -- you simply cannot provide good care. You're also very likely to become not only resentful of the person you're caring for, but even physically ill. Many studies show that caregiving is so stressful that it impairs caregivers' immune function, placing them at high risk of both physical and emotional health problems.

But if you take good care of yourself, you can remain effective, avoid becoming mired in resentments, and stay healthy. Sifton provides dozens of suggestions to help caregivers care for themselves while caring for the person with Alzheimer's. For example, you can carve out time for regular contact with friends and a support group, watch comedies, get professional massages, and do anything that makes you happy. These are not indulgences. For caregivers who hope to keep their sanity, they are absolute necessities. You must take care of yourself, and Sifton does a fine job of explaining why and how.

Part of effective self-care is self-forgiveness. As a caregiver, you will make mistakes. Everyone does. You will have regrets. They are inevitable. Sifton advises: "Never let a good failure go to waste." Learn from your shortcomings, she counsels. And as you learn, try to appreciate one of the gifts of being a caregiver, the opportunities it offers for personal growth.

For people with Alzheimer's, short-term memory goes first, along with a sense of the future, then the past slowly fades away. In the early stage of the disease, these losses are often terrifying for the afflicted individual. But as the disease progresses, they become less of an issue. However, lost memory and skills -- and the inappropriate behavior that accompanies them -- remain huge issues for caregivers. One of the most challenging tasks of caregiving is to stop obsessing about the person's lost memories and begin to live with the person in the present moment. Sifton has a wonderful chapter on how to move in this direction. Her most important advice is to refrain from infantilizing the care recipient, to continue to treat the person as an adult, albeit one who cannot manage normally an ever-increasing number of actions that were once simple, everyday tasks. She encourages caregivers to look for -- and acknowledge -- moments of competence at whatever level of competence the person retains. This is tough, but kind -- and ultimately rewarding.

Kindness is one of Sifton's watchwords. Another is connection. She writes: "Those with dementia continue to have a deep sense of themselves and of their connection with loved ones. Dementia damages brain cells, not a person's humanity or the person's need to experience relationships with others and to be valued as a whole person in the present moment. Losing one's memory doesn't mean losing oneself or the people one cares about."

Other chapters explore the crucial subjects of creating a supportive environment, maintaining familiar routines, and organizing activities of daily living so they are most manageable for the care recipient. As part of creating a supportive environment, Sifton suggests painting the bathroom door a bright color to make it stand out, or decorating it in a way that can help the person with Alzheimer's disease find it. If wandering is a problem, she suggests camouflaging front and back doors so they are less obvious. Hanging curtains over exterior doors often works well.

One of the best chapters deals with communicating with those who have Alzheimer's. Some guides advise, terse, even one-word commands: "coat" for "put on your coat, "lunch" for "we're having lunch." Sifton makes a persuasive case for using sentences to treat afflicted individuals as adults and inviting them to participate in activities.

This essential resource for caregivers -- and their families -- is not a book to read once and then shelve. Navigating the Alzheimer's Journey is something to keep within arm's reach and review frequently as your caregiving situation evolves and new issues emerge. Like most caregivers, you're going to feel as if you're in a small boat far from a safe harbor, being tossed on stormy seas. But with Navigating the Alzheimer's Journey, at least you'll never be without a compass.

-- Michael Castleman is the author of There's Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer's Disease.

First published September 13, 2004
Last updated March 13, 2008
Copyright © 2004 Consumer Health Interactive

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