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Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease

"A fine addition to Alzheimer's and caregiving collections." — Library Journal starred review

"A true godsend for anyone caring for those afflicted with dementia." — Rudolph E. Tanzi, Ph.D., coauthor of Decoding Darkness: The Search for the Genetic Causes of Alzheimer's Disease

Should you talk about an Alzheimer's diagnosis with the patient?
What is the patient experiencing, and how can you connect with him or her?
How can we make the best of the patient's remaining time?
Is continued communication possible?
Who cares for the caregiver?


About the Book

Alzheimer's is continually in the headlines, as such prominent public figures as Ronald Reagan and Charlton Heston grapple publicly with the disease, which afflicts four million Americans, and as the search for a cure continues. In Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease, Joanne Koenig Coste introduces habilitation. This approach, based on her own experiences caring for a loved one with Alzheimer's, revolutionizes the way we perceive and care for those suffering from the disease, particularly in its early stages. Houghton Mifflin will publish the book in November, to coincide with National Alzheimer's Awareness Month.

It has long been thought that after a certain point in the progression of the disease patients are "lost" to the rest of the world. Koenig Coste's new and important message is that it IS possible to continue communicating with Alzheimer's patients and significantly prolong the quality of life for both patient and caregiver.

In addition to the millions of Americans suffering from Alzheimer's, an estimated twenty million more — family members, loved ones, and caregivers — are significantly affected by the disease. Learning to Speak Alzheimer's is the first book to offer a practical route to emotional well-being for both patients and those who care for them. Habilitation focuses on simplifying the environment, concentrating on the patient's remaining skills, and creating opportunities for success and frequent praise. Unique in that it encourages early-stage patients to play a genuine role in their own care, habilitation depends on care partners' learning to speak the nonverbal language of the Alzheimer's patient. By meeting the patients in their own reality, rather than trying to force them to comply with a world they may no longer inhabit, we are able to respond in a way that brings satisfaction and even joy to both patients and caregivers.

Koenig Coste's approach is deeply rooted in personal experience. Three decades ago, her young husband was diagnosed with Alzheimer's shortly after the birth of their fourth child. Faced with caring for both her children and a husband whose mental faculties were rapidly disappearing, she began practicing a method that has evolved into her five tenets of habilitation. Since her husband's death she has devoted her life to this pioneering approach in care centers around the country, working with thousands of patients and care partners to prove that habilitation helps both parties thrive.

In addition to outlining the habilitation philosophy in a friendly, accessible style, Learning to Speak Alzheimer's offers hundreds of practical tips for creating and maintaining a friendly and safe environment for Alzheimer's patients, such as

• Offering foods to eat with fingers instead of utensils (and recipes for easy-to-eat finger foods)
• Eliminating bathroom mirrors when a patient wants privacy but believes the mirror image is that of a stranger
• Placing a lava light in the bathroom to focus attention during bathing
• Purchasing clocks with black numbers on a large, light face, to aid failing perception
• Using images to supplant words — for instance, a picture of dishes attached to the door of the cabinet where they are stored
• Placing black mats in front of doors leading outside, to discourage patients from wandering away and getting lost

Learning to Speak Alzheimer's has already generated phenomenal media attention and confirmed bookings on national morning television and coverage in national print publications. In November, to coincide with the book's publication and National Alzheimer's Awareness Month, Koenig Coste will embark on a nationwide author tour, cosponsored in part by local chapters of the Alzheimer's Association. To set up an interview with Koenig Coste before or during her tour, please contact Gracie Doyle, Houghton Mifflin Publicity, at (617) 351-3243.


About the Author

Joanne Koenig Coste is a nationally recognized expert on caring for patients with Alzheimer's disease and has been an outspoken advocate for patient and family care since 1973. Currently in private practice as an Alzheimer's family therapist, Koenig Coste also serves as president of Alzheimer Consulting Associates and as a consultant with the Massachusetts Alzheimer's Association. She lectures around the country and has appeared at Harvard University, the World Alzheimer's Congress, the National Alzheimer's Association, and the American Geriatric Psychiatry Association.

Koenig Coste is a board member of the American Journal of Alzheimer's Disease and has been named a "Woman to Watch in the Twenty-first Century" by NBC Nightly News. She is also the recipient of a National Health Heroes Award from Reader's Digest. Articles on her work have appeared in the Wall Street Journal, in Newsweek, and elsewhere.


The Five Tenets of Habilitation

These ideas are the basis for the humane approach to caring that I call habilitation. A habilitated person with dementia can live up to his or her potential, the upper limits of function, intellect, emotion, and spirit. Following the tenets of habilitation, both patients and care partners can feel successful at what they do, rather than feeling constantly weighed down.

1. SIMPLIFY THE ENVIRONMENT. Accommodate perceptual loss by eliminating distractions.

2. KNOW THAT COMMUNICATION REMAINS POSSIBLE. Remember that the emotion behind failing words is far more important than the words themselves and needs to be validated. Although many losses occur with this disease, assume that the patient can still register feelings that matter.

3. FOCUS ONLY ON REMAINING SKILLS. Value what abilities remain. Help the patient compensate for any lost abilities without bringing them to his or her attention.

4. LIVE IN THE PATIENT'S WORLD. Never question, chastise, or try to reason with the patient. Join her in her current "place" or time, wherever that may be, and find joy with her there.

5. ENRICH THE PATIENT'S LIFE. Create moments for success; eliminate possible moments of failure, and praise frequently and with sincerity. Attempt to find humor wherever possible.

These tenets require continual examination of how the patient thinks, feels, communicates, compensates, and responds to change, emotion, and love. Improving understanding in these areas can lead to the biggest successes in treatment.



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