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

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  • Edition: 1st
  • Format: Hardcover
  • Copyright: 2003-11-01

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Joanne Koenig Coste, now a renowned pioneer in implementing positive methods of caring for Alzheimer's patients, began to develop her groundbreaking approach when her middle-aged husband was diagnosed with progressive dementia shortly after the birth of her fourth child. As she struggled to care for him and their family, she recognized that it was possible to avoid some of the tremendous emotional burdens Alzheimer's patients and their care providers endure during the course of the disease. In this book Koenig Coste explains the five tenets of her "habilitation" approach, an accessible and comprehensive plan proven to have worked with thousands of patients and care providers. Refuting long-accepted ideas, she calls for care "partners" to join patients in their current sense of place or time; to encourage patients to use their remaining skills to support their sense of independence and dignity; and, most of all, to continue communicating with patients by focusing on their emotional "language." Learning to Speak Alzheimer's also offers hundreds of practical tips to ease life for everyone involved with Alzheimer's, including how to - cope with the diagnosis and figure out if the patient wants to discuss it - respectfully stop the person from driving - make meal and bath times as pleasant as possible - adjust room design and lighting for the patient's comfort - deal with wandering, paranoia, and aggression - establish a plan of care Learning to Speak Alzheimer's revolutionizes the way we perceive and deal with Alzheimer's disease.

Author Biography

Joanne Koenig Coste, a nationally recognized expert and an outspoken advocate for patient and family care, is a board member of the American Journal of Alzheimer’s Disease. Currently in private practice as an Alzheimer’s family therapist, Koenig Coste also serves as president of Alzheimer’s Consulting Associates. She lectures around the country and is the recipient of a National Award for Health Heroes from Reader’s Digest. She was named a “Woman to Watch in the 21st Century” by NBC Nightly News

Table of Contents

Foreword by Robert N. Butler, M.D. xi
PART ONE Learning about Alzheimer's
1. The Ticking Meter
2. Seeking a Correct Diagnosis
3. What to Expect: Making the First Decisions
4. Habilitation, the New Approach
5. Seeing the World from the Patient's Perspective
PART TWO The Five Tenets of Habilitation
6. Tenet #1: Make the Physical Environment Work
7. Tenet #2: Know That Communication Remains Possible
8. Tenet #3: Focus on Remaining Skills
9. Tenet #4: Live in the Patient's World: Behavioral Changes
10. Tenet #5: Enrich the Patient's Life
PART THREE Beyond Habilitation
11. Caring for the Care Partner
12. Receiving Home Care
13. Receiving Care Outside of a Family Home
14. Inspiration
Glossary 203(3)
Appendix: Good Food for People with Alzheimer's 206(6)
Further Resources 212(17)
Index 229


1The Ticking Meter My head feels like an old depot, worn by time and tears. No more locomotives passing through, caf filled with tales and baggage. The old depots barren now. There has been a great brain robbery.One cool spring day in 1971, the kind that makes New Englanders smile at each other, I was driving with my husband down the main street of a small coastal town south of Boston. I spotted a parking space in front of our destination, a caf where we dined frequently, sharing chowder, fried clams, gigantic iced teas, and dreams of the future. I told my husband, "Look, theres a parking space. Not only that - theres money in the meter." "Im glad," he murmured, seeking my eyes through his sunglasses. "But I think my meter is running out." His metaphor fell on deaf ears. With a new life growing inside me - our fourth child - I may have been unwilling to accept his meaning. At the time my husbands lapses in memory seemed innocuous. He might forget a neighbors name or neglect to stop at the store or forget where the ignition was in the car, but I was clever at disregarding the hints of medical illness. After all, he frequently drove different cars as part of his advertising business, and he was so busy; keeping up with minor details was too much to expect. The situation will improve when we move into a new house, I told myself, or when the children are older, or when someone in the medical community will listen to what I am saying. We moved, the children grew, and the improvement never happened. We were near financial ruin. Customers werent calling us back; new jobs werent coming our way. He had ever greater difficulty focusing and organizing his thoughts, sometimes rewriting ad copy he had finished the day before. Once so gentle, docile, and fun to be around, he became frustrated and angry. My mantra continued whenever I was awake: "Things will be so much better when -" When? Our journey into the world of dementia began in 1971, when no guideposts, advocates, manuals, or support groups were available to help us. The National Alzheimers Association would not be organized for another decade. My husband was only in his forties, and I did not believe that his forgetfulness was a natural part of aging. The children chided their father occasionally about his "absent-mindedness" but seemed to see nothing deeper. The prescription for Valium to treat his supposed "depression" was refilled many times. And sometimes my husband unwittingly doubled the dose or forgot to take it at all. Always well dressed in the past, my handsome, athletic husband began to need help matching his suit, tie, and shirt. I started to lay out his clothes for the next day before we went to bed at night. I made sure to tell him what fun I had selecting the outfits, but I was embarrassed to be doing this task. I never mentioned it to others. Then in 1973, a major stroke paralyzed him on one side, and I replaced the Brooks Brothers s

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