Family Care Guide - Alzheimer's Disease & Dementia Help

Family Care Guide

A GUIDE FOR FAMILIES CARING FOR SOMEONE WITH ALZHEIMER'S DISEASE OR A RELATED DEMENTIA

MANH alzheimersMANH t wit / alzheimer sMANH

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TABLE OF CONTENTS

Table of Contents

Preface: L E T T E R F R O M PA U L R A I A , P H D ................................... PA G E 1

Chapter 1: INTRODUCTION.......................................................... PAGE 5 What is Alzheimer's disease? Ten warning signs Diagnosis of Alzheimer's disease Risk factors Progression of Alzheimer's disease

Chapter 2: COMMUNICATION........................................... PAGE 17 Communication is more than words Asking questions and giving directions Word retrieval Handling complaints or insults

Chapter 3: DAILY LIVING................................................. PAGE 23 Bathing Grooming Dressing Using the bathroom Nutrition Mealtime Sleeping Exercise Shopping Activities

Chapter 4: UNDERSTANDING BEHAVIORS......................... PAGE 35 Memory loss Late afternoon confusion Losing and hiding things Shadowing or clinging Pacing Anger Catastrophic reactions Hallucinations and delusions Sexuality Depression Physical aggression

ALZHEIMER'S ASSOCIATION

Chapter 5: SAFETY ISSUES........................................................ PAGE 45 Wandering Driving Financial safety Smoking and drinking Absence of a caregiver Medications Household safety

Chapter 6: P L A N N I N G A H E A D.................................................... PA G E 5 7 Partnering with the doctor Legal and financial planning Community resources Successful introduction of services

Chapter 7: TAKING CARE OF YOURSELF.................................. PAGE 67 Caring for the caregiver Caregiver support groups Children and teens Talking to family and friends

REFERENCES................................................................................ PAGE 73

APPENDICES................................................................................ PAGE 75

PAGE 1

Dear Caregiver:

This is the seventh edition of the Family Care Guide. The first edition was published in 1987 as part of an Administration on Aging Grant project. The intention then, as it is now, was to provide family caregivers with concise information on how to live and cope with Alzheimer's disease and other related illnesses. We want the Guide to be a quick reference book that provides stage-related information as you need it, when you need it.

Many of the strategies and techniques of care were originally contributed by active and former family caregivers. In a sense, the Guide was, and still is, a book of collective knowledge hard-gained by hundreds of caregivers providing thousands of hours of care. The information is also drawn from the latest literature on the various topics. This is a guide that is meant to be read in sections and probably not read from cover to cover in one sitting. We took this approach because we realize how demanding active caregiving can be.

There are more than 5 million persons with Alzheimer's disease in the United States today, and approximately 15 million family caregivers provide 17 billion hours of unpaid care in the community. On average, the person remains at home receiving care for five years. Time is a precious commodity for most caregivers.

In order to meet the demands of active caregiving for as long as possible, it is important that the caregiver(s) have regular predictable time off, time to replenish the soul, time for yourself or, time to socialize. Ask for help, if you need it. Consider using adult day health programs and volunteer or paid help in the home. Take care of yourselves as well as those in your care.

Since the first edition of this Guide, we have learned that many of the behavioral symptoms associated with Alzheimer's disease, and many of the related disorders, are treatable, if not outright avoidable. This Guide provides the reader with innovative practical approaches to care that can limit or prevent difficult symptoms. By no means are we implying that these techniques will arrest the progression of Alzheimer's disease, clearly they will not, but using them skillfully will limit many symptoms that were once thought to be an inevitable part of the disease process.

Because the ability to perceive emotion; to feel a range of emotions; to hold emotion; to respond to emotion; and to learn through emotional processing of information all remain intact late into Alzheimer's disease, maintaining positive emotion is a central concept in this Guide. The caregiver's goal is always to bring about a positive emotion in the person with Alzheimer's disease. Working from this perspective will allow you, the caregiver, to focus on the person that is still there, and not on what has been lost to the disease. Hopefully, this perspective will empower you with new skills that will reduce your stress and strengthen your relationship with the person with dementia.

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