Palliative Care for Advanced Alzheimer's and Dementia: Guidelines and Standards for Evidence-Based Care

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Overview

"Winner of an AJN Book of the Year Award for 2010!

This book...provides important information on best practices and appropriate ways to care for a person with Alzheimer's and advanced dementia. Drs. Martin and Sabbagh have assembled a team of experts to help craft recommendations that should ultimately become standards that all professional caregivers adopt.

-Michael Reagan
Son of former President Ronald Reagan
President, Reagan Legacy Foundation

This book testifies that caregivers can have a monumental impact on the lives of persons with advanced dementia. Through specialized programming and a renewed effort toward patient-centered care, caregivers can profoundly enrich the quality of life for these persons. Providing guidelines for health care professionals, caregivers, and family members, this book introduces palliative care programs and protocols for the treatment of people with advanced dementia.

The book is designed to guide professional caregivers in meeting the needs of patients and their families, providing insight into the philosophy, assessment, planning, implementation, and evaluation measures involved in interdisciplinary palliative care. The chapter authors offer guidelines and standards of care based on contributions from nurses, physical therapists, social workers, dietitions, psychologists, family caregivers and pastors. An exhibit at the end of every chapter clearly articulates the standards of care appropriate for all advanced dementia facilities and health care staff.

This book helps caregivers:

  • Enhance the physiological, psychological, social, and spiritual well-being of the patient and the patient's family
  • Anticipate and meet the patient's basic human needs: hunger, thirst, body positioning, hygiene, continence, and management of any pain
  • Ensure that the patient's surroundings are safe, comfortable, and homelike
  • Address health care decisions that will support the patient's right to self-determination until the end of life
"
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Editorial Reviews

Doody's Review Service
Reviewer: Darrell A Owens, DNP (University of Washington Medicine)
Description: This book for healthcare providers who are involved in the care of people with dementia and their families starts with a definition of various types of dementia before covering a wide array of topics such as protecting the dignity of patients, symptom management, managing activities of daily living, and advance care planning and resources.
Purpose: It is designed to guide professional caregivers in meeting the needs of those with advanced dementia and their families, and to provide insight into the philosophy, assessment, planning, implementation, and evaluation measures involved in palliative care. As the population ages, so too will the number of people who are diagnosed with dementia. This book and others like it are needed to assist healthcare providers with meeting the needs of this growing population. This one meets its objectives and will serve as a useful guide for professionals.
Audience: Healthcare practitioners actively involved in the care of people with dementia are the intended audience. While the information would be useful for students, the book is written at a level that is more appropriate for those in active practice or in graduate training.
Features: The book clearly defines the various types of dementia, including a succinct trajectory of illness based on type. The book does an exceptional job of defining personhood and how it is impacted when one receives a diagnosis of dementia. The general overview of drug therapy for people with dementia is brief. Prescribing healthcare providers would likely need a more detailed book if they specifically needed detailed pharmacotherapy information. The section dedicated to activities of daily living is detailed, but has less utility for practitioners in active practice and is better suited for students. The chapter on cultural diversity is also well written and is a nice reference for healthcare providers working with diverse populations. Finally, the chapter on advance care planning is thorough and helpful. This chapter would likely be most beneficial for providers who specialize in areas other than geriatrics, such as primary care providers.
Assessment: As the population ages, the number of those being diagnosed with dementia is increasing. The majority of work published on the care of people with dementia appears in larger books on geriatrics and mental health. This one is written specifically for caregivers of people with dementia at the end of life and their families. The focus on the end stages of illness makes the book unique and worth adding to your library.
From The Critics
Reviewer: Darrell A Owens, DNP, ARNP(University of Washington School of Nursing)
Description: This book for healthcare providers who are involved in the care of people with dementia and their families starts with a definition of various types of dementia before covering a wide array of topics such as protecting the dignity of patients, symptom management, managing activities of daily living, and advance care planning and resources.
Purpose: It is designed to guide professional caregivers in meeting the needs of those with advanced dementia and their families, and to provide insight into the philosophy, assessment, planning, implementation, and evaluation measures involved in palliative care. As the population ages, so too will the number of people who are diagnosed with dementia. This book and others like it are needed to assist healthcare providers with meeting the needs of this growing population. This one meets its objectives and will serve as a useful guide for professionals.
Audience: Healthcare practitioners actively involved in the care of people with dementia are the intended audience. While the information would be useful for students, the book is written at a level that is more appropriate for those in active practice or in graduate training.
Features: The book clearly defines the various types of dementia, including a succinct trajectory of illness based on type. The book does an exceptional job of defining personhood and how it is impacted when one receives a diagnosis of dementia. The general overview of drug therapy for people with dementia is brief. Prescribing healthcare providers would likely need a more detailed book if they specifically needed detailed pharmacotherapy information. The section dedicated to activities of daily living is detailed, but has less utility for practitioners in active practice and is better suited for students. The chapter on cultural diversity is also well written and is a nice reference for healthcare providers working with diverse populations. Finally, the chapter on advance care planning is thorough and helpful. This chapter would likely be most beneficial for providers who specialize in areas other than geriatrics, such as primary care providers.
Assessment: As the population ages, the number of those being diagnosed with dementia is increasing. The majority of work published on the care of people with dementia appears in larger books on geriatrics and mental health. This one is written specifically for caregivers of people with dementia at the end of life and their families. The focus on the end stages of illness makes the book unique and worth adding to your library.
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Product Details

  • ISBN-13: 9780826106759
  • Publisher: Springer Publishing Company, Incorporated
  • Publication date: 7/23/2010
  • Edition description: New Edition
  • Pages: 332
  • Product dimensions: 6.90 (w) x 9.90 (h) x 0.90 (d)

Meet the Author

Marwan N. Sabbagh MD is a geriatric neurologist and dementia specialist; he is one of the leading experts in Alzheimer's disease research nationally. Dr Sabbagh received his bachelor's degree in Physiology at the University of California-Berkeley in 1987. He went on to the University of Arizona, College of Medicine in Tucson, AZ where he received his MD in 1991. He completed a neurology residency at prestigious Texas Medical Center and Baylor College of Medicine in Houston, Texas in 1995. From there, he underwent additional training in dementia/geriatric neurology training at the University of California-San Diego. Then, he served on the faculty at UCSD as assistant professor in the department of neurosciences. In 2000, he was recruited to Banner-Sun Health Research Institute to be the founding director for the center for clinical research. Since, becoming the director of the Cleo Roberts Center for Clinical Research at Banner-Sun Health Research Institute, Dr Sabbagh has conducted over 80 clinical trials and clinical research studies in Alzheimer's disease and other brain degenerative and medical conditions including being the site Principal Investigator or national principal investigator for several prevention and treatment trials for Alzheimer's disease. He serves on the board of directors for the Desert Southwest chapter of the Alzheimer's Association. Dr Sabbagh has authored or co-authored over published 100 article, chapters and abstracts in Alzheimer's disease research including in respected medical journals such as Neurology, Archives of Neurology, Journal of Alzheimer's Disease, Alzheimer's disease and Associated Disorders, Proceedings of the National Academy of Sciences, Current Alzheimer's Research and most recently in the New England Journal of Medicine. He serves as senior associate editor for the Journal of Alzheimer's Disease and Clinical Neurology News and BMC Neurology. Dr Sabbagh has authored the critically acclaimed book The Alzheimer's Answer: Reduce Your Risk and Keep Your Brain Healthy. Dr Sabbagh has also been a prominent featured speaker on Alzheimer's at many regional and national conferences

Gary Martin, PhD, is a Licensed Clinical Psychologist and a Geriatrics and Long Term Care Specialist who is an owner of Integrated Geriatrics Behavioral Health Associates, PA, an incorporated behavioral health provider group in Scottsdale, AZ. Dr. Martin is the Clinical Director of several retirement and assisted living communities in the Greater Phoenix area. In addition, he is the Clinical Director of fourteen LTC-based specialized Behavior Units and eleven specialized Dementia programs in the Greater Phoenix area. His areas of specialization include: program development for dementia care programs and behavioral treatment programs for high acuity patients in LTC settings; staff training, palliative care, and clinical oversight for persons with dementia; consultation with nursing homes, assisted living facilities, families, and other caregivers on treating older adults; and the education and training of health care professionals, physicians, social service staff, and medical and gerontology students in the field of clinical gerontology. Dr. Martin is the recipient of numerous awards, including the Outstanding Community Service award from the Arizona Alzheimer's Consortium, Provider of the Year award from the Arizona Business Journal, and several Best Practices Awards from Arizona nursing home advocacy groups. Dr. Martin serves on the Board of Directors of the Alzheimer's Association, Desert Southwest Chapter, and is affiliated with the APA, GSA, Psychologist in LTC (founding member, 1984).

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Table of Contents

Foreword Michael Reagan Reagan, Michael

Preface

Acknowledgments

SECTION I INTRODUCTION TO PROFESSIONAL MANAGEMENT OF ADVANCED DEMENTIA

1 Determining and Defining Advanced Dementia 3

2 The Continuum of Care 11

3 Caregiving 25

SECTION II PROTECTING DIGNITY FOR THE PATIENT WITH DEMENTIA: ESTABLISHING AN ENVIRONMENT AND CAREGIVING STANDARDS

4 Personhood 43

5 Creating the Optimal Milieu for Care 55

6 Managing Behavior Problems Associated With Advanced Dementia 65

7 Assessing and Addressing Pain 83

8 Ensuring the Appropriate Use of Medications in Advanced Dementia 93

SECTION III MANAGING ACTIVITIES OF DAILY LIVING

9 Eating and Nutrition 107

10 Dressing and Grooming 117

11 Bowel and Bladder Management 123

12 Ambulation and Mobility 131

13 Bathing 147

SECTION IV PROVIDING FOR OTHER HEALTHCARE NEEDS

14 Activities Programming 155

15 Cultural Diversity 171

16 Healthcare Decisions for Persons With Advanced Dementia 239

17 The Continuum of Grief 259

18 Establishing Healthcare-Related Legal Options for the Vulnerable Patient 271

Glossary 281

Appendix A Professional and Caregiver Resources for Advanced Dementia 289

Appendix B Cultural Resources on the Web 293

Appendix C Federal Guidelines for Providing Culturally Sensitive Care 297

Appendix D Cultural Heritage Assessment Form 299

Index 303

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