What If It's Not Alzheimer's? : A Caregiver's Guide to Dementia

by RADIN, LISA

• ISBN13: 9781591020875
• ISBN10: 1591020875
• Format: Trade Paper
• Copyright: 2003-10-01
• Publisher: Prometheus Books

Summary

Although the public most often associates dementia with Alzheimer's disease, the medical profession now distinguishes various types of 'other' dementias. This book is the first comprehensive guide dealing with frontotemporal dementia (FTD), one of the largest groups of non-Alzheimer's dementias. Designed as both a resource and a reference guide, this useful and up-to-date handbook contains twenty-five chapters full of practical information that caregivers of FTD patients need every day. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD sufferers. This much-needed resource work, the first of its kind, provides a wealth of information to both healthcare professionals and caregivers of someone suffering from frontotemporal dementia.

Table of Contents

Foreword	15	(2)
Murray Grossman, M.D., Ed.D.
Preface	17	(2)
Helen-Ann Comstock
Acknowledgments	19	(2)
Introduction	21	(4)
Lisa Radin and Gary Radin
Editors' Note	25	(4)
PART I: A Medical Focus
Chapter 1. The ABCs of Neurodegenerative Dementias	29	(12)
Martin Rossor, MA., MD., FR. C.P.
What Is Dementia?	29	(3)
Frontotemporal Dementia	32	(2)
Dementia with Lewy Bodies	34	(1)
Alzheimer's Disease	35	(1)
Vascular Dementia	36	(1)
Other Degenerative Diseases	37	(1)
Other Causes of Dementia	37	(1)
Investigations	38	(3)
Chapter 2. What Is Frontotemporal Dementia? A Clinical Perspective	41	(14)
Murray Grossman, MD., Ed.D.
Introduction	41	(1)
Clinical Presentation	42	(8)
Medical Investigations	50	(1)
Treatment and Management	51	(1)
Summary	52	(3)
Chapter 3. The Role of Genetics: A Piece in the FTD Puzzle	55	(12)
Jennifer M Farmer, MS., C.G.C.
Obtaining a Family Medical History	56	(2)
Introduction to Genetics and Inheritance	58	(3)
Genetics of FTD	61	(1)
Genetic Counseling and Genetic Testing	62	(3)
Conclusion	65	(2)
Chapter 4. Finding the "A" Team: Creating a Collaboration of Health Professionals	67	(6)
Carol F. Lippa, MD.
Seeking Out a Qualified Specialist	67	(2)
Preparing to Visit the Doctor	69	(1)
The Doctor's Examination	70	(1)
Follow-up after Visiting the Doctor	71	(1)
Summary	72	(1)
Chapter 5. Therapeutic Interventions: Drug Treatments and Other Therapies	73	(18)
Tiffany W. Chow, MD.
Goals of Therapy	73	(2)
The Nature of Cognitive Changes in Frontotemporal Dementia	75	(1)
Pharmacological Treatment for	76	(2)
Cognitive Changes
Management of Behavioral Changes	78	(3)
Motor Changes	81	(1)
Nonpharmacologic Interventions	81	(3)
Further Comments	84	(2)
Summary	86	(5)
Chapter 6. Rehabilitation Interventions: Uses and Benefits of Speech, Occupational, and Physical Therapies	91	(26)
Keith M. Robinson, MD.
The Idea behind Rehabilitation	91	(2)
The Essential Tools of Rehabilitation	93	(2)
Specific Treatment Approaches	95	(7)
Creating a Safe Environment	102	(1)
Mobility (Gait and Balance) Training and	102	(4)
Durable Medical Equipment (DME) Activities of Daily Living (ADL) Training	106	(1)
Aspiration Prevention during Eating and Swallowing	107	(1)
The Decision to Stop Driving	108	(9)
Chapter 7. As the Symptoms Progress: Understanding the Stages of the Disease	117	(6)
Carol F. Lippa, MD.
Rate of Disease Progression	117	(2)
What to Expect Over Time	119	(1)
Influencing Disease Progression	120	(3)
Chapter 8. An Immortal Legacy: The Human Impact of Biomedical Research and Autopsy	123	(16)
Jennifer M Farmer, MS., C.G.C., Virginia M.-Y. Lee, Ph.D., and John Q. Trojanowski, M.D., Ph.D.
The Importance of an Autopsy	123	(1)
A Brief History of Autopsy	124	(2)
The Autopsy Process	126	(4)
Research on Human Tissues and	130	(1)
Bodily Fluids
Impact of Biomedical and Autopsy Research on FTD	130	(4)
Conclusion	134	(5)
Chapter 9. Searching for the Answers: The Future of Research and Clinical Care	139	(8)
Jordan Grafman, Ph.D.
PART II: Managing Daily Care
Chapter 10. Self Expression and Safe Eating: Understanding Speech, Swallowing, and Nutrition	147	(12)
Erica Wollman, M.Ed., C.C.C.-S.L.P.
Communication	147	(1)
Stages of Questions	148	(1)
Levels of Questioning	149	(1)
Understanding Swallowing	150	(3)
Administering Medications	153	(1)
Need a Speech Pathologist?	154	(1)
A Feeding Tube for Nutrition and Hydration	155	(1)
Summary	156	(3)
Chapter 11. A Step Ahead: Exercise and Mobility	159	(10)
Heather J. Cianci, PT, G.C.S
What Is Physical Therapy?	159	(1)
Receiving Physical Therapy	160	(1)
Dealing with Your Health Insurance Provider	160	(1)
Finding the Right Therapist	161	(1)
The Physical Therapy Program	162	(5)
Preventing Falls	167	(1)
Summary	167	(2)
Chapter 12. Challenging the Mind: Activities and Socialization	169	(12)
Lisa Ann Fagan, O.TR./L., C.A.L.A.
Introduction	169	(1)
Independence Issues	170	(1)
The Just-Right Challenge- Modifying Activities for Success	170	(1)
Specific Types of Activities	171	(4)
Exercise	175	(1)
Freedom and Safety	176	(1)
Driving	176	(1)
Summary	177	(4)
Chapter 13. Fostering Personal Care: Hygiene, Dressing, and Eating	181	(12)
Lisa Ann Fagan, O.T.R./L., C.A.L.A.
Factors Affecting Ability to Participate in Personal Care	182	(1)
Strategies to Assist Individuals with Personal Care Tasks	183	(1)
Hygiene (Grooming, Toileting, and Bathing)	183	(4)
Dressing	187	(1)
Eating	188	(1)
Safety	189	(1)
Assisting with Transfers	190	(1)
Summary	191	(2)
Chapter 14. Within These Walls: Creating a Safe and Supportive Environment	193	(12)
Lisa Ann Fagan, O.T.R./L., C.A.L.A.
Creating a Calm and Reassuring Environment	194	(2)
Creating a Safe Environment	196	(2)
Falling Hazards	198	(1)
Creating Environments That Maximize	199	(1)
Functional Skills
Technology and Home Environments	200	(1)
Household Checklist	201	(4)
Chapter 15. Altered Relationships: Adapting to Emotions and Behavior	205	(14)
Katherine F. Rankin, Ph.D.
Introduction	205	(2)
Insight and Awareness	207	(3)
Loss of Empathy	210	(2)
Apathy	212	(2)
Rigid, Bizarre, and Socially	214	(5)
Inappropriate Behavior
Chapter 16. A Balance of Health: Maintaining General Medical Care Practices	219	(10)
Bruce L. Miller, M.D. and Rosalie Gearhatt, RN., MS., C.S.
Patients' Rights	220	(1)
Ethical Principles	221	(1)
Caregiver Roles in Health Decisions	222	(1)
Anticipating Health Care Decisions through the Course of the Disease	223	(5)
Summary	228	(1)
Chapter 17. Final Choices: Coping with End-of-Life Concerns	229	(16)
Jeannette Castellane, L.S.W
Institutional versus Home Care	229	(4)
Hospice Care	233	(2)
Ethics	235	(3)
Final Choices	238	(7)
PART III: Caregiver Resources
Chapter 18. Professional Caregiving: Using Health Community Services	245	(8)
Judy L. Fisher, R.N., MS., Ph.D. candidate and Susan Rileg, C.S.W.
Home Health Care	245	(4)
Adult Daycare Centers	249	(1)
Funding Sources for Services	250	(3)
Chapter 19. Home Away from Home: Nursing Home and Assisted-Living Options	253	(18)
Morris J. Kaplan, Esq., N.H.A.
When a Nursing Home Is Necessary; Finding a Good One	253	(1)
Key Determining Factors	254	(2)
Sources of Information	256	(4)
Visiting Homes in Person	260	(1)
Nursing Home Best Care Practices	261	(5)
Assisted Living	266	(5)
Chapter 20. By the Hands of Others: Creating Helpful Support Networks	271	(12)
Helen-Ann Comstock
Setting Up a Support Network	271	(5)
Resources	276	(7)
Chapter 21. Money Matters: Securing Financial and Legal Readiness	283	(22)
Paul L. Feldman, Esq. and Kent S. Jamison, Ph.D.
Introduction	283	(1)
General Resources	284	(1)
Surrogate Decision Making	285	(1)
Voluntary Arrangements	286	(3)
Involuntary Arrangements	289	(1)
Issues Affecting Income	290	(2)
Covering the Cost of Medical Care	292	(3)
Caregiver-Related Issues	295	(1)
Covering the Cost of Institutional Care	296	(4)
Other Options	300	(1)
Conclusion	301	(4)
PART IV: Caring for Yourself
Chapter 22. A Daily Break: Respite and Personal Care for the Caregiver	305	(6)
Vivian E. Greenberg, A.C.S. W., L.C.S. W. Understanding Caregiving	305	(6)
What Is Respite?	307	(2)
Knowing When You Need Respite	309	(2)
Chapter 23. From Loss to Life: Managing Emotions and Grief	311	(12)
Rev. David Cotton
Loss along the Way	311	(2)
Owning Your Grief	313	(4)
Four Steps to Emotional Health	317	(5)
Seeing the Whole	322	(1)
Contributing Authors	323	(6)
About the Editors	329	(2)
Resources	331	(6)
Suggested Reading	337	(4)
Index	341