What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia » (Revised)

Frontotemporal dementia (FTD) is one of the largest groups of non-Alzheimer's dementias. This guide for caregivers covers the medical aspects of FTD as well as practical issues relating to day-to-day care. Fifteen contributions from medical professionals and experienced caregivers address such topics as the stages of the disease; the benefits of speech, occupational, and physical therapies; and the ways in which FTD affects relationships with others. Several chapters are devoted to caregiver resources such as adult daycare centers and assisted living facilities. Annotation ©2004 Book News, Inc., Portland, OR

Foreword   John Q. Trojanowski, M.D., Ph.D.     15
Preface   Helen-Ann Comstock     17
Acknowledgments     19
Introduction   Lisa Radin   Gary Radin     21
Editors' Note     25
A Medical Focus
The ABCs of Neurodegenerative Dementias   Martin Rossor, M.A., M.D., F.R.C.P.     29
What Is Dementia?     29
Frontotemporal Dementia     32
Dementia with Lewy Bodies     34
Alzheimer's Disease     35
Vascular Dementia     36
Other Degenerative Diseases     37
Other Causes of Dementia     37
Investigations     38
What Is Frontotemporal Dementia? A Clinical Perspective   Murray Grossman, M.D., Ed.D.     41
Introduction     41
Clinical Presentation     42
Medical Investigations     50
Treatment and Management     52
Summary     53
The Role of Genetics: A Piece in the FTD Puzzle   Jennifer M. Farmer, S.S., C.G.C.   Elisabeth McCarty-Wood, M.S.     55
Obtaining a Family Medical History     56
Introduction to Genetics and Inheritance     58
Genetics ofFTD     61
Genetic Counseling and Genetic Testing     65
Discussing Genetic Issues with Your Family     67
Conclusion     69
Finding the "A" Team: Creating a Collaboration of Health Professionals   Carol F. Lippa, M.D.     71
Seeking Out a Qualified Specialist     71
Preparing to Visit the Doctor     73
The Doctor's Examination     74
Follow-Up after Visiting the Doctor     75
Summary     76
Therapeutic Interventions: Therapy and Nonmedical Options   Richard J. Caselli, M.D.   Roy Yaari, M.D., M.A.S.   Lauren MacLennan, M.S.N., C.R.N.P.     77
Goals of Therapy     77
Pharmacotherapy     77
Prevention     78
Intellectual Decline     78
Behavioral Problems     80
Sleep Disorders     82
Associated Problems     83
Abrupt Decline     84
Lifestyle Changes     85
Nonmedical Interventions     86
Rehabilitation Interventions: Uses and Benefits of Speech, Occupational, and Physical Therapies   Keith M. Robinson, M.D.     97
The Idea behind Rehabilitation     97
The Essential Tools of Rehabilitation      99
Specific Treatment Approaches     101
Creating a Safe Environment     108
Mobility (Gait and Balance) Training and Durable Medical Equipment (DME)     108
Activities of Daily Living (ADL) Training     112
Aspiration Prevention during Eating and Swallowing     113
The Decision to Stop Driving     114
As the Symptoms Progress: Understanding the Stages of the Disease   Carol F. Lippa, M.D.     123
Rate of Disease Progression     123
What to Expect Over Time     125
Influencing Disease Progression     126
An Immortal Legacy: How Donation of Human Tissues Impacts Research and Drives Advances in Diagnosis and Therapy   Jennifer M. Farmer, M.S., C.G.C.   Elisabeth McCarty-Wood, M.S.   Virginia M.-Y. Lee, Ph.D.   John Q. Trojanowski, M.D., Ph.D.     129
The Importance of an Autopsy     129
A Brief History of Autopsy     131
The Autopsy Process     132
Research on Human Tissues and Bodily Fluids     136
Impact of Biomedical and Autopsy Research on FTD     137
Conclusion     140
Searching for the Answers: The Future of Research and Clinical Care   Jordan Grafman, Ph.D.     145
Managing Daily Care
Self-Expression and Safe Eating: Understanding Speech, Swallowing, and Nutrition   Erica Wollman, M.Ed., C.C.C.-S.L.P.     153
Communication     153
Stages of Questions     154
Levels of Questioning     155
Understanding Swallowing     156
Administering Medications     159
Need a Speech Pathologist?     160
A Feeding Tube for Nutrition and Hydration     161
Summary     162
A Step Ahead: Exercise and Mobility   Heather J. Cianci, P.T., M.S., G.C.S     165
What Is Physical Therapy?     165
Receiving Physical Therapy     166
Dealing with Your Health Insurance Provider     166
Finding the Right Therapist     167
The Physical Therapy Program     168
Preventing Falls     173
Summary     173
Challenging the Mind: Activities and Socialization   Lisa Ann Fagan, M.S., O.T.R./L.     175
Introduction     175
Independence Issues     176
The Just-Right Challenge- Modifying Activities for Success     176
Specific Types of Activities     177
Exercise     181
Freedom and Safety     182
Driving      182
Summary     183
Fostering Personal Care: Hygiene, Dressing, and Eating   Lisa Ann Fagan, M.S., O.T.R./L.     187
Factors Affecting Ability to Participate in Personal Care     188
Strategies to Assist Individuals with Personal Care Tasks     189
Hygiene (Grooming, Toileting, and Bathing)     189
Dressing     193
Eating     194
Safety     195
Assisting with Transfers     196
Summary     197
Within These Walls: Creating a Safe and Supportive Environment   Lisa Ann Fagan, M.S., O.T.R./L.     199
Creating a Calm and Reassuring Environment     200
Creating a Safe Environment     202
Falling Hazards     204
Creating Environments That Maximize Functional Skills     205
Technology and Home Environments     206
Household Checklist     207
Altered Relationships: Adapting to Emotions and Behavior   Katherine P. Rankin, Ph.D.     211
Introduction     211
Insight and Awareness     213
Loss of Empathy     215
Apathy     218
Rigid, Bizarre, and Socially Inappropriate Behavior     220
A Balance of Health: Maintaining General Medical Care Practices   Bruce L. Miller, M.D.   Rosalie Gearhart, R.N., M.S., C.S.     225
Patients' Rights     226
Ethical Principles     227
Caregiver Roles in Health Decisions     228
Anticipating Health Care Decisions through the Course of the Disease     229
Summary     234
Final Choices: Coping with End-of-Life Concerns   Jeannette Castellane, L.S.W.     235
Institutional versus Home Care     235
Hospice Care     239
Ethics     241
Final Choices     244
Caregiver Resources
Professional Caregiving: Using Health Community Services   Judith L. Fisher, R.N., M.S., Ph.D. candidate   Susan Riley, M.S.W., L.S.W.     251
Home Health Care     251
Adult Daycare Centers     255
Funding Sources for Services     256
Home Away from Home: Nursing Home and Assisted-Living Options   Morris J. Kaplan, Esq., N.H.A.     259
When a Nursing Home Is Necessary; Finding a Good One     259
Key Determining Factors     260
Sources of Information     262
Visiting Homes in Person     266
Nursing Home Best Care Practices      267
Assisted Living     272
By the Hands of Others: Creating Helpful Support Networks   Helen-Ann Comstock     277
Setting Up a Support Network     277
Resources     282
Money Matters: Securing Financial and Legal Readiness   Paul L. Feldman, Esq.   Kent S. Jamison, Ph.D.     289
Introduction     289
General Resources     290
Surrogate Decision Making     291
Voluntary Arrangements     292
Involuntary Arrangements     295
Issues Affecting Income     296
Covering the Cost of Medical Care     299
Caregiver-Related Issues     302
Covering the Cost of Institutional Care     304
Other Options     308
Conclusion     309
Caring for Yourself
A Daily Break: Respite and Personal Care for the Caregiver   Vivian E. Greenberg, A.C.S.W., L.C.S.W.     313
Understanding Caregiving     313
What Is Respite?     315
Knowing When You Need Respite     317
From Loss to Life: Managing Emotions and Grief   Rev. David Cotton     319
Loss along the Way     319
Owning Your Grief     321
Four Steps to Emotional Health     325
Seeing the Whole     330
Contributing Authors     331
About the Editors     339
Resources     341
Suggested Reading     349
Index     353