When Love Meets Dementia

Frontotemporal Degeneration (FTD) is now recognized as one of the most common forms of dementia in individuals under age 65, second only to Alzheimer’s. Shedding light on a little known brain disease, this volume examines FTD from a few angles, beginning with the author’s insightful memoir of her husband’s struggle with FTD and its impact on their family. Detailed background information on the disease is provided along with discussion of related issues, and information on how to minimize the chances of becoming a victim.

Long time educator Ada Anbar is the author of several parenting books that discuss early childhood development issues and the difficulties that mothers encounter in balancing their needs with those of their young children. She lives in Phoenix, Arizona.

Elaine A. Moore has worked in hospital laboratories for more than 30 years, primarily in immunohematology and toxicology. She is a freelance medical writer and laboratory consultant. For more information, visit her website at www.elaine-moore.com. She lives in Sedalia, Colorado.

Ada Anbar

Series Editor Elaine A. Moore

Foreword by Marwan N. Sabbagh

Format: softcover (6 x 9)
Pages: 210
Bibliographic Info: 12 photos, notes, bibliography, index
Copyright Date: 2019
pISBN: 978-1-4766-7340-0
eISBN: 978-1-4766-3376-3
Imprint: McFarland
Series: McFarland Health Topics

Acknowledgments  xiii
Foreword by Marwan N. Sabbagh MD, FAAN  1
Preface  3
Introduction  5

Part I: The Personal Story—Sixty Years of Marriage, Then Kicked Out
1 • The Day That Changed My Life  10
A Cruise to the Baltic  11
2 • A Fractured Spine  14
The Long Flight Home  15
A Stay in the Hospital  16
3 • The CNAs Are Coming Home  19
Fountain Hills  21
A Bad Idea  25
The Suicide Threats  27
4 • Romantic Beginnings  31
A Personal Security Guard  34
The Lawyers Are Stepping In  36
5 • Kicked Out of My Grave  40
The Need for a Medical Evaluation  41
6 • The Apartment  43
The Missing Gold Coins  45
Life After the Crash  46
Sunday Visits to Fountain Hills  49

Part II: The Elusive Diagnosis
7 • An Emerging Pattern  54
The Chronology of a Disease  54
A New Homecare Agency  59
The Race for a New Psychiatric Evaluation  61
A Tragicomic Scene  62
8 • At Last a Diagnosis  64
Difficult Decision  65
The Silver Lining  67
9 • Crossing Over  69

Part III: Lingering Questions
10 • What Exactly Is FTD?  74
Is FTD Common?  76
Is FTD a New Disease?  77
How FTD Got Its Name  79
The Importance of Scientific Conferences  82
Diagnostic Criteria  84
11 • Sub-Types of FTD  85
Prognosis  86
Warning Signs  86
12 • The Clinical Symptoms of FTD  88
FTD vs. Alzheimer’s  89
What Causes FTD?  91
13 • Triggers for FTD Development  93
The Role of Genetics  93
The Pros and Cons of Genetic Testing  95
Other Possible Factors  97

Part IV: Treatment/Prevention/Management
14 • Basic ­Pre-Treatment Information  106
Before Treatment Begins  106
15 • Common Pharmacological Treatments  108
16 • Non-Pharmacological and Nutritional Support  110
Supplements  113
The Healthy Brain Diet  114
17 • The Healthy Lifestyle  116
Keeping Active  116
The Importance of Sleep  117
A Good Bedtime Routine  118
Manage Your Stress  119
Stop Smoking and Drinking  120
18 • Rehabilitation  122
The Rehabilitation Team  122
The Danger of Deconditioning  123
Pressure Sores  124
Assistive Devices  126
19 • The Supportive Environment  127
A Sense of Calm and Reassurance  128
Minimizing Fall Risks  129
General Environmental Safety Issues  130
FTD and Driving  131

Part V: When FTD Is Suspected
20 • What to Do When FTD Is Suspected  134
Confirm the Diagnosis  134
Convene a Family Meeting  135
Create a Care Team  137
Legal Issues  138
Money Matters  139
Conclusion  141
21 • The Altered Relationship  142
Loss of Insight and Self-Awareness  143
Loss of Empathy  144
Apathy and Social Withdrawal  145
Socially Inappropriate Behavior  146
Gone but Not Gone  147
22 • The Care of the Caregiver  148
The Job of the Primary Caregiver  148
Helpful Recommendations for the Primary Caregiver  150
23 • Caregiver Resources  153
Community Services  153
The Silverado Story (Model I)  157
Dementia Village (Model II)  161
24 • Is Dementia a Normal Part of Aging or a Disease?  163
The Story of the ­Super-Centenarians  164
The Blue Zone Areas  165
The Effect of Our Changing Demographics  167
Conclusion  169
25 • The Future of FTD Research  171
Slow Progress but Much Hope  171
More Genetic Research  172
A Search for the Process  172
Are Rates of Dementia Falling?  174
The Bredesen Protocol  175
Autopsy Research  176
Famous People Who Suffered from Dementia  177
26 • Personal Reflections  179

Chapter Notes  181
Resources  187
Recommended Reading  189
Bibliography  191
Index  195

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