A Caregiver's Guide to Dementia: An Unintended Journey
376
A Caregiver's Guide to Dementia: An Unintended Journey
376eBook
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Overview
*New Edition with Updated dementia, dementia care, and resource information.*
According to the Alzheimer’s Association, there are more than six million people living in the United States have Alzheimer's disease or some other form of dementia. Not reported in these statistics are the sixteen million family caregivers who, in total, contribute nineteen billion hours of unpaid care each year. This book addresses the needs and challenges faced by adult children and other family members who are scrambling to make sense of what is happening to themselves and the loved ones in their care. The author, an experienced medical and science writer known for her ability to clearly explain complex and emotionally sensitive topics, is also a former family caregiver herself. Using both personal narrative and well-researched, expert-verified content, she guides readers through the often-confusing and challenging world of dementia care. She carefully escorts caregivers through the basics of dementia as a brain disorder, its accompanying behaviors, the procedures used to diagnose and stage the disease, and the legal aspects of providing care for an adult who is no longer competent. She also covers topics not usually included in other books on dementia: family dynamics, caregiver burnout, elder abuse, incontinence, finances and paying for care, the challenges same-sex families face, and coping with the eventuality of death and estate management. Each chapter begins with a real-life vignette taken from the author's personal experience and concludes with "Frequently Asked Questions" and "Worksheets" sections. The FAQs tackle specific issues and situations that often make caregiving such a challenge. The worksheets are a tool to help readers organize, evaluate, and self-reflect. A glossary of terms, an appendix, and references for further reading give readers a command of the vocabulary clinicians use and access to valuable resources.
Product Details
| ISBN-13: | 9781633886957 |
|---|---|
| Publisher: | Prometheus Books |
| Publication date: | 10/12/2021 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 376 |
| File size: | 1 MB |
About the Author
Janet Yagoda Shagam (Albuquerque, NM) is a freelance medical and science writer; a visiting professor at the Max Planck Institute in Göttingen, Germany; an artist and printmaker; and the coauthor (with Rebecca G. Rogers, MD, and Shelley Kleinschmidt) of Regaining Bladder Control: What Every Woman Needs to Know. She serves on the New Mexico Area Agency on Aging statewide Alzheimer's Task Force.
Table of Contents
Foreword Mary Ann Conley, PhD xiii
Foreword Kevin Jameson xv
Introduction xix
1 My Unintended Journey 1
2 Together
Diane: Sometimes Things Come in Pairs 5
Steve: A Good Marriage 7
Carol: Make It Right before It Is Wrong 7
Marc: Caring 8
Ruth: My Father and His Son-in-Law 9
Pricilla: My Love 10
Linda: Betwixt and Between 11
Judy: Wife and Caregiver 11
Carolyn: Miss Gold Dust Eyes 12
Lynn: The Right Words 13
3 What's Going On? 15
Dementia Is a Syndrome 16
Why Does It Matter? 17
Clinical Studies 17
Memory and Aging 18
Mild Cognitive Impairment 19
Alzheimer's Disease 20
Mild or Early-Stage Alzheimer's Disease 22
Moderate or Mid-stage Alzheimer's Disease 22
Severe or Late-Stage Alzheimer's Disease 22
Vascular Dementia 23
Mixed Dementia 24
Frontotemporal Dementia 24
Dementia with Lewy Bodies 26
Traumatic Brain Injury 26
Parkinson's Dementia 27
Horse or Zebra? 27
Wernicke-Korsakoff Syndrome 27
Multiple Sclerosis Dementia 28
AIDS Dementia Complex 28
Creutzfeldt-Jakob Disease Dementia 29
Huntington's Disease Dementia 30
It's Confusing for Everyone-Confabulations, Delusions, and Hallucinations 30
Frequently Asked Questions 32
Worksheet 3.1: Age-Related Changes 34
4 What Could This Be? Diagnosing Dementia 35
Diagnosing Dementia-Why It's Important 36
Memory Loss Doesn't Always Mean Dementia 37
Assessing Cognitive Function 38
The Mini Mental Status Exam 38
The Clock-Drawing Test 39
The Blessed-Roth Dementia Scale 39
Susceptibility to Scams 40
Daily Living Skills and Home Safety 40
Medical Imaging: Looking inside the Brain 41
What Is a CT Scan? 41
What Is an MR Scan? 41
Contrast Media 43
A Few Words from the Medical Imaging Facility 43
Genetics and Dementia 44
Just over the Horizon: A New Way to Diagnose Dementia 45
Frequently Asked Questions 46
Worksheet 4.1: The Blessed-Roth Assessment 48
Worksheet 4.2: Assessing Help Needs 49
5 Family Dynamics 51
A Point of View 53
Where Family Disharmony Begins 53
The Dilemma of the Power of Attorney and Primary Caregiver 54
Taking a Closer Look at Ourselves 55
Words to Guide Actions 56
Don't Make Assumptions 57
Thank-You 57
Some Challenging Family Situations 57
Sons- and Daughters-in-Law 58
Blended Families 58
When Mom or Dad Has a Significant Other 59
Oh No, Not Again! 60
Afterward 60
Frequently Asked Questions 61
Worksheet 5.1: Self-Assessment 65
Worksheet 5.2: Reflective Writing 66
6 Managing Behavior: Theirs, Yours, and That of Others 67
Home Again 68
Who Is This Person? 68
Who Is in Charge? 69
Bugs on the Wall and Picnics on the Front Lawn 70
A Very Deep Sleep 72
When the Sun Goes Down 72
Wandering or Elopement 73
Safe Travels 75
It's Embarrassing for Everyone 76
Why Does Incontinence Happen? 77
Absorbency Products 77
Controlling Odor 78
Skin Care 78
Other Helpful Hints That Make Toileting Easier 79
Bathing 79
It's Hard to Imagine 80
Behavioral Management Strategies 81
What about Medication? 82
Medications Used to Manage Behavior 82
Alzheimer's Disease and Memory-Extending Medications 83
Integrative and Complementary Medicine 85
Medications Used to Quiet Difficult Behaviors 85
Some Important Things to Remember 86
Maybe You Could Use a Little Something, Too 88
Caregiver Syndrome: Giving a Name to How You Feel 89
If I Hear This Once More! 89
Elder Abuse 91
Financial Abuse 92
Frequently Asked Questions 93
Worksheet 6.1 Anger and Frustration 95
Worksheet 6.2 Reflective Writing 96
Worksheet 6.3 Honesty Part 1 97
Worksheet 6.4 Honesty Part 2 99
7 One Day at a Time 101
What's Different? 102
Who Are the Family Caregivers? 103
Legal Considerations 104
Steps to Power of Attorney 105
Competency 106
What to Do! 107
Guardianship and Conservatorship 109
I Can't Do Everything! 110
Helpful Hints to Gee through the Day 111
Communicating with Caregivers 111
Medical Care 112
Palliative Care 114
Home Medical Alert Systems 115
Emergencies 116
The Big "What If" 117
Respite 117
Distance Care 120
Ways to Pay for Care 121
Long-Term Care Insurance 123
Medicare, Medicaid, and Related Programs 123
Medicare 124
Medicaid 124
Medicaid and Related Programs 124
Program of All-Inclusive Care for the Elderly (PACE) 125
For Veterans and Their Caregivers 125
Frequently Asked Questions 126
Worksheet 7.1: Communication Form 128
Worksheet 7.2: Template Caregiver Directory (Electronic or Hard Copy) 129
8 When the Little Things Are Really the Big Things 133
Dementia and the Creative Spirit 134
Art 134
The Thursday Art Project 135
Music 135
The Poetry Project 136
Gardening and the Good Earth 136
Visiting with Family and Friends 137
Driving 138
Daily Money Matters 140
Not a Little Thing: Fraud and Scams 141
Grooming and Outward Appearances 142
Clothing 143
Dressing 144
Grooming 144
A Few Words from the Dental Office 145
Caregiver Hygiene 146
Frequently Asked Questions 147
9 Home Care and Caregivers 149
Challenges 150
Adult Children 150
Spouses 151
Caregiver Agencies 151
Who Are Agency Caregivers? 155
The Role of an Agency Caregiver 155
Independent Caregivers 157
The Job Interview 159
Business Owner and Family Caregiver 160
Not-for-Profit Eldercare Services 162
Last and Not Least 163
Frequently Asked Questions 164
10 It's Dinnertime! 165
Food Is a Sensory Experience 166
Food Wars 167
Nutrition 168
Eating Is More Than Food 169
I Remember When! 169
Be a Little Easy on Yourself 170
In-Person Shopping 171
Meals on Wheels 171
Stages of Dementia and Eating 171
Preparing Meals 172
Finger Foods 173
Pureed Foods 174
Frequently Asked Questions 175
Worksheet 10.1: Reflective Writing 176
Worksheet 10.2: A Family Project 177
11 Finding the Right Care Facility 179
Anticipate and Plan Ahead 180
How to Pay for Care 182
Types of Care Facilities 183
Learning about Assisted Living Facilities 185
Access to Medical Care 187
Choosing an Assisted Living Facility 187
Inspections and Inspection Reports 188
Communicable Illnesses in Residential Care Facilities 189
Preparing for Your Site Visit 190
First Steps 190
The Site Visit 192
Medications Revisited 195
Medicating for Other Conditions 196
Religious and Cultural Practices 197
Residential Care and the Lesbian, Gay, Bisexual, and Transgender (LGBT) Communities 197
Afterward 199
Frequently Asked Questions 200
Worksheet 11.1: Organizing Your Thoughts about Residential Care 203
Worksheet 11.2: Important Services 204
Worksheet 11.3: The Site Visit 206
12 It Isn't Home 207
Adjustment 208
Through Their Eyes 209
A New Place Called Home 210
More Than an Adjustment 210
What's Going On? 211
Elder Abuse 212
Other Changes 215
Visiting 215
Visiting with Dorothy 217
A Few Words of Encouragement 218
Frequently Asked Questions 218
Worksheet 12.1: Afterthoughts 221
Worksheet 12.2: Documenting Abuse 222
13 Failing Health 223
A Different Kind of Phone Call 224
End-of-Life Considerations 225
What Should I Do? 226
Turning Another Comer 226
Just One Signature 227
Dementia at Its Terminus 228
Eating Difficulties 229
Less Aggressive Care 230
End-of-Life and Palliative Care 231
Palliative Care and Difficult Decisions 232
Transition to Hospice 234
Hospice 235
Hospice Criteria 237
Hospice and Dementia 237
Cost of Hospice Care 239
Long-Lasting Words 239
Frequently Asked Questions 240
Worksheet 13.1: Difficult Questions 242
14 Passing 243
Dying of Dementia 244
Stages of Dying 245
Practicalities 248
A Good Death 249
Important Details 250
Unattended Deaths 250
Pronouncement and Time of Death 251
Autopsy: A Personal Decision 251
What Is an Autopsy? 252
Brain Donation and Clinical Trial Programs 252
Death Certificates 253
Death at Home 254
Death and Hospice 254
Hours Away 255
Something Unexpected 256
Good Grief 257
Not So Good Grief 257
Funerals 258
Preplanned Funerals 260
Burial Options 261
Cemetery Plots 262
Travel to a Final Resting Place 263
Be Aware of Your Feelings 264
Frequently Asked Questions 264
Worksheet 14.1: Quiet Time 267
Worksheet 14.2: Planning in Advance 268
Worksheet 14.3: Information for the Funeral Director 269
Worksheet 14.4: Information for the Obituary 271
15 Picking Up the Pieces and Peeling Back the Layers 273
Afterward 274
What's Next? 275
Getting Started 275
Estate Lawyers 276
Some First Steps 277
Keeping Records 277
The Estate 278
Transfer on Death (TOD) 279
Notifications 280
Social Security 280
Medicare 281
Life Insurance and Annuity Benefits 282
Veteran's Benefits 282
Unpaid Bills 283
Legal Notice of Death 284
Credit Cards 284
Communication Services 284
House Cleaning 285
So Much Stuff! 286
It Takes Sensitivity, Too 287
Estate Sales 287
Closing the Estate 289
Death and Taxes 289
Very Last Steps 290
Frequently Asked Questions 290
Worksheet 15.1: Dorothy's Blueberry Muffins 292
Worksheet 15.2: The Family and the Relatives 293
Acknowledgments 295
Glossary 297
Helpful Resources 315
Bibliography 335
Index 345