The Insider's Guide to Dementia Care
CONTENTS
(reformatted for this page)
Introduction: From the Trenches—The Reality
Of Assisted Living and Long-Term Care .............. i
Author Profiles ........................................................... vi
Acknowledgment ...................................................... viii
1 An Introduction to Alzheimer’s and the Brain.1
Common Misconceptions about Alzheimer’s
and Dementia ........................................................ 3
Diagnosis of Dementia ..................................................... 5
About Brain Function ...................................................... 7
Vision .................................................................... 8
Language ............................................................... 8
Memory ................................................................. 9
Executive Function ............................................... 12
Summary ....................................................................... 15
2 The Dementia Care Crisis.................................... 16
The Current Landscape: Commonly Available
Care Options ......................................................... 19
Adult Day Care (Senior Day Programs) ................. 19
Non-medical Home Care ....................................... 20
Assisted Living ...................................................... 20
Nursing Homes ..................................................... 21
Mrs. Jackson: “Lady of Leisure” ................. 21
Specialty Dementia Care Facilities ......................... 25
Kelly’s Mother’s Disastrous yet
“Unavoidable” Fall ..................................... 25
Problems with Assisted Living ........................................ 28
Definition of Assisted Living .................................. 29
Lack of Regulatory Oversight ................................ 31
Cost ...................................................................... 32
Caregiver Deficiencies .................................................... 33
Number of Staff ................................................... 33
Knowledge of Staff ............................................... 34
Responsiveness of Staff ........................................ 34
Mrs. O’Neill’s Bad Night ............................. 35
Elder Abuse ................................................................... 37
The Big Picture .............................................................. 38
3 The Sorry State of Caregiver Training...............42
Bob and Mary .............................................................. 42
What Training? ............................................................. 46
Current Training Requirements ........................... 48
Continuing Education Requirements .................... 51
Unheeded Call to Action ................................................ 52
Existing Training Models and
Their Shortcomings ............................................. 54
Just Following Protocol: Negligence
“by the Book” for Mrs. Addison .......................... 56
Colonel Emerson: If You Yell, He’ll Hear You ................ 59
Mr. Alvin: His “Cup Runneth Over” .............................. 60
The Crying Need for Effective
Training Strategies .............................................. 63
4 The “Culture Change” Movement.................... 68
Mrs. Addison: Bah Humbug ......................................... 68
De-Institutionalization of Long-Term Care .................... 71
Person-Centered Care: The Next Hot Thing ................... 73
Mrs. Smith: Under Attack ................................... 74
Mrs. Hawkins: “Anorexia” ................................. 78
Misapplication of “Person-Centered” to
Dementia Care .................................................... 81
Does Person-Centered Care Equal Knowledge? ............. 82
Does Person-Centered Care Equal Quality Care? .......... 83
What You Can Do to Help Ensure
True Person-Centered Care .......................................... 83
5 The Hospice “Solution”...................................... 86
Hospice versus End-of-Life Care ................................... 86
Effie: At Death’s Door? ....................................... 89
Appropriate Hospice Care ............................................ 91
How Do Hospice Companies Work ? ............................. 94
Marketing Death .......................................................... 97
What Can You Do? ....................................................... 99
6 Why Is This So Difficult?.................................. 103
Marketing Tactics ........................................................ 104
The Personal Touch ..................................................... 109
After the Move ............................................................. 112
Mr. Johnson: Good Samaritan or Let No
Good Deed Go Unpunished? ............................... 117
7 What You Can Do............................................... 122
Education ................................................................... 122
Elder Law ................................................................... 124
Long-Term Care Insurance ......................................... 124
Communication .......................................................... 126
Best Practices for Family Councils ..................... 127
What to Do When Things Go Badly .............................. 129
Facility Management ......................................... 129
State Agencies .................................................... 131
Elected Officials ................................................. 131
To Sue or Not to Sue .......................................... 132
The Challenge ............................................................. 133
Appendices
A. Resources ............................................................... 136
B. Brainwork: Understanding Alzheimer’s
From The Ground Up ................................................. 146
C. Brainwork: Brain Function and Behavior ................ 171
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