Inside the Dementia Epidemic: A Daughter's Memoir
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affirmation, 152
Affordable Care Act, 311
aging in community, 246
aging in place, 246
agitation, 114, 141-142, 157, 163, 203-205
see also anger; violence
aides, see home care aides; nursing home aides
alarms, safety, 133, 140, 145, 159, 163, 174, 258
alcoholism, 7, 10, 23, 49, 56, 59, 65-69, 234
Alzheimer’s Association, 3, 17-19, 53, 260, 290, 296-297, 312, 320, 323, 325
Alzheimer’s disease, 1-2, 39-40, 42, 52, 54, 102, 106, 151, 231, 254, 280, 283, 285-286, 289-311, 317, 320-325
preclinical Alzheimer’s disease, 20, 52, 292
stages of, 17-20, 42-43, 47, 51, 54, 101, 106, 120, 141-142, 186, 194, 220, 235, 244, 260, 272, 284
statistics, 1-2
see also dementia; research; risk factors
Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, 283
Alzheimer’s Disease Facts and Figures, 312
Alzheimer’s Foundation of America, 320, 324
Alzheimer Society of Canada, 291
amae, 271
American Sleep Apnea Association, 300
Americans with Disabilities Act, 267
amyloid, see beta-amyloid
amyloid beta-derived diffusible ligand, 306
anger, 30-31, 43-44, 47, 50, 55, 59, 65-69, 72, 75, 114, 134
see also violence; agitation
antibiotics, 231, 253-254
antisocial behavior, 274-276
anxiety, 10, 44, 204
apathy, 274
APOE ε4 allele, 301
appetite, loss of, see diet and food
area agencies for aging, 39, 60, 211, 260, 322
Aricept, 293
aspiration of food, 19
assets, see Medicaid
assisted living, 40-41, 46, 60, 74, 76, 84-85, 95, 171, 284
costs of, 78, 211
description of, 77-78
enriched license, 174
Green House Project and, 248
limits of services provided by, 86, 99, 106, 121, 131, 166-167
Medicaid and, 211
Australia, 320, 325
autopsy, 276
Axona, 307
B
bacteria, 302
“bad neighborhood” hypothesis, 302
Basting, Anne Davis, 238
bathing, see showering
bed rails, see safety and a safe environment
behavioral changes, 19, 276
beta amyloid, 276, 289, 291, 306-307
biomarkers, 290-292
bipolar II disorder, 268-276
birthday celebrations, 149, 262, 278, 281
biting, 204
blood pressure, 106, 295, 300
blood sugar, see insulin resistance
blood test, for Alzheimer’s disease, 303
body work for elders, 255, 265, 267
boredom, 245
bowel incontinence, see incontinence
bowel obstruction, 116-117, 120-121, 123
brain:
importance of stimulation of, 10, 296
scans, 289-291
shrinkage, 296
Breakthrough Act, 324
Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, 256
Britain, 317
C
car, see driving
carbohydrates, see diet
cardiovascular disease, 105, 321
caregivers:
asking for help, 3, 11, 37
caring for self, 2-3, 36, 41, 57, 61, 165, 177, 186, 257, 266
counseling for, 41, 57, 284, 322
organizations, see support
resources, see support
respite, 57, 76, 318, 322
surrogate decision-making by caregiver, 116, 119, 216-217, 257
caregiving:
and depression, 2
and fatigue, stress, 2-3, 41, 60, 124, 147, 165, 178, 186, 194, 223
and job demands, 39, 57, 61-62, 133, 137, 165
long-distance, 151, 193
monetary value of, 2
statistics, 1-2
care partners, 151, 246
care plan meetings, 157-159, 196-201, 222, 228, 278-279
see also personal care plan
Caring for Our Parents, 316
case management, 85, 103, 121, 123
Castronovo, Vincenza, 299
CAT scan, see CT scan
cataracts, 111
Centers for Medicare & Medicaid Services, 311, 322
Changing Aging blogstream, 247
checkbook management, see cognitive function
children:
and grandparent with dementia, 61, 74, 225
visiting in nursing homes, 245
cholesterol, 106, 295, 297, 308
CLASS Act, see Community Living Assistance
Services and Supports Act
clinical trials, 289-291, 301-302, 312
see also research
cognitive function, 12, 53-54, 105, 294, 298, 306-307, 310
checkbook management, 12, 20, 37-38, 40, 53, 6, 107
mild cognitive impairment, 17, 20, 52, 54
planning and organizing, 24, 47, 54, 299
reading, 35, 89, 93, 112
see also brain, importance of stimulation of
cohousing, elder, 318
cold sores, 304
Columbia University, 301
combativeness, see agitation
see also violence
communication:
between caregiver and facility staff, 101, 114, 122-123, 140, 173, 181
between caregiver and person with dementia, 60, 151-153, 155, 163-164, 238-243, 253-254, 265, 273, 280-281
by person with dementia, see cognitive function
non-verbal, 152, 237-240, 263, 270, 276, 280-282
Community Living Assistance Services and Supports Act, 313-317
comprehension, see cognitive function
compulsive behavior, 19, 220
constipation, 115
contact lenses, see eye care
continuing care, 250
Continuous Positive Airway Pressure, see CPAP
cooperation, 158, 163
correcting, 89, 152-153
Coste, Joanne Koenig, 239
counseling, see caregivers, counseling for
CPAP, 298-299
craving sweet food, 275
CT scan, 45, 53
cueing, 234
culture change, in elder care, 244-249
cure, 2, 292, 320, 325
see also research, and dementia
Cures Accelerations Network, 325
D
dancing, 202
Dancing with Rose: Finding Life in the Land of Alzheimer’s, 186, 221
day care, see adult day care
Deans, Emily, 309
death, see end-of-life concerns
decision-making, see caregivers: surrogate decision-making by
dehydration, 278
dementia:
care, cost of, 2-3
diagnosing, 17, 43, 275, 283, 289-291
progression, slowing of, 2, 293
statistics, 1-2
symptoms of, 17-20, 51, 54, 144
types of, 2
ward, see nursing homes, dementia care units
see also Alzheimer’s disease; Frontotemporal dementia; multi-infarct dementia; research; risk factors
Dementia Beyond Drugs: Changing the Culture of Care, 264
dementia care units, see nursing homes, dementia care units
denial, 10, 15-16, 26, 36, 119, 222, 235-236
dental visits, 88, 242
Depakote, 52
Depends, see diapers, adult
depression, 10, 28, 33, 51, 60, 279, 283, 289, 300, 310, 312
and bipolar II disorder, 269
see also caregiving, and depression
despair, 279
diagnosis, see dementia
Diamond, Jack, 291-292, 301
diapers, adult, 121, 135, 155, 166-167, 182, 214-215, 219, 266
diet: food, and eating, 84, 159, 161-162, 197, 278
appetite loss and, 15, 33, 38, 144, 147, 180, 192, 235
assistance with cooking, 13, 18, 58, 75-76, 283
carbohydrates, 106, 307-309
difficulties with, 19, 38, 43, 57, 106, 159, 234-235, 271, 285
finger food, 260
in the Green House Project, 247
in restaurants, 191-192
ketonic, 307, 309
refusing, 31, 33, 38, 115, 144, 147, 180, 235, 259-260, 285
sugar, 21, 43, 51, 106-108, 130, 132, 144, 147, 192, 235, 243, 275, 280-281, 297, 305-309
supplements, 235
trans fat, 21, 295
weight loss and, 14-15, 199, 234, 259-260, 278, 280
see also feeding tubes
dieticians, see nutritionists
dignity, 155, 247
discharge planning, see nurses, discharge
divorces, 233-234
doctors:
adult children’s relationship with, 113-114
driving issue and, 15
in the Green House Project model, 249
primary care, 88, 119, 229, 262, 269, 279, 283, 289, 310-312, 322
dogs, see pets
dolls, 155, 222
Donepezil HCl, 293
“do not resuscitate” order (DNR), 116, 228
Down’s Syndrome, 322
dressing, 18-19, 43, 57, 107, 121, 131, 181-182, 220, 284
drinking, see dehydration
driving, 8, 15, 31-32, 40, 53, 75, 283
drug research, see medication
drugs, see medication
Duntley, Stephen, 299
durable power of attorney, 76, 109, 261, 285
Durrett, Charles, 318-319
dysphagia, see swallowing difficulties
E
early-onset Alzheimer’s, see familial Alzheimer’s
eating, see diet and food
see also hydration; swallowing difficulties
Eden Alternative, The, 244-245, 249-250
Eden at Home, 245-246
Effexor, 52
Ehrenreich, Barbara, 256
elder care attorneys, see legal issues
elder cohousing, see cohousing
Elm Haven, 171-175, 178-180, 190-206, 208-223, 225, 227-228, 234-237, 241-244, 253, 255-258, 263, 265, 278, 285
emergency rooms, 45, 115-119, 128-129, 213-216, 253, 278, 280
end-of-life concerns, 24, 137, 228-229, 260-261, 279, 285-286
entitlement programs, see Medicaid; Medicare
epidemic, 1, 3, 10
evolutionary medicine, 309
exercise, 2, 87, 106, 172, 295-296
expenses, see financial matters
eye care, 2, 111
contact lenses, 42, 87, 108-109
glasses, 109, 111-112, 237
F
falls, 12, 14, 21, 91, 105, 112, 128, 159, 174, 185, 212, 253, 258
familial Alzheimer’s, 2, 214, 320
Family and Children’s Services, 41, 57, 284
family caregivers, see caregivers
family histories, see genetics and dementia
family medicine, see doctors, primary care
fat, trans, see diet
fear, 20, 97, 156, 184, 239
fecal incontinence, see incontinence
feces, smearing of, 222
feeding tubes, 229, 260
financial matters, 78, 83, 100, 109, 122, 175, 210, 213, 224-225, 231, 254, 262, 266-267, 284, 312
See also cognitive function; long-term care, planning for; Medicaid; Medicare; Medigap
florbetapir, 289
food, see diet and food
Food and Drug Administration, 289, 325
Forbes, 83
Forget Memory: Creating Better Lives for People with Dementia, 238
frailty, 23, 48, 105-106, 235
France, dementia screening, 298
free radicals, 304
friends, 29, 36, 38-39, 76, 79, 88-89, 99, 150, 160, 177, 255, 263, 266, 275, 296-297
frontotemporal dementia, 274-276
funding for care, see financial matters
funeral arrangements, 24
G
Gandy, Sam, 320
genetics, and dementia, 295, 303
geriatric care managers, 60, 116, 283-285
geriatricians: 310
shortage of, 88
Germany, 311, 316
gerontology, 264
glasses, see eye care
Gleckman, Howard, 316-317
glucocorticoids, 304
Good Calories, Bad Calories: Challenging the Conventional Wisdom on Diet, Weight Control, and Disease, 308
grape pie, 222-223
Green House Project, The, 246-249
Greenway, 77-79, 83-86, 88-91, 93-95, 97-105, 111-115, 117-128, 164-166, 172, 175, 210, 249, 263
grief, 188-189
See also end-of-life concerns; living grief
grooming, 143, 191
Grossman, Murray, 275
growth factors, 304
guardianship, 75-76
guilt, 11, 60-61, 79, 95-97, 131, 145, 157, 187, 297
Gut and Psychology Syndrome (GAPS) diets, 308
H
Hadas, Rachel, 276
hair brushing, see grooming
Harvard School of Public Health, 311
Harvard University, 244, 301, 311
head trauma, 295
Health and Human Services, Dept. of, 321-323
health care proxy, 40, 213, 261, 279, 285
Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act, 323
heart disease, see cardiovascular disease
helplessness, 245
heredity and dementia, see genetics and dementia
herpes virus HSVI, 304
Hipsaver®, 159, 163, 181, 216, 219
hitting, see agitation; violence
hoarding, 21, 54, 283
holidays, 206, 221, 224
home care, see home care aides; Eden at Home; nurses, visiting
home care aides, 13, 36, 46, 74, 103-105, 113-117, 119, 121-123, 129, 131, 166, 176, 181, 212, 231, 284, 322
honesty, 22, 152, 239
HOPE Act, see Health Outcomes, Planning, and Education for Alzheimer’s Act
hospice, 261, 280, 322
hospitalization, 130-138, 245
and heroic measures, 280
see also emergency room
housework: difficulties with, 21, 58, 269, 283
humor, 100, 137, 141, 243, 255, 278, 281
hydration, see dehydration
hyperoral behavior, 260, 271-272, 275-276
hypersensitivity, 186
hypomania, 53, 268, 275
I
I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s, 239-255
incontinence, 19, 43, 57, 115, 120-122, 130-131, 136, 144, 166, 175, 181-182, 194, 214, 220, 239, 266, 284
medication for, 188, 199-200
infection:
as possible cause of dementia, 254, 302
urinary tract, 158, 166, 194
inflammation, 301, 304-305
injuries, 44-45
see also falls
instrumental activities of daily living (IADLs), 58
insulin resistance, 106, 108, 280, 297, 305-309
intentional communities, 14, 28-29, 151, 232, 318-319
and long-term care, 231, 318-319
intubation, 229
irritability, 55, 142, 158, 269
see also anger
invisibility, of caregiving, 146, 148
isolation, as risk factor for dementia, 9-10
see also withdrawing
Italy, 299
J
Johns, Ha
rry, 323
judgment, poor, 53-54, 57, 274-275
K
Kessler, Lauren, 186, 221
ketogenic diet, see diet, ketonic
ketonic diet, see diet, ketonic
kicking, 204
King and I, The, 132
Kyushu University, 306
L
LaBastille, Anne, 9
La Leche League, 63
language function, 19, 53, 89, 128, 134, 149-150, 152-153, 231-232, 235, 238-240, 253-254, 274-276
laughter, see humor
lawyers, see legal issues
Learning to Speak Alzheimer’s, 239
legal issues, 40, 254, 285
See also end-of-life concerns
Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home, 244
lithium, 269
living grief, 188-189
living wills, 40, 116, 285
loneliness, 35, 84, 94, 105, 120, 164, 239, 245
longevity, 16
Longo, Frank, 289-291
long-term care: planning for, and insurance, 58, 313-320
See also cohousing; Medicare, Medicaid
Long-term care service agencies, 122, 212
Long-term Living, 248
look-back period, see Medicaid
lying, therapeutic, 22, 152, 186
M
Mace, Nancy, 40
mammograms, 90
Maple Grove, 77-78, 131, 167, 171
massage, see body work for elders
mastectomy, 65, 90, 181
meals, see diet and food
Meals on Wheels, 34, 57
Medicaid, 244, 257, 266-267, 279, 285
application for, 225, 244, 254, 261, 285
assets and, 210, 225, 254, 267, 285
“gifting” and, 254, 262, 264, 285
government expenditure compared to unpaid caregiving, 1-2
Green House Project and, 248
look-back period and, 211, 254
Medicare compared with, 58
nursing homes and, 211, 250, 256
penalty period and, 262
spend-down and, 58, 254
Medical Orders for Life-Sustaining Treatment form, 229
Medicare, 84, 210, 266, 288
custodial care not covered by, 58
discharge process defined by, 164
end-of-life discussions and, 229
government expenditure compared to unpaid caregiving, 1-2
Green House Project and, 248
Medicaid compared with, 58
Medigap and, 36, 266-267
payroll taxes and, 316
vision screenings covered by, 298
medication:
anti-anxiety, 52
anti-depressant, 52, 104