Inside the Dementia Epidemic: A Daughter's Memoir

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Inside the Dementia Epidemic: A Daughter's Memoir Page 30

by Martha Stettinius


  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
/>   diabetes, 280, 295, 297, 305-306, 309-310

  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

 

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