Inside the Dementia Epidemic: A Daughter's Memoir
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for agitation, 172, 248
for Alzheimer’s, 16, 40, 120, 283, 293-294
help taking, 27, 47, 77, 85-86, 106, 141, 174
paying for, 84, 266
Medigap policies, 36, 84, 210, 267
meditation, 272
melatonin, 212
memory:
boxes, 173
care, 78, 124, 131, 167, 186, 221, 231, 256, 258, 285
concealing loss of, 44
consultations, 310
costs, 175, 200, 244
description, 171-173
loss
short-term memory loss, 42-43, 58, 60
long-term memory loss, 42, 58, 90, 137, 183, 195, 266
mild cognitive impairment, 17, 20, 52, 289-290, 296
“mixed” dementia, 2, 10, 312
money, see financial matters
mood swings, 18, 33, 44, 47
Mount Sinai Alzheimer’s Disease Research Center, 320
multi-infarct dementia, 2, 10, 15, 42, 53, 105, 120-121, 128, 162, 233
music, 78, 99, 132, 172, 202, 207-209, 225, 232, 255, 258, 263-264, 266, 270, 296
N
Namenda, 293-294
Nardil, 52
nasal spray of insulin, 306
National Alzheimer’s Project Act, 324
National Council of Certified Dementia Practitioners, 322
National Institute on Aging (NIA), 53, 290, 303, 320
National Institutes of Health, 290, 321
National Plan to Address Alzheimer’s Disease, 285, 321
National Sleep Foundation, 300
NCB Capital Impact, 248
nerve cells, see neurons
neurologists, 283-284, 296, 299, 310, 320
Neurology, 295
neurons, 280, 291, 295-297, 299-301, 304, 307
neuropsychological testing, 43, 53-54, 268, 283, 289
New York Times, 105, 229
non-hospital order not to resuscitate, 228
Northwestern University, 306
nurses:
discharge, 133, 137
in assisted living facilities, 117-118, 120-123
in elder cohousing, 319
in the Green House Project, 249
in the hospital, 134-137, 215-216
in “memory care,” 172, 178, 196-202, 209, 212-213, 222
in nursing homes, 258-260
in rehab centers, 140
visiting, 114
nursing homes, 40-41, 164-165, 255, 257
adjusting to, 259-261, 264
aides in, 163, 258-259
care plan meetings at, 157-159
cleanliness of, 161-162
costs, 257
dementia care units in, 162, 164, 211, 256
placement, evaluation for, 122-124
redesign of, 244-245
see also Eden Alternative; Green House Project
nutrition, see diet and food
nutritionists, 106, 158-159, 297, 311
O
obesity, see weight
obsessive-compulsive personality disorder, 51-54, 268
obstructive sleep apnea (OSA), 298-300
office for the aging, see area agencies for aging
Omega 3, 308
Omega 6, 308
ostracism, 103
P
pain, 115, 127, 130, 142-144, 158, 253
Paleo diets, 308-309
paranoia, 19, 37, 220
Parkinson’s disease, 40
patient review instrument (PRI), see nursing homes, evaluation, placement for
pelvis, fracture, 128-129, 133, 146, 149, 250
Penny Wise, Pound Foolish: Fairness and Funding at the National Institute on Aging, 320
pension, 77, 266
personal care plan, 235
personality changes, see behavioral changes
person-directed care, 151-152, 245, 247
personhood, 150, 239-240, 246-247, 264, 276, 281
pets, as therapy, 107, 171, 245, 265, 271, 280
PET scans, 289-290
physical therapy, 114, 140-142, 146, 158, 249-250, 258, 266
pills, see medication
plants, 194, 245, 247, 250, 265
plaques, 276, 289-291, 304-309
pneumonia, 19, 229, 280
podiatrist, 112, 175
Power, G. Allen, 264
power of attorney, see durable power of attorney
pre-diabetes, see insulin resistance
prescriptions, see medication
Prevention of Progression to Dementia in the Elderly, 295
private aides, see home care aides
psychiatrists, 52-53, 57, 104, 269, 275
psychologists, elder care, 40, 47-48, 74, 284
Q
quality of life, 229
R
Rabins, Peter, 40
Radin, Lisa and Gary, 274
Rankin, Katherine P., 276
Razadyne, 293
reading, see cognitive function; language function
recognition of loved ones, 220, 232, 263, 266, 279
redirection, 136, 152, 203
reflexes, 19
rehab, 58, 133, 135-136, 139-146, 148, 161, 164, 239, 255, 258
research, dementia, 2, 3, 20, 108, 254, 276, 289-291, 293-307, 312, 320-325
resident assistants (RAs), 91, 98, 100-101, 111, 113, 117-122, 127-128, 150, 166, 192, 194, 196-199, 203-206, 208-209, 214-215, 217, 221-223, 234-235, 241, 243, 253, 255, 257, 263
in Eden Alternative nursing homes, 245
in The Green House Project (“Shahbazim”), 247-249
resilience, 273
respite, see caregivers, caring for self
restraints, 134
rigidity, 19, 235-236, 243, 266
risk factors, 2-3, 51, 295-302, 311
Robert Wood Johnson Foundation, 248
role reversal, 43, 55, 97, 108, 128
rosiglitazone, 306
rowboat, 183-185, 194
Rubinstein, Nataly, 283
Rush University Medical Center, 296
S
safety: 58, 217, 323, 325
bed rails, 45, 112, 115, 174
body pillow, 258
preventing falls, 174, 258
rubber mat, 258
see also alarms; falls
sandwich generation, 11, 22, 96, 119, 133, 202, 270, 273
scatolia, see feces, smearing of
schizophrenia, 23
seizures, 285
self-expression, see cognitive functioning
selfhood, see personhood
Senior Cohousing: A Community Approach to Independent Living, 318-319
sexual behavior, 113, 213-219
Shahbazim, see Resident Assistants, in The Green House Project
shopping, 58, 76
showering, 57, 101, 106, 121, 131, 179, 181
silver tsunami, 2, 317
sleep apnea, and dementia, see obstructive sleep apnea
sleep disturbances, 2, 19, 46-47, 53, 100, 103, 196-199, 212, 220, 298-301, 305
in bipolar II disorder, 269
slowing down, 153, 164, 190, 192, 273
smell, loss of sense of, 291
smoking, 35, 38, 56, 85, 106, 275, 295, 311
socialization, 60, 296
Social Security, 51, 77, 83, 266
Social Services, Dept. of, 244
social workers, 140, 157, 162, 205, 246, 249, 322
see also Eden at Home; Green House Project
soiling, see incontinence
speech, see language function
spend down, see Medicaid
spinal fluid tests, for Alzheimer’s, 290
spoon-feeding, 78, 173, 234-235, 253, 256, 259, 278, 284
Stanford University, 289
stem cell treatments, 304
Strange Relation: A Memoir of Marriage, Dementia, and Poetry, 276
stress:
as risk factor for dementia, 304
in caregivers, see caregivers
stroke, 10, 15, 42, 53, 105, 120-122, 128, 162, 233, 280, 289, 295-296, 300, 305, 308, 314
see also multi-infarct dementia
student volunteers, 77, 87-88, 99, 103
sugar, see diet: food and eating
sun-downing, 142
support:
books for caregivers, 40, 238-239, 283
for people with dementia, 311-312, 321-323
groups for caregivers, 39-40, 57, 60, 150, 205, 254, 284, 312, 322
surgery, 116-117
swallowing difficulties, 19, 43, 197, 235, 279
swimming, 147
T
tangles, see tau protein tangles
Taubes, Gary, 308
tau protein tangles, 276, 290, 301-302
tests, for Alzheimer’s disease, 43, 289-291
The 36 Hour Day, 40, 204
Thies, William, 3
Thomas, Jude, 244
Thomas, William H., 244-249
toenails, 112
toileting, 18-19, 43, 57, 106, 113, 155, 175, 185, 194, 208, 220, 266, 284
scheduled, 222
see also incontinence
Toronto Rehabilitation Institute Sleep Research Laboratory, 300
training, of dementia care staff,115, 172, 206, 284, 322-323
transferring, 57, 145, 155, 173, 243, 266
transitions in care, 122, 133, 137, 164-167, 173, 175, 284, 318
transportation, 13, 58, 60, 99, 133, 265-267, 270
triglycerides, 308
tube feeding, see feeding tube
twelve-step programs, 10, 23, 51, 66, 68, 71, 129, 132, 198, 207, 266, 273, 275
type III diabetes, 305
U
University of California, San Francisco, 299
University of Pittsburgh Medical Center, 305
University of Rochester Medical Center, Memory Care Program, 310
urinary incontinence, see incontinence
urinary tract infection, see infection
usefulness, 153
V
vaccines, 301
vascular dementia, see multi-infarct dementia
Vienna Boys’ Choir, 207-209
violence, 114, 203-206, 222
viruses, 304
vision checkups, see eye care
vitamin B12, 283
vomiting, 115
W
walkers, 108, 113-115, 143, 145, 155, 163-164, 237, 265
walking, 19, 57, 87-88, 105-106, 111-112, 115, 123, 127, 185, 193, 235, 237, 266
wandering, 19, 145, 162, 166, 172, 179, 247
Washington University School of Medicine in St. Louis, 299
Washington University’s Sleep Medicine Center, 299
weight:
as a risk factor for dementia, 51, 106, 306-308
loss, see diet and food
training, 296
wellness visits, 311
Weston A. Price Foundation, 308
wetting, see incontinence
What Are Old People For? How Elders Will Change the World, 249
What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia, 274-276
wheelchairs, 143, 162, 265-266, 278, 281, 285
Why We Get Fat, and What to Do About It, 308
withdrawing, 53-54, 269, 277
Woodside, 136-137, 139-146, 161-164, 254-267, 270, 278-282
work-life balance, see caregiving, and job demands
writing, as emotional release, 31, 95-96, 115
Y
Yee, Robert, 313
Z
Zeisel, John, 239, 255
Mom at 62, and me at 30, in 1995
Mom, 77, with Suzanne, a massage therapist who specializes in bodywork for elders, in 2010
(photo by Jason Kates van Staveren)
Mom, 79, in 2012
About the Author
Martha Stettinius is a “sandwich generation” mom; an editor and writing instructor with a master’s in English Education from Teachers College, Columbia University; and an advocate for the needs of family caregivers. She serves as a volunteer representative for New York State for the National Family Caregivers Association.
For fourteen years she’s lived with her husband and two children in an intentional community where they share some common space and community meals. She’s grateful that nearly each day she learns something new from her neighbors about how to live a full life.