In Santa Barbara, California, Ken Kosik’s university research team thought it might have one answer: Julie Cohen, “Studying the Outliers,” UC Santa Barbara Current, September 1, 2015; Mimi Liu, “UCSB Researchers Find Possible Factor to Delay Onset of Alzheimer’s,” Daily Nexus, October 1, 2015; Geoffrey Riley, “Taking Steps Now to Avoid Alzheimer’s,” Jefferson Public Radio, February 1, 2016; author’s interview with Ken Kosik, March 2, 2015.
Tyler thanked him for the opportunity: Research visit by Tyler DeMoe to the University of Pittsburgh, June 11, 2012.
After talking to a genetic counselor: Author’s interview with Tyler DeMoe, June 12, 2012.
TWENTY-SEVEN: ALL THE CARDS ARE ON THE TABLE
Seated at a conference table: Visit of Lori McIntyre to the University of Pittsburgh, May 4, 2012.
“I threw my hardship card on the table”: Author’s interview with Steve McIntyre, May 4, 2012.
As a nurse, Robin Tjosvold had worked in settings: Author’s interview with Robin Tjosvold, May 2012.
“He’s taking the whole thing like a champ”: Author’s interview with Jessica McIntyre, August 15, 2012.
To Steve, it wasn’t just the gradual loss of his wife that stung: Author’s interview with Steve McIntyre, May 2012.
But Lori said the silence of her friends was understandable: Author’s interview with Lori McIntyre, May 2012.
she and Steve sat on a conference call with Bill Klunk: Author’s notes from conference call, November 9, 2012.
TWENTY-EIGHT: COMING HOME
Steve wanted to hire a caregiver: Author’s interview with Steve McIntyre, November 26, 2013.
Robin drove to her parents’ house: Author’s interview with Robin McIntyre, November 14, 2013.
That fall, when Steve had to be hospitalized with pancreatitis: Author’s interview with Steve McIntyre, November 26, 2013.
In their phone call: Author’s interview with Karla Hornstein, November 20, 2013.
The day after Thanksgiving 2013: Accounts of Lori’s move into the nursing home compiled from author’s interviews with Steve McIntyre and Karla Hornstein.
Bill Klunk volunteered to help: Author’s interview with Steve McIntyre, February 21, 2014.
There is a curious symmetry to Alzheimer’s: “Stages of Alzheimer’s,” Alzheimer’s Association, http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp?type=brainTourFooter.
TWENTY-NINE: PALPABLE MOMENTUM
in May 2012, the Obama administration named Alzheimer’s disease: National Alzheimer’s Plan 2012, p. 3.
“The question is, can we really beat this disease?”: Author’s interview with Randy Bateman, January 12, 2016.
By comparison, the NIH spends $3 billion a year on AIDS research: Monica Brady-Myerov, “Alzheimer’s Funding Lags Behind Other Diseases,” WBUR, October 20, 2011; “Generation Alzheimer’s: The Defining Disease of the Baby Boomers,” Alzheimer’s Association, 2011.
The Alzheimer’s Association reported that in 2013: “New Alzheimer’s Association Report Reveals 1 in 3 Seniors Dies with Alzheimer’s or Another Dementia,” press release, Alzheimer’s Association, March 19, 2013.
Bateman’s DIAN trial: Press release, “Alzheimer’s Association Awards Largest Ever Research Grant to the Dominantly Inherited Alzheimer’s Network (DIAN) for Innovative Therapy Trials,” March 20, 2012.
“If you had asked me five years ago”: Gabrielle Strobel, “DIAN Forms Pharma Consortium, Submits Treatment Trial Grant,” Alzheimer Research Forum, December 22, 2011.
But the DIAN team had a significant scare at the end of 2012: Author’s interview with Randy Bateman, June 17, 2013.
Dr. Francis Collins, director of the NIH: “NIH’s Collins Delivers Positive News About Alzheimer’s Research Funding,” Alzheimer’s Association Advocacy Forum, April 23, 2013.
THIRTY: TO THE MOON AND BACK
On Friday evening, she spoke with her sister: Author’s interview with Deb DeMoe, June 8, 2013.
On Saturday, Dean headed to the other side of the state: Ibid.
Gail offered to babysit six-year-old Savannah: Author’s interview with Chelsey Determan, October 7, 2013.
Gail took a few steps onto the concrete sidewalk: Author’s interviews with Chelsey Determan and Savannah DeMoe, October 7, 2013; author’s interview with Deb DeMoe, June 8, 2013.
It was the best family reunion Robin McIntyre had ever attended: Author’s interview with Robin McIntyre.
A week later, when Karla was driving home: Author’s interview with Karla Hornstein.
The following year, on May 27, 2015: Author’s interviews with Deb DeMoe, January 23, 2016, and February 8, 2016. Confirmed by Tamara Donahue, research nurse coordinator, Washington University School of Medicine.
By early 2016, the DIAN trial had scanned fifty brains: Author’s interview with Randy Bateman, January 12, 2016.
“The current thinking is you need the cortex loaded with amyloid”: Author’s interview with Pierre Tariot, January 25, 2016.
Ten months after Gail’s death, a research team reported: Elizabeth Cohen, “Blood Test Predicts Alzheimer’s Disease,” CNN, March 9, 2014.
In December 2015, the Banner Institute launched GeneMatch: Author’s interviews with Pierre Tariot, January 25, 2016, and Eric Reiman, January 26, 2016.
In March 2015, after much badgering by Karla, Jamie DeMoe underwent a week of scans: Visit by Jamie DeMoe to the University of Pittsburgh, March 2015.
pharmaceutical company Biogen announced: Gabrielle Strobel, “Biogen Antibody Buoyed by Phase 1 Data and Hungry Investors,” Alzheimer’s Research Forum, March 25, 2015.
Paul Aisen, whose A4 study was about halfway to its goal: Author’s interview with Paul Aisen, January 15, 2016.
Days later, the Mayo Clinic published findings: Cynthia Koons, “Alzheimer’s Debate Revived Even as Biogen’s Drug Trial Advances,” Bloomberg News, March 25, 2015.
Reiman recalled his dismay: Author’s interview with Eric Reiman, January 26, 2016.
As she learned about each new development in the field: Author’s interview with Karla Hornstein, 2016.
Index
A note about the index: The pages referenced in this index refer to the page numbers in the print edition. Clicking on a page number will take you to the ebook location that corresponds to the beginning of that page in the print edition. For a comprehensive list of locations of any word or phrase, use your reading system’s search function.
academia, currency of credit in, 202
acetylcholine, 87, 218
AC Immune, 249–50, 288
“AD2” (patient), 100
aducanumab, 287
Afghanistan, 40
age-related dementia, 4
AGFA company, 96
Agnes (Julia’s twin), 117–18, 255
AIDS, 4, 275
Aisen, Paul, 170, 231–35, 236, 237, 247, 266, 285, 288
Alayna (Dawn’s daughter), 137, 158, 214, 215, 224
Albert, Marilyn, 117, 153–55
Alpine, Tex., 135
Alzheimer, Alois, 4, 5, 7–12, 24, 46, 69
Alzheimer, Cecilie, 8
Alzheimer, Johanne, 8
Alzheimer’s Association, 38, 97, 108, 109, 172, 196, 197, 201, 261, 275
Alzheimer’s disease, 59, 91, 169, 196, 274
age of onset in, 254–55
in aging population, 231
amyloid-versus-tau debate in, 169–76
autosomal dominant mutations in, 93
Boston conference on, 116
brain changes in, 64–65, 235
brain imaging of, 95–102
“the cascade” in, 109
cholesterol in, 86
as confused with senility, 12
consequences of, 3
damage to friendships in, 197–98
depression in patients with, 209–11
diagnosing of, 4–7, 111
diet and, 85–86
drug treatments for, 56–57, 93–94, 95, 144�
�45, 204, 222–24, 287–88
early intervention in, 6
early-onset, 6–7, 32, 45, 66
early stages of, 247
epigenetic changes in patients of, 117–18
Federoff test for, 285–86
financial costs of, 194, 275
first identification of, 4
forecasting of, 117
funding fatigue in research on, 223
funding for research in, 275–77
gene cloning in, 38, 43
gene defects in, 42–43
genetic mutations and, 6–7, 45
genetic roots of, 23, 30–36, 38, 59, 61, 65–66, 68, 122–23
genetic testing for, 130, 286
glucose and, 172–73
growing recognition of, 119–20
Heston’s study of, 60–61
homozygotes in, 131
incidence of, 3–4, 5, 232–34, 238
key mechanisms responsible for, 94–95
lack of caregiver reimbursement in, 173
memory distortions in, 54
misidentification of, 30–31
MMSE test in, 235–36
mortality from, 3–4, 37
paisa mutation in, 129–30
physical signs of, 5
presymptomatic, 109–10
prevention of, 132
prevention trials in, 172–75
PS1 mutation in, 69
psychiatric disinterest in, 11
as public health crisis, 46
rationalizations for, 123
research in, 37–38
ripple effects of, 173
spouses of patients with, 54
stigma associated with, 130, 204
suicide as response to, 189
symptoms of, 5, 6
tacrine in treatment of, 86–87
wandering as hallmark of, 196
Alzheimer’s Disease Anti-inflammatory Prevention Trial (ADAPT), 93–94
Alzheimer’s Disease Cooperative Study, 170, 231–32
Alzheimer’s Disease Research Center, 117, 215, 216, 259
Alzheimer’s Study Group, 175
Alzheimer’s Therapeutic Research Institute, 231
Amerada Petroleum Corporation, 16
American Academy of Neurology, 102
American Nursing Home, 62
Amersham, 101
amyloid, 116, 154, 204, 211, 221, 222, 223, 232, 236–37, 246, 247, 248, 249, 250–51, 266, 287
amyloid beta protein, 42–43, 44, 45, 95, 96, 169–70
amyloid plaques, 6, 42, 233–34
amyloid precursor protein (APP), 42, 45–46, 67, 85, 92, 169–70, 232
amyloid proteins, 6, 169–76
amyloid-related imaging abnormalities (ARIA), 249, 287
Amyvid, 101, 111
Anderson, Gary, 19, 72, 186, 197–98
Angelou, Maya, 167
Anoka State Hospital, 60
Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4), 233, 236, 285, 288
Antioquia, University of, 123
Antonio (driver for Francisco Lopera’s team), 124
ApoE4, 233, 247–48, 286
apolipoprotein (ApoE) gene, 171, 172, 173–74, 189, 233
APP gene, 118, 122, 126
APP mutation, 65, 202
Arango, Juan Carlos, 128
Archives of Neurology, 37
Aricept, 137, 144, 145–46, 153, 188, 218, 234
assisted suicide, 189
atherosclerosis, 9, 31
Aurelius, Marcus, 4
autosomal dominance, 23, 32
autosomal dominance inheritance, 65
autosomal dominant mutations, 93, 110
rarity of, 66
baby boomers, 4, 201, 232, 274
Bakken, Henry O., 16
Bakken Formation, 16, 193–94
Banner Alzheimer’s Institute, 171, 173–74, 175, 199, 201, 203, 225, 232–33, 245–52, 285, 286
Baptists (plaques), 169–76, 204, 266
Barton, Joe, 148, 149, 150, 151
Bateman, Randy, 207, 224, 225–26, 231, 274–77, 285
Beggs, Okla., 86, 87
Begotá, 126
Belmira, 123
Berlin West Africa Conference, 96
Berry, Don, 200
beta-amyloid protein, 86, 94, 97, 99, 110, 145, 171, 174
Biogen, 287, 288
biomarkers, 110, 144–45, 172, 174, 199
Blessed, Gary, 31
blood-brain barrier, 95, 96, 98–99
blood pressure, 56
Bobbie (Gail’s sister), 278
bone density, 174
brain, 94, 169
biopsies of, 32
brain imaging, 95–102, 172
brain shrinkage, 172
Branesky, Pat, 281
BRCA1 gene mutation, 233
breast cancer, 233
Brigham and Women’s Hospital, 118
Brighter Than a Thousand Suns (Jungk), 38
Brorby, Zack, 256, 257
Brule, Wis., 83
Bruni, Amalia, 69
Calabria, 31, 34
California, University of, 234
Campbell, Glen, 4
cancer, 3, 4, 275
canning cars, 160
cardiovascular disease, 85
Catholic University of Leuven, 125
Chavarriaga Mejía, María Luisa, 124–25
cholesterol, 171, 173–74, 220
cholinesterase inhibitor, 218
chromosome 14, 67
chromosome 19, 171, 233
chromosome 21, 42–43, 45, 65, 66, 67, 118, 170, 202
Clinical Trials in Alzheimer’s Disease, 237
coffee, 146
Cognex, 87, 89, 111, 144
Cohen, William S., 119
Collins, Francis, 277
Colombia, 121–22, 124, 126, 129–30, 201, 203, 246, 250
Committee on Energy and Commerce, 148
Congo Red, 96, 97, 98–99
cortex, 10
cortical biopsy, 32
crenezumab, 249–50, 251–52, 285, 288
Creutzfeldt-Jakob disease, 42
curanderos, 203
cyclotron, 95
dementia, 5, 11, 189
DeMoe, Brian, 16, 17, 18, 20, 26, 28, 50, 54–55, 63, 64, 71–72, 79, 109, 111, 123, 133, 137, 181, 184, 187–88, 196–97, 208, 209, 214, 239, 242, 244, 254, 264
Alzheimer’s symptoms in, 104–5
death of, 191, 193
deterioration of, 156–57, 159–60, 164, 190–91
drug abuse in, 55
drugs taken by, 188
in memory care facility, 161–65, 185–86
in Menot nursing home, 187–88
mood swings of, 160, 162–63
personality changes in, 55
sense of humor of, 51
testing and diagnosis of, 105–6
DeMoe, Dean, 16, 17, 18–19, 28, 29, 50, 63, 72, 74–77, 105, 106, 109, 111–12, 137, 156, 161, 177, 178, 180, 181, 186, 187–90, 193, 208, 210, 212, 217, 239, 253–54, 255, 271, 276, 279, 281–82
Alzheimer’s symptoms of, 190
asbestos removal job of, 76–77
car wreck of, 50
in DIAN study, 224, 284–85
loyalty valued by, 75
as positive for Alzheimer’s mutation, 138–41
return to oil fields of, 193–95
work ethic of, 75
DeMoe, Deb Clark, 76–77, 106, 138–39, 140, 141, 179, 187–90, 242, 276, 279, 282, 284, 285
DeMoe, Doug, 16, 17, 18–19, 20, 28, 50, 53, 55, 62, 63, 71, 72–73, 75, 107, 109, 111, 133, 137, 140, 179, 181, 184, 187, 194, 197, 208, 209, 224, 239, 254, 271, 272
Alzheimer’s symptoms in, 104–5
balance problems of, 186
deterioration of, 185–86, 195
nickname of, 72
in nursing home, 196–98
reactive airway disease of, 185, 196
testing and diagnosis of, 105–6
wandering o
f, 196
workplace injury of, 185
DeMoe, Gail, 14–18, 20, 21, 22, 23, 24–25, 50, 51, 52, 53–54, 55–56, 58, 71, 78, 83–84, 85, 87, 89, 104, 105, 106, 111, 137, 139, 156–58, 161, 180, 184, 185–86, 190, 191, 194, 195, 197, 239–40, 242, 254, 267, 278–79, 289
Brian’s deterioration and, 160
death of, 280–83
failing health of, 195, 208–9
fibromyalgia of, 182–83
and Jamie’s positive test, 182
Moe’s abusiveness and, 26–29, 48–49
Moe’s death and, 62–64
nervous breakdowns of, 49, 173, 279
DeMoe, Galen “Moe,” 14–18, 19, 20, 21, 22, 23, 26, 52, 56, 59, 71, 77, 84, 87, 106, 107, 123, 132, 134, 139, 173, 244
abusiveness of, 26–29, 48–49
arrest and commitment of, 28–29, 48–49
autopsy report for, 64–65
death of, 62–64
diagnosis of, 24
firing of, 25
Jamie’s relationship with, 77–78
onset of symptoms in, 13, 21–22
personality changes in, 24–25
at St. Cloud, 49–50, 53–54, 56–57
study of, 56–57
DeMoe, Jamie, 16, 18, 20, 25, 26, 50, 54, 62, 71, 77–79, 110, 112, 140, 183–84, 187, 195, 210, 271, 279, 281
depression of, 209–11
in DIAN trial, 286–87
pessimism of, 79
positive genetic test of, 181–82
study participation of, 211–13
symptoms of, 210
DeMoe, Jennifer, 72–73, 107, 161, 162, 177, 178, 179, 180, 185–86, 194, 196
genetic testing of, 178
DeMoe, Jerry, 22, 23, 64, 83–92, 104, 105, 106, 109, 111, 132, 134, 144, 173, 178, 227, 244, 254
aggressiveness of, 90–91
Alzheimer’s diagnosis of, 85
Alzheimer’s symptoms in, 83–85, 87, 88–89
death of, 91–92
DeMoe, Karla, see Hornstein, Karla DeMoe
DeMoe, Lola, 72, 179
DeMoe, McKenna, 140, 179, 194, 195, 284
DeMoe, Raymond, 22, 23–24
DeMoe, Savannah, 184, 198, 208–9, 210, 211, 212–13, 242, 279–81, 283
DeMoe, Sharon, 84–85, 86, 87, 88–89, 90–91, 133, 174, 178, 226–27, 244, 254
DeMoe, Sheryl (Sheryl Grammer), 84, 85, 86, 87–88, 91, 92, 178, 244
DeMoe, Tyler, 140, 141, 179, 188, 194, 195, 210, 255–57, 267
DeMoe, Vic, 14, 22, 108
DeMoe, Wanda, 15, 30, 59, 83, 90, 103, 114, 186
decline of, 21–23
DeMoe, Yancey, 123, 162, 163–64, 183, 208, 210, 267
DeMoe family, 67, 69, 83, 103, 107, 108, 110, 111, 119, 130, 133, 142, 154, 208
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