The Inheritance

by Niki Kapsambelis

  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