Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  APPENDIX C: RISK FACTORS AND ANTIDOTES FOR DEMENTIA

  295 As a large French multi-center: Gillette, et al., “Prevention of Progression to Dementia in the Elderly: Rationale and Proposal for a Health-Promoting Memory Consultation (Task Force Members),” The Journal of Nutrition, Health and Aging, Oct. 12, 2008, http://ianacongress.eu/docs/sophie.pdf, 6.

  295 A 2011 study published: G.L. Bowman, ND, MPH, L.C., Silbert, MD, MCR, D. Howieson, PhD, H.H. Dodge, PhD, M.G. Traber, PhD, B. Frei, PhD, J.A. Kaye, MD, J. Shannon, PhD, MPH, and J.F. Quinn, MD, “Nutrient Biomarker Patterns, Cognitive Function, and MRI Measures of Brain Aging,” Neurology, December 28, 2011, http://www.neurology.org/content/early/2011/12/28/WNL.0b013e3182436598.abstract.

  295 Because aerobic exercise increases: Alzheimer’s Association, “Stay Physically Active,” http://www.alz.org/we_can_help_stay_physically_active.asp. Copyright © 2012 Alzheimer’s Association®. All rights reserved.

  296 A recent study by neurologists: Aron S. Buchman, MD, Patricia Boyle, PhD, Li Yu, PhD, Raj C. Shah, MD, Robert S. Wilson, PhD, and David A. Bennett, MD, “Total Daily Physical Activity and the Risk of AD and Cognitive Decline in Older Adults,” ScienceDaily, April 18, 2012, www.sciencedaily.com/releases/2012/04/120418203530.htm.

  296 In another study, subjects who walked: Longo, “The Coming Epidemic of Dementia and How It Can Be Diagnosed, Treated, and Prevented.”

  296 In a third study, people with mild cognitive: Ibid.

  297 The Alzheimer’s Association recommends: Alzheimer’s Association, “Adopt a Brain-Healthy Diet,” http://www.alz.org/we_can_help_adopt_a_brain_healthy_diet.asp. Copyright © 2012 Alzheimer’s Association®. All rights reserved.

  298 In a study of elderly people: Guyonnet S Gillette, G. Abellan Van Kan, S. Andrieu, J.P. Aquino, C. Arbus, J.P. Becq, C. Berr, S. Bismuth, B. Chamontin, T. Dantoine, J.F. Dartigues, B. Dubois, B. Fraysse, T. Hergueta, H. Hanaire, C. Jeandel, S. Lagleyre, F. Lala, F. Nourhashemi, P.J. Ousset, F. Portet, P. Ritz, P. Robert, Y. Rolland, C. Sanz, M. Soto, J. Touchon, and B. Vellas, cited in Mary A. Rogers and Kenneth M. Langa, “Untreated Poor Vision: A Contributing Factor to Late-Life Dementia,” American Journal of Epidemiology, Oxford University Press, Vol.171, no.6, Feb. 11, 2010, http://aje.oxfordjournals.org/content/171/6/728.full#fn-group-1.

  299 A study led by the University: Jennifer O’Brien, “Sleep Apnea Linked to Increased Risk of Dementia in Elderly Women,” The University of California, San Francisco, Aug. 9, 2009, http://www.ucsf.edu/news/2011/08/10408/sleep-apnea-linked-increased-risk-dementia-elderly-women.

  299 Other researchers find: Michael C. Purdy, “Marker for Alzheimer’s Disease Rises During Day, Falls with Sleep: Up-and-down cycle flattens as age disrupts pattern,” Sept. 26, 2011, Washington University in St. Louis, http://news.wustl.edu/news/Pages/22709.aspx.

  299 In 2010, researchers in Milan: American Academy of Sleep Medicine, “CPAP Therapy Restores Brain Tissue in Adults with Sleep Apnea, Study Finds,” ScienceDaily, June 7, 2010, http://www.sciencedaily.com/releases/2010/06/100607065550.htm.

  300 We know that the obese: American Thoracic Society, “Relationship Between Overnight Rostral Fluid Shift and Obstructive Sleep Apnea in Non-obese Men,” ajrccm.atsjournals.org, Nov. 14, 2008, http://ajrccm.atsjournals.org/cgi/content/abstract/179/3/241.

  300 The National Sleep Foundation: National Sleep Foundation, “Sleep Apnea and Sleep,” http://www.sleepfoundation.org/article/sleep-related-problems/obstructive-sleep-apnea-and-sleep.

  300 According to the American Sleep: American Sleep Apnea Association, “Sleep Apnea,” http://www.sleepapnea.org/learn/sleep-apnea.html.

  301 Vaccines to reduce the build-up: Alzheimer Society of Canada, “Alzheimer’s Disease and Related Dementias—In Pursuit of a Cure.”

  301 Similar trials in 2000 resulted: Diamond, quoted in Krewen.

  301 Other studies are being conducted: Alzheimer Society of Canada, “Alzheimer’s Disease and Related Dementias—In Pursuit of a Cure.”

  301 Startling new research in February: Gina Kolata, “Path is Found for the Spread of Alzheimer’s,” New York Times, Feb. 1, 2012, http://www.nytimes.com/2012/02/02/health/research/alzheimers-spreads-like-a-virus-in-the-brain-studies-find.html.

  APPENDIX D: IS IT “ALL IN THE FAMILY”?

  303 In Alzheimer’s disease over age sixty: Alzheimer’s Disease Education & Referral (ADEAR) Center, A Service of the National Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services, “Alzheimer’s Disease Genetics Fact Sheet,” NIH Publication No. 11-6424, June 2011, http://www.nia.nih.gov/Alzheimers/Publications/geneticsfs.htm.

  APPENDIX F: SWEET POISON: THE TOXIC TIDE OF SUGAR

  305 After I discovered that: “Sleep Apnea May Increase Insulin Resistance,” American Thoracic Society press release, May 17, 2010, http://www.thoracic.org/media/press-releases/conference/articles/2010/ih-and-insulin-resistance.pdf, 1.

  305 During sleep, insulin levels: Denise Grady, “Link Between Diabetes and Alzheimer’s Deepens,” New York Times, July 17, 2006, http://www.nytimes.com/2006/07/17/health/17alzheimer.html.

  305 Also, a study at the University: “Sleep Apnea May Increase Insulin Resistance.”

  305 Many researchers now describe: “Discovery Supports Theory of Alzheimer’s Disease as Form of Diabetes,” Northwestern University press release, http://www.research.northwestern.edu/news/stories/2008/klein.html.

  306 Someone like me who is: Grady.

  306 Being overweight or obese: W.L. Xu, M.D., Ph.D., A.R. Atti, M.D., Ph.D., M. Gatz, Ph.D., N.L. Pederson, Ph.D., B. Johansson, Ph.D., and L. Fratiglioni, M.D., Ph.D., “Abstract: Midlife Overweight and Obesity Increase Late-Life Dementia Risk: A Population-Based Twin Study,” Neurology, May 3, 2011, http://www.neurology.org/content/76/18/1568.abstract.

  306 In 2010, researchers at Kyushu: Fisher Center, “Diabetes Linked to Brain Damage of Alzheimer’s Disease.”

  306 Another study has determined: Kolata, “A Squirt of Insulin May Delay Alzheimer’s,” New York Times, Sept. 13, 2011, D5.

  306 Some anti-diabetic drugs, such as: Alzheimer Society of Canada, “Alzheimer’s Disease and Related Dementias–In Pursuit of a Cure,” http://www.alzheimer.ca/english/media/research2011..htm.

  306 A team at Northwestern University: Northwestern University press release.

  307 In fact, a product called Axona®: “Genetic Profile Identified for Alzheimer’s Patients Showing Heightened Response to Accera’s Breakthrough Product Axona®,” Accera, Inc. news release, Freshnews.com, Oct. 17, 2011, http://www.freshnews.com/news/562352/genetic-profile-identified-alzheimer-s-patients-showing-heightened-response-accera-s-br.

  307 A prescription, FDA-designated: Accera, Inc., “Axona,” http://www.accerapharma.com/axona.html.

  308 I follow the advice of Gary: Gary Taubes, Good Calories, Bad Calories: Fats, Carbs, and the Controversial Science of Diet and Health (New York: Anchor Books, 2008), 454.

  308 Although I don’t pay attention: Emily Deans, M.D., “The Case for Evolution—Octopuses, Grandmothers, Iceland, and Poor Dr. T. Colin Campbell,” Evolutionary Psychiatry (blog), Sept. 4, 2010, http://evolutionarypsychiatry.blogspot.com/2010/09/case-for-evolution-octopi-grandmothers.html.

  309 Referring to the connection between: Deans, “Examining the Complicated Factors That Predispose Us to Dementia,” Evolutionary Psychiatry (blog), Sept. 20, 2011, http://www.psychologytoday.com/blog/evolutionary-psychiatry/201109/alzheimers-and-high-blood-sugar.

  APPENDIX G: THE BENEFITS OF “MEMORY CONSULTATIONS” AND EARLY DIAGNOSIS

  310 A French multi-center task force: Gillette, et al., 6.

  310 Memory care programs in: University of Rochester Medical Center, “Comprehensive Memory Care Program Fills Vital Need,” 2011, http://www.urmc.rochester.edu/referring-physicians/urmc-connection/spring-2010/facilities-and-programs/dementia-clinic.cfm.

  311 According to the Centers for Medicare: Charles Fiegel, “Medicare’s Missed Checkups: Few Seniors Get Wellness Exa
m,” American Medical Association, May 2, 2011, http://www.amaassn.org/amednews/2011/05/02/gvsa0502.htm.

  311 Many doctors—including my mother’s: Alzheimer’s Association, “International Survey Reveals Attitudes Towards Alzheimer’s Diagnosis and Treatment,” Alzheimer’s Association International Conference press release, Paris, July 20, 2011, http://alz.org/aaic/wednesday_1230amCT_news_release_intl_survey.asp.

  312 In their 2011 report Alzheimer’s Disease: Alzheimer’s Association, “2011 Alzheimer’s Disease Facts and Figures,” 47, http://www.alz.org/downloads/Facts_Figures_2011.pdf. ©2012 Alzheimer’s Association, all rights reserved.

  APPENDIX H: PLANNING FOR LONG-TERM CARE

  313 In March of 2010: Paula Span, “The New Old Age: Behind the Class Act, a Numbers Game,” New York Times, Sept. 18, 2011, http://newoldage.blogs.nytimes.com/2011/10/18/behind-the-class-act-a-numbers-game/

  313 By the fall of 2011, though: Gardiner Harris and Robert Pear, “Still No Relief in Sight for Long-Term Needs,” New York Times, Oct. 25, 2011, Sec. D, 1,6.

  314 If CLASS had existed successfully: Paula Span, “The New Old Age: Details on the Class Act,” New York Times, April 29, 2010, http://newoldage.blogs.nytimes.com/2010/04/29/details-on-the-class-act/.

  314 This amount would have been: Long Term Care Partners, “The Federal Long Term Care Insurance Program: Frequently Asked Questions,” http://www.ltcfeds.com/help/faq/basics.html.

  314 According to the Family Caregiver: Family Caregiver Alliance, “What Is Long-Term Care?” http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=440.

  315 If CLASS had existed years ago: The Henry J. Kaiser Foundation, “Health Care Reform and the CLASS Act,” April 2012, 2, http://www.kff.org/healthreform/upload/8069.pdf.

  315 According to Howard Gleckman: Howard Gleckman, Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis (New York: St. Martin’s Press, 2009), 177.

  316 The average annual premium: American Health Care Association, National Center for Assisted Living, “Financial Information: Understanding Long Term Care Insurance,” 3, http://www.longtermcareliving.com/pdf/ltc_insurance.pdf.

  316 Private long-term care insurance: Gleckman, 34-246.

  APPENDIX I: LONG-TERM CARE AN INTENTIONAL COMMUNITY

  318 He says that “people will only: Charles Durrett, Senior Cohousing: A Community Approach to Independent Living (Berkeley: McCamant/Durett, 2005), 123,184.

  319 Durrett describes how some: Ibid., 123-24.

  APPENDIX J: CONFRONTING THE EPIDEMIC AT THE NATIONAL LEVEL AND BEYOND

  320 According to the Alzheimer’s Association: Alzheimer’s Association press release, “Alzheimer’s Breakthrough Act: Alzheimer’s Association Statement,” Washington, D.C., July 23, 2009, http://www.alz.org/national/documents/statements_breakthroughact.pdf.

  320 In their May 2011 report: Susan Peschin, Penny Wise, Pound Foolish: Fairness and Funding at the National Institute on Aging, Alzheimer’s Foundation of America, May 2011, http://www.alzfdn.org/documents/NIA%20Report-Final.pdf, 3-4.

  320 The AFA quotes Sam Gandy: Sam Gandy, M.D., Ph.D., quoted in Alzheimer’s Foundation of America, Penny Wise, Pound Foolish, 9.

  321 The National Plan to Address: U.S. Department of Health and Human Services, National Plan to Address Alzheimer’s Disease, May 15, 2012, http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf.

  322 Currently, individual states may: Stimson, Sandra, CALA ADC AC-BC CDP CDCM, Founder and Executive Director, National Council of Certified Dementia Practitioners, personal communication, June 19, 2012.

  323 According to the Alzheimer’s Association: Alzheimer’s Association, “The Hope for Alzheimer’s Act,” 2010, http://www.kintera.org/site/pp.asp?c=mmKXLbP8E&b=6301189. ©2012 Alzheimer’s Association, all rights reserved.

  324 A second pending piece of legislation: Congress, House, Alzheimer’s Breakthrough Act of 2011, 112th Congress, 1st sess., HR 1897, May 13, 2011, 1, http://www.kintera.org/atf/cf/%7BB96E2E84-AF7D-4656-9C86-285306F00E19%7D/HR%201897%20%28GPO%205-30%29.pdf.

  324 When I compared the original text: Govtrack.us, “Text of S. 1492 [111th]: Alzheimer’s Breakthrough Act of 2009,” http://www.govtrack.us/congress/billtext.xpd?bill=s111-1492.

  324 the 2011 version has back-pedaled: Congress, House, Alzheimer’s Breakthrough Act of 2011, 8.

  325 The AFA also supports: Alzheimer’s Foundation of America, No Time to Waste: Recommendations for an Integrated National Plan to Overcome Alzheimer’s Disease, Oct. 2011, 8-9, http://aspe.hhs.gov/daltcp/napa/cmtach17.pdf.

  325 In his introduction to this report: Harry Johns, Introduction, Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address, Alzheimer’s Association, 2011, 3. ©2012 Alzheimer’s Association, all rights reserved.

  Acknowledgments

  This is my favorite part—thanking the many people who’ve cheered me on. Without their support I doubt I could have worked on this project for seven years.

  Since I have changed the names and descriptions of most of the people and places in this book, I cannot use full names here for the people who live in my city. I wish I could. If you are one of those local folks, forgive me.

  Laura Shaine Cunningham, the Artistic Director of the Memoir Institute, helped me shape the manuscript into the book it is today, and I cannot thank her enough. Every new author should be as lucky as I was to meet Laura at the Omega Institute’s Memoir Festival and to build the kind of working relationship that we enjoy. I will be forever grateful for her insight, editing skills and unwavering support of this project.

  Kathryn Craft, the owner of Writing-Partner.com, read an early draft in 2008 and wrote a brilliant, twelve-page evaluation of the manuscript. I also want to thank Jerry Waxler of the Memory Writers Network, for teleclasses he offered through the National Association of Memoir Writers on the craft of writing memoir, and for his thoughtful evaluation and editing of an early draft. Kathryn and Jerry’s suggestions guided me through my first major revision of the manuscript. In 2012 Kathryn read the manuscript again, and I am indebted to her for her clear thinking and incisive edits.

  When I took Professor Katy G.’s class “The Art of the Personal Essay” back in 2005 as an employee of a local university, she encouraged me to turn my writing on caregiving into the chapters of a book. Without her early faith in me I may never have considered the idea. I thank her for this early encouragement, and for reading and commenting on two drafts.

  Many thanks to Meg D., Carol H., Rachael S., Aileen F., Laura B. and Linda V. for reading an early version and offering suggestions, and to Meg. D., Joyce C., Suzanne K., Sara K., and Laura B. for reading and commenting on a later draft. Many thanks also to Judy E. for applying her stellar proofreading skills to the final draft.

  Thank you to Lucy Whitman, Marc Wortmann, Viki Kind, Sandra Stimson, Cindy Keith, Sharon K. Brothers, Nataly Rubinstein, and Joyce Simard for reviewing the advance copy and offering their suggestions.

  Through their work as life coaches, Meg D. and Jaya helped me to stay motivated to sit my bottom in a chair each day and write, even when the goal of a finished book seemed absolutely impossible.

  Another professional editor, Mickey P., evaluated an early draft, and I want to thank her for pointing out its flaws; over time I was able to appreciate her directness, and, I hope, to make the necessary revisions.

  Over several years I wrote many scenes in this book sitting at Ellen S.’s dining room table in her weekly writing group. I will always appreciate her gentle comments and editing suggestions, and her ongoing support. I also thank Irene Z. and her women’s writing group for providing another safe place to explore my feelings about caregiving and my family history.

  Barbara V., my boss for several years during the course of this story, always believed in “family first” and allowed me to take time off to attend to my mother’s medical emergencies. Barbara also supported my request to work from home to give me more time
to write. A former community college president, and an English major as an undergraduate, she believed in the importance of using writing to “bear witness” to injustice and suffering; social change, she would say, often begins with story.

  Lee R., a coworker who lost her own mother to Alzheimer’s disease, has always been generous with her empathy and emotional support.

  Susan Daffron and James Byrd of Logical Expressions, who have self-published twelve books, have guided me through the publishing process. I also thank the other members of their Author’s Circle for their inspiration and practical suggestions.

  Wayne G., a neighbor and fellow writer, promised several years ago to always ask me how my book was going. He followed through, year after year, always with an encouraging smile.

  Many thanks to all of Mom’s “angels” who have brightened her days—the staff in her facilities, plus Laura G., Suzanne K. and Terry M.

  My mother, Judy, has always been my most steadfast cheerleader. She told me years ago that she felt certain that I would end up writing a book of some sort. If she happened to be in it, she said, she asked only that I be “kind” to my “old Mom.” I hope that I’ve honored her wish.

  I thank my family—my dear husband Ben, son Andrew and daughter Morgan—for their patience with my new job of writing. I especially thank Morgan, who, at age 10, told me early on in the project that a book about taking care of Grammy was a good idea because “it will help other people in your situation know that they are not alone.”

  Index

  A

  AARP, 248

  Accera, 307

  accusations, see paranoia

  activities, 14, 29, 35, 38-39, 41, 60, 88, 103, 105, 134, 172, 199, 207-208, 212, 227-228, 245, 296

  of daily living (ADL), 13, 19, 20, 57-58, 313, 318-319

  see also exercise

  adult day care, 35, 57, 322

  Advisory Council on Alzheimer’s Research, Care, and Services, 324