Inside the Dementia Epidemic: A Daughter's Memoir
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Miller, Sue. The Story of My Father: A Memoir. New York: Random House, 2003.
Mintz, Suzanne Geffen. A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard. Herndon, VA: Capital Books, 2007.
Power, G. Allen. Dementia Beyond Drugs: Changing the Culture of Care. Baltimore, MD: Health Professions Press, 2010.
Radin, Lisa, and Gary Radin, eds. What If It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia. Amherst, NY: Prometheus Books, 2008.
Rubinstein, Nataly. Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide. Minneapolis, MN: Two Harbors Press, 2011.
Sheehy, Gail. Passages in Caregiving: Turning Chaos into Confidence. New York: William Morrow, 2010.
Shulman, Alix Kates. To Love What Is: A Marriage Transformed. New York: Farrar, Straus and Giroux, 2008.
Simard, Joyce. The End-of-Life Namaste Care Program for People with Dementia. Baltimore, MD: Health Professions Press, 2007.
Span, Paula. When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions. New York: Springboard Press, 2009.
Taylor, Richard. Alzheimer’s from the Inside Out. Baltimore, MD: Health Professions Press, 2007.
Thomas, William H. Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home: The Eden Alternative in Action. St. Louis, MO: Vanderwyk & Burnham, 1996.
—————. What Are Old People For?: How Elders Will Save the World. St. Louis, MO: Vanderwyk & Burnham, 2007.
Thorndike, John. The Last of His Mind: A Year in the Shadow of Alzheimer’s. Athens, OH: Swallow Press, 2009.
Whitman, Lucy, ed. Telling Tales About Dementia: Experiences of Caring. London: Jessica Kingsley Publishers, 2009.
Zeisel, John. I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s. New York: Penguin Group, 2009.
RESEARCH REPORTS and POLICY RECOMMENDATIONS
AARP Public Policy Institute. Valuing the Invaluable: 2011 Update: The Growing Contributions and Costs of Family Caregiving, http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf.
Alzheimer’s Association. Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address. November, 2011, www.alz.org/documents_custom/napareport.pdf.
—————. 2012 Alzheimer’s Disease Facts and Figures. http://www.alz.org/downloads/Facts_Figures_2012.pdf.
Alzheimer’s Foundation of America. No Time to Waste: Recommendations for an Integrated National Plan to Overcome Alzheimer’s Disease. October 2011. http://aspe.hhs.gov/daltcp/napa/cmtach17.pdf.
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.
Working Mother Research Institute, Women and Alzheimer’s Disease: The Caregiver’s Crisis, June 2012, http://www.wmmsurveys.com/ALZ_report.pdf.
ORGANIZATIONS and WEB SITES
211 Information and Referral Search
www.211.org
Alzheimer’s Association
www.alz.org phone: 800-272-3900
Caregiving.com
www.caregiving.com phone: 773-343-6341
Caring.com
www.caring.com
Caring From a Distance
www.cfad.org phone: 202-895-9465
Centers for Medicare and Medicaid Services
www.cms.gov
Children of Aging Parents
www.caps4caregivers.org
The Eden Alternative®
www.edenalt.org phone: 585-461-3951
Eden at Home®
www.edenalt.org/eden-at-home phone: 585-461-3951
Eldercare Locator
www.eldercare.gov phone: 800-677-1116
Engaging Alzheimer’s
www.engagingalzheimers.com phone: 914- 844-6254
Family Caregiver Alliance
www.caregiver.org phone: 800-445-8106
The Green House Project®
http://thegreenhouseproject.org phone: 703-647-2311
Lotsa Helping Hands
www.lotsahelpinghands.com
Meals on Wheels
www.mowaa.org phone: 703-548-5558
National Academy of Elder Law Attorneys
www.naela.org phone: 703-942-5711
National Adult Day Services Association
www.nadsa.org phone: 877-745-1440
National Alliance for Caregiving
www.caregiving.org
National Association of Area Agencies on Aging
www.n4a.org phone: 202-872-0888
National Association of Professional Geriatric Care Managers
www.caremanager.org phone: 520-881-8008s
National Board for Certified Counselors
www.nbcc.org phone: 336-547-0607
National Center for Assisted Living
www.ncal.org phone: 202-842-4444
National Center on Senior Transportation
http://seniortransportation.easterseals.com phone: 866-528-NCST
National Council of Certified Dementia Practitioners
www.nccdp.org phone (toll-free): 877-729-5191
National Family Caregivers Association
www.nfcacares.org phone: 301-942-6430
National Hospice and Palliative Care Organization
www.nhpco.org phone: 703-837-1500
Notes
EPIGRAPH
Christine Bryden, Dancing with Dementia: My Story of Living Positively with Dementia (Philadelphia: Jessica Kingsley Publishers, 2005), 150.
PREFACE
1 One in eight people: Alzheimer’s Association, “2012 Alzheimer’s Disease Facts and Figures,” Alzheimer’s & Dementia, Volume 8, Issue 2, p. 14. http://www.alz.org/downloads/facts_figures_2012.pdf. © 2012 Alzheimer’s Association. All rights reserved.
1 In the United States in 2011: Alzheimer’s Association, “2012 Alzheimer’s Disease Facts and Figures,” p. 31.
2 In the United States in 2012: Ibid., p. 51.
2 William Thies, Ph.D., the Alzheimer’s: Alzheimer’s Association, “International Survey Reveals Attitudes Towards Alzheimer’s Diagnosis and Treatment,” Alzheimer’s Association Finger Lakes Region Newsletter, Fall 2011, 2, http://www.alz.org/rochesterny/documents/ALZ_Fall011News3.pdf. © 2012 Alzheimer’s Association. All rights reserved.
A NEW BEGINNING
17 The Alzheimer’s Association describes: Alzheimer’s Association, “Seven Stages of Alzheimer’s,” 2011, http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp. © 2012 Alzheimer’s Association. All rights reserved.
20 In May of 2011 an international: Lab Tests Online, “Biomarkers Incorporated into Alzheimer’s Disease Diagnostic Criteria,” July 5, 2011, http://labtestsonline.org/news/biomarkers-incorporated-into-alzheimer-s-disease-diagnostic-criteria/.
OUR HISTORY
51 The weight crept back on: Kathleen Doheny, “Belly Fat in Midlife, Dementia Later? Study Shows Getting a Big Belly in Midlife Ups Risk of Dementia Later in Life,” WebMD Health News, March 26, 2008, http://www.webmd.com/alzheimers/news/20080326/belly-fat-in-midlife-dementia-later.
51 I will learn later that weight loss: University of South Florida Health, “Unexplained Late-life Weight Loss May Be Early Predictor Of Alzheimer’s Disease,” ScienceDaily, Jun. 11, 2007, http://www.sciencedaily.com/releases/2007/06/070611092048.htm.
52 Although this habit may have been: The Murray Alzheimer Research and Education Program, University of Waterloo, “Tips and Strategies: An Inspirational Guide for People Like Us with Early-Stage Memory Loss,” 2008, http://marep.uwaterloo.ca/products/BUFU/93711_tips.strategies.pdf.
SMALL INDIGNITIES
83 According to Forbes.com: Dan Ackman, “Retirement Doomsday,” Forbes.com, May 4, 2005, http://www.forbes.com/2005/05/04/cx_da_0504topnews.html.
ALONE IN A CROWD
105 I read in the New York Times: Kolata, “Old but Not Frail: A Matter of Heart and Head,” New York Times, October 5, 2006, sec. A.
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br /> LIVING GRIEF
186 I leaf through a magazine: Lauren Kessler, “The Life in There: years after her mother died of Alzheimer’s, Lauren Kessler was still terrified of the disease. And so she decided to meet her fear head-on—by taking an entry-level job at an Alzheimer’s facility. First came the shock. Then, amazingly, the awe. What she learned will change the way you think about the diagnosis we all dread.” O, The Oprah Magazine, June 2007: 187+.
RECKONING
211 In 2007 in New York State: Community Health Advocates, “Section 5A: Medicaid in NY,” June 2007, http://www.communityhealthadvocates.org/advocates-guide/medicaid-managed-care/medicaid-in-new-york#howspenddownworks.
211 In 2011 the national average: MetLife Mature Market Institute, “Market Survey of Long-Term Care Costs: The 2011 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs,” October 2011, 7-9, http://www.metlife.com/assets/cao/mmi/publications/studies/2011/mmi-market-survey-nursing-home-assisted-living-adult-day-services-costs.pdf
SHARP AND SWEET
221 Her departure reminds me again: Lauren Kessler, Dancing with Rose: Finding Life in the Land of Alzheimer’s (New York: Viking Penguin, 2007), 256.
FINANCIAL DISASTER
225 She will soon qualify for Medicaid: Evelyn Frank Legal Resources Program of Selfhelp Community Services, Inc., “Medicaid Spend-Down,” New York Health Access, June 1, 2009, http://wnylc.com/health/entry/46/.
WHAT IF’S
229 A few weeks later I read: Jane E. Brody, “Putting Muscle Behind End-of-Life Issues,” New York Times, Feb. 23, 2009, D7.
HONESTY
238 In her book Forget Memory: Anne Davis Basting, Forget Memory: Creating Better Lives for People with Dementia (Baltimore: The Johns Hopkins University Press, 2009), 28. Reprinted with permission of The Johns Hopkins University Press.
239 In Learning to Speak Alzheimer’s: Joanne Koenig Coste, Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease (New York: First Mariner Books, 2004), 77.
239 John Zeisel writes in his book: John Zeisel, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s (New York: Avery Trade, 2009), 157-8.
ANOTHER SEARCH FOR HOME
244 Its fundamental tenet is that: William H. Thomas, M.D., Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home (Acton, MA: VanderWyk & Burnham, 1996), 7-23. Reprinted with permission of VanderWyk & Burnham, an imprint of Quick Publishing, LC, 888-PUBLISH, fax 314-993-4485, email quickpublishing@sbcglobal.net.
246 According to Dr. Thomas, its founder: Thomas, quoted in Camille Peri, “Talking with Bill Thomas: Reimagining Nursing Homes: The doctor who wants to revolutionize nursing homes talks about why old age should be a time of growth, not decline, and how we can make that happen,” Caring.com, July 18, 2008, http://www.caring.com/interviews/interview-with-bill-thomas-about-pulling-the-plug-on-nursing-homes. ©Copyright 2008-2012, Caring.com. All Rights Reserved.
246 Their website explains that: THE GREEN HOUSE® Project, “Learn About Us,” http://thegreenhouseproject.org/about-us/.
247 To change the culture of elder care: NCB Capital Impact, “THE GREEN HOUSE® Frequently Asked Questions,” http://www.ncbcapitalimpact.org/defaultaspx?id=508#GHcul turechange.
247 According to the blogstream Changing Aging: Kavan Peterson, “The Green House Project Featured in USA Today, Plus New Consumer Toolkit,” ChangingAging Blogstream, April 1, 2011, http://changingaging.org/blog/2011/04/01/the-green-house-project-featured-in-usa-today-plus-new-consumer-toolkit/.
247 Instead of working all day: St. John’s Home, “THE GREEN HOUSE® Project: St. John’s Green House® Project: Transforming Elder Services in New York,” 2011, http://www.stjohnshome.com/green-house-project.
247 According to the Green House Project: THE GREEN HOUSE® Project, “Consumer Tool Kit,” 16.
248 With the financial support: THE GREEN HOUSE® Project, “RWJF Announce $10 Million Expand Green House Access to Low-Income Elders,” Sept. 8, 2011, http://thegreenhouseproject.com/rwjf-announce-10-million-expand-green-house-access-to-low-income-elders/.
248 By September 2011 there will be: THE GREEN HOUSE® Project, “Evaluating THE GREEN HOUSE® Model,” p.1, http://thegreenhouseproject.org/wp-content/uploads/2011/10/green_house_research-1-pager-with-map_September-2011.pdf.
248 According to the developer of one: St. John’s Home.
248 Care can be paid for by: THE GREEN HOUSE® Project, “Consumer Tool Kit,” p.3, http://thegreenhouseproject.org/wp-content/uploads/2011/04/The-Green-House-Project_Consumer-Toolkit_rev3.pdf.
248 An average of fifty percent: Kavan Peterson, “Live Grow Thrive: Green House Model Promotes Growth,” ChangingAging Blogstream, Jan. 11, 2011, http://changingaging.org/blog/2011/0111/live-grow-thrive-green-house-model-promotes-growth/.
248 The AARP calls the project: THE GREEN HOUSE® Project, “RWJF Announce $10 Million Expand Green House Access to Low-Income Elders.”
249 In his book What Are Old People For?: William H. Thomas, M.D., What Are Old People For? How Elders Will Save the World (Acton, MA: VanderWyk & Burnham, 2004), 234-235.
249 Doctors, social workers, and physical: Peterson, “Live Grow Thrive.”
FOUR KINDS OF PAIN
254 I learn later that when: Jean Carper, 100 Simple Things You Can Do to Prevent Alzheimer’s and Age-Related Memory Loss (New York: Little, Brown and Company, 2010), 26-28.
REBOUND
256 In Barbara Ehrenreich’s book Bright-Sided: Barbara Ehrenreich, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America (New York: Metropolitan Books, 2009), 9-44.
SMALL PLEASURES
264 Dr. G. Allen Power, author: G. Allen Power, M.D., Plenary Presentation. “Dementia Beyond Drugs: Changing the Culture of Care,” Ithaca College Gerontology Institute 2010 Annual Conference: Dignity, Compassion, and Choice: New Approaches to Geriatric Care, Campus Center, Ithaca College, Ithaca, New York, Sept. 30, 2010.
IS IT ALZHEIMER’S, OR NOT?
274 According to the collection of essays: John. Q. Trojanowski, M.D., Ph.D., Foreword, in What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia, Lisa Radin and Gary Radin, eds. (Amherst, New York: Prometheus Books, 2008), 15.
275 In one of the essays in: Murray Grossman, “What Is Frontotemporal Dementia? A Clinical Perspective,” in Radin and Radin, 46.
276 As Katherine P. Rankin points: Katherine P. Rankin, “Altered Relationships: Adapting to Emotions and Behavior,” in Radin and Radin, 219.
276 On the other hand, when I read: Rachel Hadas, Strange Relation: A Memoir of Marriage, Dementia, and Poetry (Philadelphia: Paul Dry Books, 2011), xi,119.
AFTERWORD
283 Indeed, I’d follow the advice of: Nataly Rubinstein, Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Minneapolis, MN: Two Harbors Press, 2011), 56-63.
APPENDIX A: IS THERE A TEST TO DIAGNOSE ALZHEIMER’S DISEASE?
289 According to Dr. Frank Longo: Frank Longo, MD, PhD, “The Coming Epidemic of Dementia and How It Can Be Diagnosed, Treated, and Prevented,” Stanford School of Medicine, Stanford, CA, address, May 2012, http://scopeblog.stanford.edu/2012/05/31/stanford-neuroscientist-discusses-the-coming-dementia-epidemic/.
290 The Alzheimer’s Association reserves: “Alzheimer’s Association Statement on Florbetapir PET Amyloid Imaging,” Alzheimer News, Jan. 21, 2011, http://www.alz.org/news_and_events_pet_amyloid_imaging.asp ©2012 Alzheimer’s Association, all rights reserved.
290 A spinal fluid test has been: Jenny Marder, “Spinal Fluid Test a New Tool for Diagnosing Alzheimer’s Disease,” PBS Newshour, August 10, 2010, http://www.pbs.org/newshour/rundown/2010/08/doctors-may-be-able-to.html.
290 Many doctors and researchers: Gina Kolata, “In Spinal Fluid Test, an Early Warning on Alzheimer’s,” New York Times, August 8, 2010, http://www.nytimes.com/2010/08/10/health/research/
10spinal.html.
290 In May of 2011, an international: Lab Tests Online, “Biomarkers Incorporated into Alzheimer’s Disease Diagnostic Criteria,” July 5, 2011, http://labtestsonline.org/news/biomarkers-incorporated-into-alzheimer-s-disease-diagnostic-criteria/.
291 That’s a tall order: Alzheimer’s Association, “Frequently Asked Questions: Publication of New Criteria and Guidelines for Alzheimer’s Disease Diagnosis,” April 2011, 1-3, http://www.alz.org/documents_custom/Alz_Diag_Criteria_FAQ.pdf. ©2012 Alzheimer’s Association, all rights reserved.
291 Dr. Jack Diamond, the scientific: Jack Diamond, M.D., quoted in Nick Krewen, “Alzheimer’s Cases Predicted to Rise 1000 Percent: What’s Being Done to Find a Cure,” www.samaritanmag.com, October 12, 2011. http://samaritanmag.com/859/alzheimers-cases-predicted-rise-1000-percent-whats-being-done-find-cure.
292 The international workgroup: Lab Tests Online, “Biomarkers Incorporated into Alzheimer’s Disease Diagnostic Criteria,” July 5, 2011, http://labtestsonline.org/news/biomarkers-incorporated-into-alzheimer-s-disease-diagnostic-criteria/.
292 As Diamond points out: Diamond, quoted in Krewen.
APPENDIX B: MEDICATIONS APPROVED TO RELIEVE SYMPTOMS OF ALZHEIMER’S DISEASE
293 Two types of prescription medications: National Institutes of Health, National Institute on Aging, “Alzheimer’s Disease Medications Fact Sheet,” April 9, 2012, http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-medications-fact-sheet.
293 They include Aricept: Dementia SOS: Colorado’s Dementia News and Resource Center, “The Medications for Alzheimer’s,” Jan. 17, 2012, http://www.coloradodementia.org/tag/razadyne.
293 A two-and-a-half-year: Alireza Atir, MD, PhD; Lynn W. Shaughnessy, BS; Joseph J. Locasio, PhD; John H. Growdon, MD, “Long-term Course and Effectiveness of Combination Therapy in Alzheimer Disease,” Alzheimer’s Disease and Related Disorders, 22(3): 209-211, July/September 2008, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718545/
294 A study published in the Journal: Pierre N. Tariot, MD; Martin R. Farlow, MD; George T. Grossberg, MD; Stephen M. Graham, PhD; Scott McDonald, PhD; Ivan Gergel, MD; for the Memantine Study Group, “Memantine Treatment in Patients with Moderate to Severe Alzheimer Disease Already Receiving Donepezil,” Journal of the American Medical Association, 2004; 291(3): 317-324. www.jamanetwork.com/article.aspx?articleid=198033.