Inside the Dementia Epidemic: A Daughter's Memoir (39 page)
Read Inside the Dementia Epidemic: A Daughter's Memoir Online
Authors: Martha Stettinius
Tags: #Alzheimers, #Biography & Autobiography, #Medical, #Nonfiction, #Personal Memoir, #Retail
For further information and support. These are some of my favorite books on dementia and caregiving, reports on dementia research and public policy, and organizations and Web sites supporting caregivers, but it is by no means an exhaustive list. For an annotated list of resources, please visit the Web site for this book,
www.insidedementia.com
.
BOOKS
Basting, Anne Davis.
Forget Memory: Creating Better Lives for People with Dementia
. Baltimore, MD: The Johns Hopkins University Press, 2009.
Bell, Virginia, and David Troxel. The
Best Friends Approach to Alzheimer’s Care.
Baltimore, MD: Health Professions Press, 2003.
Berman, Claire.
Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive
. New York: Owl Books, 2005.
Borrie, Cathie. The
Long Hello: The Other Side of Alzheimer’s
. Vancouver, B.C.: Nightwing Press, 2010.
Boss, Pauline, Ph.D.
Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief
. San Francisco, CA: Jossey-Bass, 2011.
Bryden, Christine.
Dancing with Dementia: My Story of Living Positively with Dementia.
Philadelphia: Jessica Kingsley Publishers, 2005.
Caposella, Cappy, and Sheila Warnock.
Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill.
New York: Fireside, 2004.
Cohen, Elizabeth. The
House on Beartown Road: A Memoir of Learning and Forgetting.
New York: Random House, 2003.
Coste, Joanne Koenig.
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease.
New York: First Mariner Books, 2003.
DeBaggio, Thomas.
Losing My Mind: An Intimate Look at Life with Alzheimer’s.
New York: The Free Press, 2002.
Geist, Mary Ellen.
Measure of the Heart: A Father’s Alzheimer’s, a Daughter’s Return.
New York: Springboard Press, 2008.
Genova, Lisa.
Still Alice
. New York: Pocket Books, 2009.
Gillies, Andrea.
Keeper: One House, Three Generations, and a Journey into Alzheimer’s
. New York: Broadway Paperbacks, 2009.
Gleckman, Howard.
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.
Goldman, Connie. The
Gifts of Caregiving: Stories of Hardship, Hope and Healing
. Minneapolis, MN: Fairview Press, 2002.
Greenblat, Cathy Stein.
Alive with Alzheimer’s
. Chicago: The University of Chicago Press, 2004.
—————.
Love, Loss and Laughter: Seeing Alzheimer’s Differently
. Guilford, CT: Lyons Press, 2012.
Gross, Jane.
A Bittersweet Season: Caring for Our Aging Parents—and Ourselves
. New York: Alfred A. Knopf, 2011.
Hadas, Rachel.
Strange Relation: A Memoir of Marriage, Dementia, and Poetry
. Philadelphia, PA: Paul Dry Books, 2011.
Jacobs, Barry J., Psy.D. The
Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent.
New York: Guilford Press, 2006.
Kane, Robert L., MD. The
Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One.
New York: Penguin Group, 2011.
Kane, Robert L., MD, and Joan C. West.
It Shouldn’t Be This Way: The Failure of Long-Term Care.
Nashville, TN: Vanderbilt University Press, 2005.
Keith, Cindy.
Love, Laughter and Mayhem
:
Caregiver Survival Manual for Living with A Person with Dementia
. Port Charlotte, FL: BookLocker, 2010.
Kessler, Lauren.
Dancing with Rose: Finding Life in the Land of Alzheimer’s
. New York: Penguin Group, 2007.
Kind, Viki. The
Caregiver’s Path to Compassionate Decision-Making: Making Choices for Those Who Can’t
. Austin, TX: Greenleaf Book Group, 2010.
LaPlante, Alice.
Turn of Mind.
New York: Atlantic Monthly Press, 2011.
Levine, Judith.
Do You Remember Me? A Father, a Daughter, and a Search for the Self.
New York: Free Press, 2004.
Lokvig, Jytte.
Alzheimer’s A to Z: Secrets of Successful Caregiving
. Santa Fe, NM: Endless Circle Press, 2003.
Lokvig, Jytte, and John Becker.
Alzheimer’s A to Z: A Quick-Reference Guide.
Oakland, CA: New Harbinger Publications, 2004.
Loverde, Joy. The
Complete Eldercare Planner, Revised and Updated Edition: Where to Start, Which Questions to Ask, and How to Find Help.
New York: Three Rivers Press, 2009.
Mace, Nancy L., and Peter V. Rabins. The
36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life
. New York: Warner Books, 2006.
Marriott, Hugh. The
Selfish Pig’s Guide to Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone
. London: Piatkus, 2003.
McCullough, Dennis.
My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones
. New York: HarperCollins, 2008.
McGowin, Diana Friel.
Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s
. New York: Dell Publishing, 1994.
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
Alzheimer’s Association
www.alz.org
phone: 800-272-3900
www.caregiving.com
phone: 773-343-6341
Caring From a Distance
www.cfad.org
phone: 202-895-9465
Centers for Medicare and Medicaid Services
Children of Aging Parents
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
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
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
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.