Alzheimer’s and Memory Care Center of Excellence
115 Woodmont Blvd.
Nashville, TN 37205
Email: Use the “Contact Us” form on their website.
Phone: (615) 345-9575
Abe’s Garden is a nonprofit partner with the Vanderbilt Center for Quality Aging, at Vanderbilt University in Nashville, Tennessee, to provide a national best practices model of residential living and adult care programs for those affected by Alzheimer’s disease and dementia. The goal is to provide unparalleled respite care and residential living for individuals with Alzheimer’s or dementia and to become a center of knowledge for individuals with the disease. Abe’s Garden also seeks to improve the lives of affected families, and professional care partners.
225 North Michigan Avenue
17th Floor
Chicago, IL 60601-7633
Email: info@alz.org
24-hour/day hotline: (800) 272-3900
Phone: (312) 335-8700
The Alzheimer’s Association, or Alz.org, as it’s also known, is the big enchilada: the world’s leading nonprofit health organization for Alzheimer’s care, support, and research, working globally but also locally.
Alz.org is, in fact, the largest nonprofit funder of Alzheimer’s research, and has played a role in most of the last three decades’ advances. Since 1982, it has awarded more than $315 million in grants to more than 2,200 scientists. It publishes a scientific journal, Alzheimer’s & Dementia, and maintains an international society to keep researchers up to date. It also holds an annual international conference.
Alz.org is just as committed to enhancing care for individual patients and their caregivers. Its Alzheimer’s and Dementia Caregiver Center (http://www.alz.org/care/) provides comprehensive online resources and information. Alz.org also administers twenty thousand education programs and communicates caregiving information in fifteen languages. It helps patients find clinical trials through its service TrialMatch (http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp). It also provides search assistance for patients who wander, through its safety services, Comfort Zone and MedicAlert + Alzheimer’s Association Safe Return. www.alz.org.
National Institute on Aging
US Department of Health and Human Services
Building 31, Room 5C27
31 Center Drive, MSC 2292
Bethesda, MD 20892
Email: adear@nia.nih.gov
Phone: (800) 438-4380
A US government institution established in 1990 to “compile, archive, and disseminate information concerning Alzheimer’s disease” for health professionals, people with Alzheimer’s and their families, and the public. The ADEAR Center is a service of the National Institute on Aging, which conducts and supports research about health issues for older people, and is the primary federal agency for Alzheimer’s disease research. The ADEAR Center strives to be a current, comprehensive, unbiased source of information about Alzheimer’s disease.
This nonprofit drug research foundation, started by brothers Leonard and Ronald Lauder of the Estée Lauder family, is dedicated to rapidly accelerating the discovery and development of new drugs for Alzheimer’s disease. Nearly 100 percent of contributions go directly to Alzheimer’s drug research, which the ADDF funds through a venture philanthropy program. The ADDF has provided over $70 million to more than 450 drug research programs in a score of countries. The founding executive director and chief science officer of the ADDF is Howard Fillit, MD, a leading neuroscientist and geriatrician who specializes in the diagnosis and care of people with Alzheimer’s disease, including B. Smith, in his limited private practice.
322 Eighth Avenue, 7th Floor
New York, NY 10001
Email: Use the “Contact Us” form on their website.
Phone: (866) 232-8484 (Toll Free) or (646) 638-1542
The Alzheimer’s Foundation of America (AFA) strives “to provide optimal care and services to individuals confronting dementia, and to their caregivers and families—through member organizations dedicated to improving quality of life.” AFA unites more than 1,700 member organizations from coast to coast that are dedicated to meeting the educational, social, emotional, and practical needs of individuals with Alzheimer’s disease and related illnesses, and their caregivers and families. Under AFA’s umbrella, these organizations collaborate on education, resources, best practices, and advocacy.
The Cure Alzheimer’s Fund is a nonprofit organization founded in 2004 by three families who were frustrated by the slow pace of research. Leveraging their experience in venture capital and corporate start-ups, the founders (Henry McCance, Phyllis Rappaport, and Jacqui and Jeff Morby) came together to build a new venture-based Alzheimer’s research fund designed to dramatically accelerate research. Dr. Rudolph Tanzi is the fund’s Research Consortium chair.
The Initiative is a nonprofit organization underwritten by the Geoffrey Beene Foundation that is committed to providing catalyst funding to innovative new projects that advance awareness, diagnosis, and research on the early stages of Alzheimer’s disease.
To date, Alzheimer’s has inspired a mostly grassroots response in terms of books that address its many issues. Some of the best yet written are:
Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s, Meryl Comer; HarperCollins, 2014.
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss, 5th edition, Nancy L. Mace and Peter V. Rabins; Johns Hopkins University Press, 2011.
Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers, 2nd edition, Paula Spencer Scott; Eve-Birch Media, 2014.
Chicken Soup for the Soul—Living with Alzheimer’s and Other Dementias—101 Stories of Caregiving, Coping, and Compassion, Amy Newmark and Angela Timashenka Geiger; Chicken Soup for the Soul Publishing, 2014.
The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent, Barry Jacobs; Guilford Press, 2006.
Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, Nataly Rubinstein; Two Harbors Press, 2011.
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease, Joanne Koenig Coste; Mariner Books, Houghton Mifflin, 2004.
A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier, various authors; Demos Medical Publishing, 2006.
Creating Moments of Joy for the Person with Alzheimer’s or Dementia: A Journal for Caregivers, 4th edition, Jolene Brackey; Purdue University Press, 2008.
On Pluto: Inside the Mind of Alzheimer’s, Greg O’Brien; Codfish Press, 2014.
From the Alzheimer’s Association. Features the association logo and the message “reason to hope.” http://www.amazon.com/Alzheimers-Awareness-Purple-Silicone-Bracelet/dp/B0058E4G2Q/ref=sr_1_20?ie=UTF8&qid=1418660291&sr=8-20&keywords=Alzheimers.
A service of the Alzheimer’s Association. This online tool helps patients and family members create a customized Alzheimer’s Action Plan. https://www.Alzheimersnavigator.org/?_ga=1.52378607.735698444.1418131901.
A digital clock designed for people with early-stage Alzheimer’s or memory loss that displays the exact time in a large, bright, and clear display that can be easily seen from across the room. No abbreviations are used, so no memory is required. Sold by GeriGuard Solutions. http://www.geriguard.com/DayClox-p/dcx-800.htm.
Brochure put out by the National Institute on Aging in August 2010. Available at http://www.nia.nih.gov/Alzheimers/publication/home-safety-people-Alzheimers-disease/introduction.
The iTrack, designed by ElectroFlip, is a GPS tracking device for finding patients. The device uses cellular and GPS technology and is designed to be used in conjunction with cell towers and GPS satellite. According to the manufacturer, it is easier to use than a cell phone and all you need to operate it is a prepaid SIM card. The iTrack uses up to thirty-two satellite channels and cellular towers for accuracy within ten feet. It comes equipped with long-life dual lithium-ion batteries that last up to six days on a single charge. http://itrack.electroflip.com/index.html.
An application for iPhones or Android devices that prompts the patient with compromised memory with words or phrases that might be useful, based on daily routines. In development by the Technologies for Aging Gracefully Lab (TAGlab). http://taglab.utoronto.ca.
MemeXerciser will allow a person to wear “pervasive lifelogging systems” that have cameras, audio recorders, location trackers (much like a GPS system), and other technologies embedded in them. Without being prompted, these technologies will record experiences and events for the user. This helps the person with impaired memory be able to confidently recollect recent experiences, and reduces the burden on caregivers as well. http://www.cmu.edu/qolt/Foundry/documents/memexerciser_factsheet.pdf.
Even now, with B. in Stage Five, we find a lot to laugh about. I would say not a day goes by without us cracking up about something, whether it’s Bishop, our wacky Italian mastiff, or something we see on TV. Also, almost every night, we watch comedies—either movies or television shows. With B. living more and more in the moment, I think humor brings her intensified pleasure. When she’s laughing, she can’t be depressed; my own sense is that laughter, for a moment at least, obliterates the challenging reality of her life and makes her truly happy. Anyway, you can hardly lose for trying, right? So here, for the heck of it, is a grab bag list of B.’s and my favorite comedies:
Television: Modern Family—the “mockumentary” on ABC that chronicles three families living in Los Angeles and struggling to master the ever-more-complex business of parenting. B. laughs so hard at it she starts to weep.
Cedric the Entertainer in anything and everything he’s done, from Who Wants to Be a Millionaire on television to his many movie comedies, from Top Five and Planes: Fire and Rescue to Johnson Family Vacation and Big Momma’s House.
Movies: As Good as It Gets (1997), with Jack Nicholson, Helen Hunt, Greg Kinnear, and Cuba Gooding Jr. Grumpy and misanthropic Nicholson is drawn into the lives of his favorite waitress and a gay neighbor.
Clueless (1995)—Alicia Silverstone, Paul Rudd, and more: hilarious, sharp-edged look at Beverly Hills teenagers. Later a television show.
Dumb and Dumber (1994)—Jeff Daniels and Jim Carrey drive across the country to Aspen, Colorado, to return a briefcase whose contents they never question: in fact, the case contains ransom money. Okay, this one really is dumb. But like I said at the start: no matter how corny, tasteless, or silly, if it makes you laugh, go for it.
Harvey (1950)—And finally, a blast from the past: Jimmy Stewart as an alcoholic whose friend is a six-foot invisible rabbit. Redone as a television series in 1998.