If you or a loved one has been diagnosed with Alzheimer’s disease, empower yourself by learning as much as you can about the disease to prepare yourself and/or the person with the disease for what will likely be a long and arduous journey.
The Alzheimer’s Association’s website — www.alz.org — is full of useful information. It explains just about everything you need to know about Alzheimer’s disease and dementia. The toll-free telephone helpline, 1-800-272-3900, is available 24 hours a day, seven days a week for those who do not have access to the Internet or who prefer talking to a human voice.
There are also Alzheimer’s Association offices in each county. Here is their contact information:
• O‘ahu: (808) 591-2771, 1050 Ala Moana Blvd., Ste. 2610 (Ward Warehouse);
• Hawai‘i island: (808) 981-2111, 1055 Kino‘ole St., Ste. 103;
• Kaua‘i: (808) 245-3200, 4303 Rice St., Ste. C2; and
• Maui (also serves Moloka‘i and Läna‘i): (808) 242-8636, 270 Ho‘okahi St., Ste. 311.
Older adults can also seek support services from a number of organizations in Hawai‘i, including:
• Project Dana: (808) 945-3736; and
• Catholic Charities: O‘ahu, (808) 521-4357; Hawai‘i island, (808) 935-4673; Maui, (808) 873-4673; and Kaua‘i, (808) 241-4673.
Another good resource is the Senior Information and Assistance Handbook, which is published every other year as a public service by the City and County of Honolulu’s Elderly Affairs Division and American Savings Bank. The handbook, which is free, contains information about a wide range of services and programs related to eldercare in Hawai‘i. The next updated edition will be published in 2017.
In addition to these resources, there are classes, support groups, seminars, workshops and fairs that address topics of interest to older adults and their caregivers. Most are sponsored by organizations such as AARP, health care organizations, educational programs or nonprofits and are usually announced early enough so that you can save the date.
The growing number of people diagnosed with dementia and Alzheimer’s disease has prompted more people to share their personal experiences and expertise with those just learning about the disease. Most of these books can be borrowed from your public library, purchased at a bookstore or ordered online.
“The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Other Dementias, and Memory Loss” by Nancy L. Mace and Peter V. Rabins, M.D., remains the “classic” book for non-experts. Originally published in 1981, it continues to be a valuable resource, with related editions. “The 36-Hour Day” is oftentimes the first book people read when a loved one is diagnosed with Alzheimer’s disease.
“Jan’s Story” is another good book, especially if a loved one is dealing with early-onset Alzheimer’s. It was written by CBS News correspondent Barry Petersen about his wife, Jan Chorlton Petersen, a fellow journalist at one time, who developed symptoms of Alzheimer’s disease while still in her 40s. She was not officially diagnosed with Alzheimer’s until age 55. Petersen describes Jan’s cognitive decline due to early-onset Alzheimer’s and his attempts to care for her. Eventually, she required care in an assisted living facility. Jan Petersen died in May 2013 at the age of 63. The book also addresses the difficult choices that are often made when a loved one develops dementia.
Here are additional books recommended by the Alzheimer’s Association.
“A Dignified Life: The Best Friends Approach to Alzheimer’s Care, A Guide for Family Caregivers” (2002) by Virginia Bell, M.S.W., and David Troxel. This book describes the Best FriendsTM approach to Alzheimer’s care, using caring and heartfelt responses to daily situations, thus bringing dignity to the lives of people with dementia and their caregivers.
“A Personal Guide to Living with Progressive Memory Loss” (2007) by Sandy Burgener and Prudence Twigg. Useful advice for people with early-stage dementia and insight for their family and friends. Real-life examples of people in the same situations show both positive and negative ways of dealing with possible problems and challenges.
“Alzheimer’s: A Caregiver’s Guide and Sourcebook” (2001) by Howard Gruetzner. This critically acclaimed guide leads you through the realities of caring for a loved one with Alzheimer’s. A full overview of the symptoms, stages, treatments and support services, offering caregivers helpful, hopeful advice for getting through difficult challenges and coping with stress, grief and depression to help them create loving and more comfortable relationships.
“Alzheimer’s from the Inside Out” (2007) by Richard Taylor, Ph.D. Diagnosed at age 58, psychologist Richard Taylor tells the story of his first five years with Alzheimer’s disease in vivid, gripping and sometimes humorous ways, revealing an existence most of us can only imagine. With sometimes searing honesty, he shares thoughts, fears, frustrations and questions, giving readers the rare ability to travel on his unpredictable journey.
“Between Two Worlds: Special Moments of Alzheimer’s and Dementia” (1991) by Ellen P. Young. This book is about a family’s experience with Alzheimer’s disease. It is about love and pain and about taking a peek behind that darkest cloud and finding that gentle humor is often our greatest ally.
“Changes in Decision-Making Capacity in Older Adults: Assessment and Intervention” (2007) by Sara Honn Qualls, Ph.D., and Michael A. Smyer. International contributors familiarize you with the legal and social contexts for decision-making in potentially impaired individuals, giving a unique framework of the legal, social and psychological approaches to assessing the ability of older adults to make decisions.
“Creating Environments of Support: A Handbook for Dementia Responsive Design” (2010) by Sarah Campernel and William Brummett, William Brummett Architects. This guide is intended to help shape a care setting for someone living with Alzheimer’s disease. Architectural and design elements can create a therapeutic environment that actually enhances the life and care of someone with dementia.
“Keeping Busy: A Handbook of Activities for Persons with Dementia” (1995) by James Dowling. Describes a variety of activities designed to bring meaning and enjoyment to the lives of people with dementia. Activities are organized in general categories such as music, exercise, horticulture, pets, humor and social events.
“Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s” (1994) by Diana Friel McGowin. At age 45, McGowin began experiencing memory lapses and disorientation. She relates her story with the early stage of the disease, its impact on her relationships and the need for services that led her to become an advocate and launch one of the first support groups for people with dementia.
“Measure of the Heart: A Father’s Alzheimer’s, A Daughter’s Return” (2008) by Mary Ellen Geist. The author refers to herself as the “designated daughter” — the one who returned home to help and support her mother in loving and caring for Geist’s father, Woody, after he was diagnosed with Alzheimer’s disease. With the objectivity of a reporter’s eye and the compassion of a caregiver’s heart, Geist weaves personal experience and diligent research in sharing her family’s story of life with dementia.
“Mom, Are You There? Finding a Path to Peace Through Alzheimer’s” (2005) by Kathleen A. Negri. Insights and lessons that can aid caregivers in embracing the person with dementia in positive, healthy ways and in developing self-understanding.
“The Best Friends Approach to Alzheimer’s Care” (2003) by Virginia Bell, M.S.W., and David Troxel, M.P.H. Effective dementia care utilizes the same qualities as a good friendship: mutual respect, affection, understanding and support. Use them when sharing time, feelings, memories and new experiences with someone with dementia. This approach gives you new ways to solve problems, encourage positive behavior and improve communication.
“The Best Friends Book of Alzheimer’s Activities, Volume Two” (2008) by Virginia Bell, M.S.W.; David Troxel, M.P.H.; Robin Hamon, M.S.W.; and Tonya Cox, M.S.W. New activities for individuals with dementia, including a new focus on diversity and multiculturalism. Also featured are topics of interest to Baby Boomers, such as the Internet, advocacy and community service.
“Through the Wilderness of Alzheimer’s: A Guide in Two Voices” (1999) by Robert and Anne Simpson. A loving couple’s firsthand story about their journey with Robert’s Alzheimer’s disease, told from each of their perspectives.
“Still Alice” (2014), a feature film based on Lisa Genova’s bestselling novel about Dr. Alice Howland (Julianne Moore), a renowned linguistics professor at Columbia University, who must confront the devastating diagnosis of early-onset Alzheimer’s disease. The once-vibrant woman struggles to hang on to her sense of self for as long as possible while her three grown children watch helplessly as their mother disappears more and more with each passing day. Available in Blu-ray and DVD.