Alzheimer’s Association • www.alz.org • 800-272-3900
The Alzheimer’s Association is a national organization represented in local communities throughout the U.S. It offers a broad range of resources and support.
Alzheimer’s Foundation • www.alfdn.org • 866-232-8484
AFA was created to be a resource for families in their time of need. AFA’s national toll-free hotline is staffed by licensed social workers and provides support and assistance to callers, as well as connecting them with resources in their area.
The Association for Frontotemporal Degeneration (AFTD) • www.theaftd.org • 866-507-7222
AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure. They work to promote and fund research toward diagnosis, treatment, and a cure; stimulate greater public awareness and understanding; provide information and support to those directly impacted; promote and provide education for health care professionals; and advocate for research and appropriate, affordable services.
Lewy Body Dementia Association (LBDA) • www.lbda.org • 800-539-9767
Those living with Lewy body dementia, care partners, and others can connect to the licensed professionals with LBDA Support Services through the LBDA Lewy Line or email.
Support and Services
Family Caregiver Alliance (FCA) provides nationwide support to families and friends who care for adult loved ones with chronic health conditions. Find resources in your area and get connected to FCA’s online support groups and education workshops. FCA is also the California Caregiver Resource Center for the San Francisco Bay Area. Family Caregiver Alliance has a number of archived webinars. 800-445-8106
Area Agencies on Aging (AAA) is a nationwide network of local agencies serving older adults and people with disabilities. The local agencies can be accessed through ElderCare Locator, a public service of the U.S. Administration on Aging connecting you to services for older adults and their families. 800-677-1116
Penn Memory Center (Philadelphia, PA) offers classes, support groups, and information on Alzheimer’s disease and brain aging–related topics. Some examples of their offerings for caregivers are Virtual Caregiving Forums and Caregiver Class, as well as a Time Out Respite Care program with the participation of college students in the Philadelphia area. Other programs are intended for both caregivers and their loved ones, including Memory Café, dance, cognitive fitness, and comedy. Many programs are online and open to the general public.
The Massachusetts Alzheimer’s Disease Research Centerlists a wealth of resources for patients and caregivers, including caregiver support groups and educational forums. Kids Korner offers a unique selection of guides and books to help young readers understand memory loss.
The UCSF Memory and Aging Center offers information and access to a variety of support groups, including links to groups outside of the San Francisco Bay Area.
The U.S. Department of Veterans Affairs offers a caregiver video series with tips on improving communications, addressing safety risks, and intimacy in dementia.
Updates and Learning
The National Institutes of Health/National Institute on Aging website on Alzheimer’s Disease & Related Dementias is a trusted resource for learning about the disease and getting news, tips, and resources for caregivers and health care professionals. Spanish language content is available.
Alzheimers.gov is an information and resources website for both families and professionals. You can download publications, find clinical trials, and get guidance on where to find help locally.
Making Sense of Alzheimer’s features stories and ideas that tackle the changing understanding of what Alzheimer’s disease is and how we try to make sense of it in our own lives. It is produced by the Neurodegenerative Disease Ethics and Policy Program at the University of Pennsylvania and the Outreach, Recruitment and Education Core of the National Institute on Aging-designated Alzheimer’s Disease Center at Penn.
Being Patient is an editorially independent news and community platform founded by Deborah Kahn “to provide patients, caregivers, and carriers of the Alzheimer’s gene the tools they need to navigate the disease and elevate the patient’s voice into essential conversations on healthcare and research.”
Videos in multiple languages are available from the UCLA Alzheimer’s and Dementia Care Program.
Alzheimer’s Los Angeles Tip Sheets cover a broad range of topics—from anxiety, communication, and driving, to repeating, sundowning, and toileting—in multiple languages.
AARP Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family by Barry J. Jacobs and Julia L. Mayer (2016) is a rich resource for caregivers. Through a collection of more than 150 meditations and accompanying anecdotes, drawn from the authors’ personal and clinical experience, the book guides the caregiver on a journey of inner reflection and renewal. Many caregivers may see themselves in the pages as key themes such as anger, anxiety, and guilt are woven into the stories. Also discussed are insights on and techniques for stress management and mindfulness.
Alzheimer’s Early Stages: First Steps for Family, Friends, and Caregivers by Daniel Kuhn (2013, third edition) offers new research findings, treatment approaches, and information on the three key areas of Alzheimer’s disease: medical aspects, day-to-day care, and care for the caregiver. Daniel Kuhn seeks to replace fear with knowledge. With information on the progression of the disease, potential non-drug means of treatment, the changing world of the diagnosed individual, legal and financial planning, and maintaining physical and mental health for the caregiver, the book provides detailed guidance and advice while leaving room for adapting to the individual situation.
The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It by Jason Karlawish combines thoughtful research into the history of the disease and the author’s firsthand experience as a clinician to reflect on where we are today and a path to a more acceptable future.
A Dignified Life: The Best Friends Approach to Alzheimer’s Care, A Guide for Family Caregivers by Virginia Bell and David Troxel suggests a different approach to caring—by treating the person like a best friend and working from their strengths, not their weaknesses.
A Caregiver’s Guide to Lewy Body Dementia by Helen Buell Whitworth, MS, BSN, and James Whitworth received a 2012 Caregiver Friendly Award from Today’s Caregiver Magazine and is a resource for caregivers, family, and friends of people with the disease.
What If It’s Not Alzheimer’s?: A Caregiver’s Guide To Dementia (2014) by Gary Radin and Lisa Radin is the first comprehensive guide dealing with frontotemporal degeneration (FTD), one of the largest groups of non-Alzheimer’s dementias.
The Forgetting: Alzheimer’s: Portrait of an Epidemic by David Shenk is a masterful amalgam of journalism and science, combining factual accounts of the disease with analysis of its social and cultural impact on those afflicted and their families. Well researched and well written, it is a likely favorite for all affected by the disease.
The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent by Barry J. Jacobs offers insights through an account of two sisters and their ailing mother. The author urges readers to be honest about the level of commitment they are able to make and emphasizes the need for clear communication within the family.
On Vanishing: Mortality, Dementia, and What It Means to Disappear by Lynn Casteel Harper is a beautifully written, insightful, and compassionate exploration of the loss, stigma, and suffering of dementia, while reminding us to celebrate and honor the human spirit that endures.
A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s by Ann Davidson is a loving memoir of the author’s caregiving experience as her husband, Julian, a Stanford Medical School professor, progresses through the disease. Her earlier book, Alzheimer’s, a Love Story: One Year in My Husband’s Journey, is also an interesting read.
Paula Span cites leading experts and scientific research to highlight the burden on family caregivers in Family Caregivers Feel the Weight, in The New York Times.
Brené with Jason Karlawish, M.D. on The Problem of Alzheimer’s is a charming and engaging dialogue about Karlawish’s new book.
Varshini Chellapilla tells the story of Bob and Lena in “The Caregiver’s Marathon.” She highlights the challenges along the way to defining an effective plan to manage the disease on a day-to-day basis, and denial as a significant hurdle along the way.
Katie Engelhart shines a light on the suffering of people with dementia during the pandemic. In her opinion article in The New York Times, “We Are Going to Keep You Safe, Even if It Kills Your Spirit,” she draws from interviews with experts, families, and people suffering from dementia to highlight the gross lack of understanding and support for the needs of people with Alzheimer’s disease, projected to be 13.8 million in 2050, just in the United States.
Chris Kenrick, Palo Alto Weekly, gave a behind-the-scenes account ofBob’s Last Marathon in the publication’s Living Well section on March 5.
Dr. Anthony Fauci discusses how COVID-19 impacts the dementia population, and the important role of the COVID-19 vaccine for this population. Interview by Katie Brandt, Director of Caregiver Support Services and Public Relations, Massachusetts General Hospital Frontotemporal Disorders Unit.
HBO’s Alzheimer’s Project has a documentary about caregivers. It is “a collection of five portraits, each of which highlights the sacrifices and successes of people experiencing their loved one’s gradual descent into dementia.”
The U.S. Department of Health and Human Services offers good information under Caregiver Resources. One example is Long-Distance Caregiving: Twenty Questions and Answers.
The National Institute on Aging has a useful booklet, Understanding Alzheimer’s Genes: Know your family history.
View a touching video: Ballerina with Alzheimer’s hears Swan Lake, begins to dance.