These expert sources have been gathered with the help of care professionals and organizations dedicated to the needs of people with dementia. Contact us if you have resources youʼd like to share.
The 2021 Avenidas Care Forum launches on April 28 with a series of online events to address important topics that the pandemic has brought to the forefront, such as how to navigate health care systems, deal with dementia care and isolation, and handle advance care planning, all critical issues families should discuss.
Topics include Navigating Your Health During the Pandemic (April 28), Patients and Caregivers—The New Unit of Care (May 26), Caring for Someone with Dementia & Preserving Brain Health (June 23), It’s Time for Discharge from the Hospital (July 28), and What’s New in Palliative Care and End of Life Care (September 22). Paula Wolfson, LCSW, Avenidas Care Partners, is the moderator. Attendance is free, but preregistration for each session is required. You can register online. For questions about registration, please email or call 650-289-5400.
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.
Support Groups and Classes
Many organizations offer support groups and classes for caregivers and people with dementia. Below are a few examples. If you would like to recommend favorite groups or classes, please contact us.
Making Sense of Alzheimer’s offers a broad range of resources for families and caregivers. 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.
The Alzheimer’s Association is a nationwide organization that provides care and support to people with Alzheimer’s and other dementia and their caregivers. The 24/7 Helpline, 800-272-3900, will connect you to support groups, education programs, care consultation, resources, or your local office.
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. 800-445-8106
Penn Memory Center (Philadelphia, PA) offers classes, support, and a wide range of 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. Most programs are online and open to the general public. You can learn more and optionally subscribe to their email updates here.
The Massachusetts Alzheimer’s Disease Research Center lists 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 out 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.
Videos in multiple languages are available from the UCLA Alzheimer’s and Dementia Care Program.
A number of care training resources are available from the Alzheimer’s Association.
Family Caregiver Alliance has a number of archived webinars.
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 of Bob’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.
Being Patient is a go-to resource for up-to-date news on new developments as well as ongoing research and different facets of risk factors, diagnosis, and disease progression. A collection of perspectives from people suffering from dementia and their families offers a window into the many ways people learn to live with the disease.
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.