How to Support Friends and Loved Ones Who Have Dementia or Are Caregivers
Find a toolkit of ways you can be supportive of a friend or relative who has Alzheimer's or is a caregiver, and make the most of the time you spend together. You'll get many practical tips and 'do and don't' conversation guides to keep you from feeling awkward or uncertain when dementia changes the relationship. To learn more, visit the Bookshelf tab above.
Books to help friends be friends
when it matters most
Blogs & Stories
#AlzAuthors is a collaboration between authors to share different works—fiction and nonfiction, for children and adults—that help people understand and cope with dementia and caregiving.
Articles, Organizations & Websites
The Alzheimer’s Association—The best resource I know for support and information—support groups, social events, fundraising, community resources, a national library of materials; Look up the chapter nearest you.
Alzheimers.net—Information, support, inspirational quotes
Alzheimer’s Reading Room—Well-subscribed blog for caregivers
The Alzheimer’s Store—Unique products to help patients with AD, many products for middle and late stages
AssistedLiving.org —List by state of assisted living facilities (not inclusive) and articles with questions to ask prospective facilities. Based on my experience, I would add this question, too: Has there ever been a lawsuit or formal complaint filed about your facility?
Blondes vs Brunettes: blondesvsbrunettes.org—Group formed to raise awareness of AD among young people; hosts an annual powderpuff football game fundraiser which has contributed over $1M nationally to Alzheimer’s Association chapters; not as much a resource of information as an innovative way to support the Alzheimer’s Association in selected cities; see also the Blondes vs Brunettes Facebook page.
Mayo Clinic—Information about Alzheimer’s disease; podcasts, interviews, articles, discussions
RehabNet.com—National Council on Seniors Drug & Alcohol Rehab
seniorguidance.org—Many articles and listings of assisted living facilities
Karen Garner—Karen’s husband, Jim, was diagnosed with early-onset AD. Karen writes honestly and compellingly about her journey as a caregiver with children still living at home
Kris Bakowski—Kris was diagnosed in her mid-forties with early-onset AD. She journals her daily life, posting many photographs of her family and friends. Her blog is an honest look at the difficulty of coping with dementia
Maria Shriver—An uplifting website (and can’t we all use an uplift?) with useful information and resources on caregiving and Alzheimer’s, as well as life in general
ARTICLES & WEBSITES ⎮ CAREGIVING
National Alliance for Caregiving—Comprehensive information for and about caregivers. Hosts Lotsa Helping Hands, a resource to help friends organize
Visual Education Center for Family Caregivers—Short, well-produced videos that portray the experience of AD through interviews of patients and caregivers. Informative and practical
https://cbdoilsandedibles.com (I spent some time reviewing this website. While not mainstream, the information is compelling and might provide another approach, worth discussing with your physician, to some of the problems of dementia. In my experience, relief can be found sometimes by thinking and looking "outside the box." Here are two references from the website: https://www.ncbi.nlm.nih.gov/pubmed/22129319, https://www.ncbi.nlm.nih.gov/pubmed/17713029).
6 Steps to Take When a Credit Card Holder Dies (This article may be useful, too, when a credit card holder has dementia and can no longer be financially responsible. Telephone numbers are provided and instructions about how to freeze credit reports, which is definitely a good idea.)
HEALTH & EXCERCISE
Mattressreviews.net (Website with helpful reviews if you're looking for a new mattress because you want to sleep better. The choices can be confusing.)
Sleep Help for Seniors—Very helpful guide about how sleep habits change as you get older.
HOUSING AND SAFETY
Building the Ultimate Reading Nook for Your Home (This link was sent to me by Jim Vogel. Many people with dementia can no longer read, but my mother, like Jim's enjoys it, even though she suffers from short term memory loss. Creating a comfortable, quiet sitting environment in your home can be helpful for a person with dementia, even if it isn't a reading nook.)
A Senior's Guide to Moving in with a Roommate
What is Environmental Illness? Cleaner Indoor Air (I realize this link is not directly about seniors or dementia, but my 91-year-old mother lives with me and suffers from asthma, so I feel it's relevant for everyone's health to consider the inadvertent effects our living environment may have on health.)
@allweatherfrnd on Twitter
The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems, P. Murali Doraiswamy, MD, Lisa P. Gwyther, MSW, and Tina Adler (2008) St. Martin’s Press, 496 pages.Well written guide which helps with medical information and treatment options. Provides practical information on living with AD and strategies for maintaining brain health.
Connections: Engagement in Life for Persons Diagnosed with Dementia, Ellen Phipps & Barbara Braddock (2nd EDITION IN PRESS) The Alzheimer’s Association of Central and Western Virginia Chapter, 110 pages. Provides many topics, sentence starters and suggestions, color coded by stage, for engaging people with dementia in activities and conversations. You can quickly find the appropriate sections and gain an understanding of how to provide a safe, enjoyable environment.
Dancing on Quicksand: A Gift of Friendship in the Age of Alzheimer’s, Marilyn Mitchell (2002) Johnson Books, 189 pages. Memoir about Mitchell’s lengthy friendship with a man suffering from Alzheimer’s disease. Touching, funny, sympathetic, insightful.
A Grace Disguised: How the Soul Grows Through Loss, Gerald Sittser, (1995) Zondervan, 184 pages. Memoir about catastrophic loss and the aftermath. Sittser faces his difficult emotions and questions of faith with intelligence and courage, and without glossing over the hard truths. Takes us through his thoughts and feelings and the reclamation of his faith.
Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s, Barry Petersen (2010) Behler Publications. About facing early onset Alzheimer’s disease in a life partner. Jan Petersen was only in her 50's when she was diagnosed with Alzheimer's.
Love in the Land of Dementia, Deborah Shouse (2013) Central Recovery Press, 192 pages. A daughter’s memoir of her mother’s struggle with Alzheimer’s.
Making Loss Matter: Creating Meaning in Difficult Times, David Wolpe, (1999) Riverhead Books. Insightful, comforting, wise. Presents the struggle of grief in a clear, confident, compassionate voice.
The Memory Prescription, Gary Small, MD, with Gigi Vorgan (2011) Hyperion, 370 pages. Comprehensive guide to maintaining brain health. An inspiring motivational tool for changing counterproductive eating and exercising habits.
On Pluto: Inside the Mind of Alzheimer's, by Greg O'Brien (2014) Codfish Press, 240 pages. An investigative reporter's memoir about living with Alzheimer's.
Passages in Caregiving: Turning Chaos Into Confidence, Gail Sheehy (2010) William Morrow, 416 pages. Advice, guidance, resources on caregiving.
Partial View: An Alzheimer’s Journal, Cary Henderson, Edited by Jackie Henderson Main and Ruth D. Henderson, Photographed by Nancy Andrews (1998) Southern Methodist University Press, 97 pages. Duke-educated history professor Cary Henderson was diagnosed with AD in his 60's. He documented his experience during the mid-stage using a tape recorder. Transcribed and edited by his wife and his daughter, illustrated with black and white photographs. Sad and lovely book which quickly gives a sense of what living with mid-stage AD is like.
Seven Choices: Finding Daylight After Loss Shatters Your World: Elizabeth Harper Neeld, PhD (1990) Clarkson Potter, Inc., 332 pages. Still relevant 23 years after publication. Powerful and helpful to anyone who must face the loss of a spouse.
100 Simple Things You Can Do to Prevent Alzheimer’s and Age-Related Memory Loss: Jean Carper (2010) Little, Brown & Company, 322 pages. Easy to read and packed with useful information.
Still Alice: Lisa Genova (2009) Pocket Books, 300 pages. Novel about a college professor with early-onset Alzheimer’s disease. True-to-life and compassionately written, without the bleak ending you might imagine.
Voices of Alzheimer’s: Betsy Peterson (2004) Da Capo Press, 255 pages.Collection of quotations from people with Alzheimer’s disease, caregivers and others organized around common themes: the diagnosis, denial, anger, grief, gifts, etc. Reading it seems almost like attending a support group.
What’s Happening to Grandpa? Maria Shriver (2004) Little, Brown Books for Young Readers.
TO OUR CONTRIBUTORS
Michelle Billick of GoodCall
Julie Dunlap of The Simple Dollar
Elmer George, elderville.org
Blake Hughes of Bankrate, Inc.
David Lafferty of CreditCards.com
Stephanie Linder of SleepHelp.org
David Patterson of Pacific Medical Training
Charisse Marcella of AssistedLiving.org
Molly Natchek, RehabNet.com
Ashley Peters, Nursing Home Abuse Center
Lydia Poon of Money Geek
Patricia Sarmiento of PublicHealthCorps.org
Jessica Smith of MattressHelp.org
Kellen Smith of Tuck Sleep
Marie Villeza of elderimpact.org
Jim Vogel of elderimpact.org