Practical resources to help you navigate the caregiving journey.
Online Resources
The Heart of the Caregiver
Birthed out of the personal caregiving experiences of Mary Tuttelow, The Heart of the Caregiver is more than just a website with caregiving resources. It’s also a source of connection to online support groups as well as curriculum for caregiver support groups.
Alzheimer’s Association
Alz.org provides many helpful online resources for caregivers as well as links to community support groups and local resources and organizations serving individuals and families walking through Alzheimer’s or other forms of dementia.
Rosalynn Carter Institute for Caregivers
Founded by former first lady, Rosalynn Carter, The Rosalynn Carter Institute for Caregivers “was created grounded in the philosophy that it is crucial to prioritize family caregivers beyond the specific issue or health condition of those in their care.” RCI provides many useful resources for caregivers, as well as lobbying work for representation in government policy and employer benefits.
CaringBridge
You may be familiar with CaringBridge as a resource for caregivers of cancer patients, or other debilitating illnesses, but did you know they have resources relevant to any mode of family caregiving? One of the biggest challenges family caregivers experience is isolation and helplessness. Caring Bridge makes it easy to create your own Caring Bridge portal to raise awareness, community, and support for your loved one and your practical caregiving needs .
Caregiving Documentary on PBS
Caregiving Documentary on PBS was produced by Bradley Cooper, who himself spent a season caregiving for his father with cancer. This documentary dives into the world of both informal (family) and formal (career) caregivers. It is heart-wrenching at times, yet inspiring.
Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is the leading national organization dedicated to improving the lives of those living with Lewy body dementia (LBD), the second most common form of neurodegenerative dementia affecting approximately 1.4 million people in the United States alone.
Established in 2003, LBDA’s mission is to optimize the quality of life for those affected by LBD by accelerating awareness, advancing research for early diagnosis and improved care, and providing comprehensive education and compassionate support.
Journal of Sacred Work
The Journal of Sacred Work is based on the writings and meditations of Erie Chapman, which is offered to provide “health news, opinion & inspiration for radical loving caregivers”. Daily meditations and reflections provide insights and encouragement from other caregivers and caregiving experts.
Belightcare Consulting
Adria Thompson is the founder of Belightcare Consulting - a Speech Language Pathologist who is dedicated to improving the lives of people with dementia and other neurodegenerative diseases by teaching practical, evidence-based dementia strategies. Adria’s Instagram feed is full of quick, practical helps - a must subscribe for caregivers!
Caregiver Action Network
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization. It works to improve the quality of life for tens of millions of family caregivers. These Americans care for loved ones with chronic conditions, disabilities, or diseases. CAN also supports those meeting the living needs of older adults.
Eldercare Locator
Just punch in your zip code and Eldercare Locator will list government and community service agencies in your area that provide a variety of eldercare, or caregiving-related services (including Health Insurance counseling, Legal services, and Long Term Care Ombudsman - a really important contact to have if you have a loved one in Long Term Care) .
Young Adult Caregiving
Young Adult Caregiving - Of the estimated 53+ million unpaid family caregivers in the United States, one quarter of those are Millennial or Gen Z. There are unique challenges and concerns young adults in this roughly 18-40 year old category face. This article by Family Caregiver Alliance is helpful if you are in that category and struggling with identity and life as a family caregiver.
Resources for Caregivers of Veterans
For family caregivers of veterans, these are a couple of great organizations for information, resources, and support. The Elizabeth Dole Foundation’s mission is to empower military and veteran caregivers, their families, and their communities through programs, partnerships, and advocacy that drive innovation and sustainable solutions.
The VA Caregiver Support Program (of Veterans Affairs) offers clinical services to caregivers of eligible and covered Veterans enrolled in the VA health care system. The program’s mission is to promote the health and well-being of family caregivers who care for our Nation’s Veterans, through education, resources, support, and services.
Books and Journals
Finding Grace in the Face of Dementia
John Dunlop, MD
From christianbook.com: “A diagnosis of dementia in a loved one can be both frightening and frustrating. Only a biblical foundation fuels a Christian response that both honors the patient and glorifies God. Drawing on years of professional experience working with Alzheimer's patients, Dr. John Dunlop wants to transform the way we think about dementia.
A Spirituality of Caregiving
"Caregiving is … about forming a relationship with another whom we might never have chosen to know. It is about doing all we do practically with the intention of growing into a relationship of respect, listening, presence, and truthfulness," Henri Nouwen writes.
The Caregiver Meditations
Reflections on Loving Presence
"The art of living is exactly that—an art. It requires attention, education, and most of all, exquisite presence. Don’t let the the news on television interfere with your attention to the news of your own life. We each have the chance to remember this very day by how we live it and what we choose to remember in our writing. The way we live this day can enrich the lives of others and ourselves and provide nourishment for our days and nights." Erie Chapman.
Community Resources
While the following may be location-based community resources, they are good sources of general education on seniorcare, caregiving in general, and navigating caregiving decisions and resources.
AgeWell Middle Tennessee is a non-profit community partner that addresses the unmet needs of older adults and caregivers through education, resource navigation, and by being a catalyst for comprehensive solutions. Older adults, caregivers and professionals throughout Middle Tennessee rely on AgeWell’s Directory of Services for updated information on community resources. ( * quoted from Vanderbilt University Medical Center)
Insight Memory Care Center of Fairfax, Virginia, while a memory care facility and community center in Fairfax, offers educational blog entries on memorycare, dementia, Alzheimers, and other eldercare related topics and concerns. One of these helpful resources is a free on demand, online training called Caregiver Training (“Caring for you - Mind, Body, Soul”)
The Resource Center on Aging is a ministry out of Harpeth Hills Church of Christ that seeks to enhance the aging experience by helping older adults find meaning and purpose in their lives. Through support groups and Wellness 66 education seminars, the Resource Center on Aging serves caregivers and older adults alike.
“…rendering care teaches the ability to be creative and to improvise. There are no cookbook approaches to handling all the situations that arise when caring for a person with dementia. Thinking creatively can be a spiritual experience when it is done by listening to God’s Spirit as he prompts us to think out of the box in new and fresh ways.”
— JOHN DUNLOP, MD. Finding Grace in the Face of Dementia
