Along the caregiving journey, many and varied challenges will arise -- some predictable, others surprising and unexpected. Co-existing physical, medical, emotional, cognitive, and other conditions, and even moment-to-moment situations, can impact the care recipient, the caregiver, and the care needed. These resources, though they cannot address all the possible challenges that may arise, can help caregivers, families, and advocates become more knowledgeable and confident, not only for their own family members, but also for initiating system-wide changes in the long-term care arena.
The Administration on Community Living and the Administration on Aging partner for a website containing information on many support resources for caring for an elder loved one.
The National Center on Elder Abuse has tips on helping an older loved one age in place safely when you can’t be at their side as often as you’d like.
The National Institute on Aging has published “Six Tips for Long-Distance Caregiving” to assist family members who live an hour or more away in organizing, managing, and engaging in their loved one’s care.
The National Center for State Courts, with the assistance of the American Bar Association Commission on Law and Aging, have created a training designed to assist individuals in exploring ways to help someone who may need assistance in making decisions with informal supports, legal options, and/or adult guardianship.
AARP has a Caregiving Resource Center covering a variety of challenges and settings.
National Family Caregivers Association offers information and support for caregivers.
Leeza Gibbons’ nonprofit Leeza’s Care Connection offers many resources for caregivers.
National Alliance for Caregiving has advocacy and policy initiatives in collaboration with many partners.
Family Caregiver Alliance, based in California, offers resources for all states.
Caring Today is an online support service for family caregivers.
AgingCare has a good article on coping tips for caregivers of loved ones with dementia:
In Care of Dad offers a “one-stop shop” of resources, from a family’s blog to emotional support to myriad “how-to” tips for dealing with a family member’s illness.
The Administration on Community Living and the Administration on Aging offer a nationwide resource to assist in locating various types of care for elders.
The Alzheimer’s Association has an interactive resource and planning tool for those addressing care needs for a loved one with dementia.
The Alzheimer’s Association provides tips and informationabout engaging those with dementia in daily activities that improve the quality of life.
The Alzheimer’s Association discusses the issues in late-stage dementia and managing caregiving concerns.
Teepa Snow is a well-known teacher and advocate for positive approaches to care for people with dementia and other cognitive challenges. A myriad of resources and contact information are available on her web site.
Our Mother’s Voice CEO discusses how Quality of Life changes when caregivers begin to understand the communicative intent of behavior in people with dementia, in the video presentation “Behavior IS Communication! – My Mother’s Story”:
CaringKind has updated their consumer guide on Best Ways to Comfort Someone with Advanced Dementia to include the impact of the Covid pandemic.
The source page for this resource includes an explanation of purpose.
A 15-year-old boy created an app to help his grandmother with dementia. Now it's free for personal and home care team use. Read about it and download it here.
We could all use an uplifting story. This is one: an old jazz musician with dementia reunited with his band mates and his music, a testament to the power of music and memory.
One daughter has chronicled her experiences with her father’s dementia on Facebook:
National Consumer Voice has informational resources for caregivers of loved ones with dementia.
The National Institute on Aging provides resources for caring for someone with Alzheimer’s.
An interesting example of how dementia can be something else entirely provides a lesson learned: rule out physical illness and medication side-effects before assuming it’s dementia!
The National Plan to Address Alzheimer’s Disease is updated annually and focuses on research, prevention, cure, and best practices for treatment.
Act on Alzheimer’s offers a variety of resources and tools for families, caregivers, and communities dealing with dementia care issues.
CCAL national advocacy organization produced a video depicting person-centered care for those with dementia.
See how one nursing home is bringing new meaning to the lives of residents with dementia as they nurture orphaned kittens.
The Dementia Action Alliance has published a paper discussing the use of language when communicating with people with dementia, and the importance of using positive and supportive words to describe and to interact with people with dementia. The paper can be accessed here.
This article provides a perspective in understanding how people with dementia can still have quality of life.
Three articles about travel and activities when caring for a loved one with dementia:
National Institute on Aging offers a guide on how to prepare for and deal with hospitalization of a loved one with dementia.
The Alzheimer’s Society describes assistive devicesthat can help both the dementia patient and the caregiver succeed at home.
The Veterans Administration sponsors a short video illustrating how a caregiver might handle dementia with agitation.
The World Health Organization’s Alzheimer’s Disease International project published information for familiesrelated to coping with the disease and supporting the caregivers.
Polisher Research Institute provides information and resources on palliative care for dementia, end-of-life care, and related topics.
Learn what palliative care should include for people with dementia here.
South Carolina’s own Dr. Macie Smith has a series of brief but excellent videos providing tips for family caregivers journeying with a loved one through dementia.
For facilities – and empowered advocates – CMS has released survey tools that can be used to measure the quality of care for residents with dementia.
Alzheimer’s Foundation of America has resources for caregivers.
This video shows the effect of music on people with dementiafrom the point of view of the family members who care about them.
A powerful book on dealing with dementia when medication is not the answer is summarized here. NOTE: this page is archival, and the links to the book are disabled.
Frontotemporal Degeneration is a rare and specific type of dementia with unique challenges. It is often mis-diagnosed. Access the Association for Frontotemporal Degeneration to learn about this form of dementia here.
National Council on Aging has resources for older adults caregivers, professionals, and advocates.
The Eden Alternative is a nonprofit organization dedicated to “de-institutionalizing” the care of elderly people.
LiLY, Lifeforce in Later Years, provides an uplifting view of graceful aging in one’s own home, with volunteer support, in communities in New York.
The American Society on Aging offers free web seminars for caregivers (no membership required) and continuing education courses for health care professionals.
Resources for Veterans needing in-home or nursing home assistance can be accessed here.
Dr. Martha Jo Atkins, PhD, LPC-S, discusses End of Life in a way that transforms the way we perceive the experience of the loved one who is reaching the end of life.
Compassion and Choices hosts a series of webinars on the topic of end stage experiences for patients, families, and practitioners, covering a variety of terminal conditions.
Medicare Hospice Care is not limited to comfort care, but includes an array of services if they are needed.
Medicare will continue to cover services not related to the terminal condition, even when a person is receiving hospice care.
End-of-life care is also called “palliative care”although the two are not identical in that palliative care can be rendered when one is not in the end stages of an illness. See this site for more information.
To learn how the states are addressing palliative care, access a report on the national review of state palliative care policies and programs from the National Academy for State Health Policy.
For information about the basics of home care and hospice, your rights, and regulatory oversight, click here.
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