Caregiving resource guide
Welcome
This set of online resources is meant to help current and prospective caregivers of older adults find the information and resources they need to provide the best possible care for loved ones, and for themselves.
Most of this information will be away from this site, with links to offerings from government and non-profit agencies with expertise about caregiving and older adults.
If you are new to the role of caregiving, the resource page about Getting Started may be helpful for you.
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General resource collections
For anyone in search of general overviews and helpful information about caregiving, AARP's Family Caregiving Guides collection is a good starting point, with downloadable PDF booklets, including ones in Spanish and Chinese. These are part of a general set of family caregiving resources also offered by AARP.
The Family Caregiver Alliance has links to more than 500 entries, which can be sorted and filtered by topic, resource type (e.g., checklists, videos, short text entries, longer text articles), and other criteria. Some resources are available in languages other than English, including Spanish, Chinese, Korean, Vietnamese, and Tagalog.
The federal Medicare program offers zip-code based searches for various types of health providers for older adults, including doctors, hospitals, nursing homes, home health services, hospice, rehab facilities, and others.
More collections of general resources
(about 20 links in all)
Phoro by Raychan on Unsplash (used under Unsplash license)
What you will find in this Resource Guide
NYMI Solutions Journalism Collaborative staff report
It’s been called “the unexpected career.” When failing physical or mental health leaves someone unable to live independently, the extra care and support they need often must be provided by a family member.
Research has documented that as a society, we’re largely unprepared to deal with the volume of people who will need such caregiving as they age.
Or download the overview as a PDF
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Guidance on specific topics
Dementia
Caring for someone with dementia is particularly challenging. For these caregivers, the American Geriatrics Society’s Health in Aging Foundation's resource page on dementia has information about causes, symptoms, diagnosis and other subjects. The Caregiver Action Network has an Alzheimer's Caregiver Video Resource Center with links to short videos about different aspects of caring for those with Alzheimer's or other dementia. And, of course, the Alzheimer's Association itself has many resources about the topic, including a community resource locator with zip-code searching for many needed services. A helpful guide about different types of dementia comes from Homewatch Caregivers, a commercial agency that provides home care.
Home-based care
Research shows that most older adults prefer to remain at home even when they are no longer fully independent and need help, which frequently comes from family caregivers. For those who find themselves in such a caregiving role, AARP offers care-at-home resource guides, and so does the United Hospital Fund’s Next Step in Care program. Medicare & Medicaid offers a 32-page booklet (downloads as a PDF) that explains how to find and compare home health agencies, eligibility and other details about the Medicare home health benefit. Homewatch Caregivers, a commercial agency that provides home care, has guides about different types of home care and how to decide whether home care is needed among several hundred entries on its blog
Getting support, respite and self-care
The demands of caregiving make it vital to get some help from others at times. The ARCH (Access to Respite Care and Help) National Respite Network and Resource Center offers a wide variety of resources including a respite care locator. The federal Administration for Community Living also has a support to caregivers page of resources while the American Geriatrics Society’s Health in Aging Foundation offers a resource page on caregiver health, including a Caregiver Self Assessment Questionnaire, and "tip sheets" on "How to Be the Best Caregiver You Can Be" and "Avoiding Caregiver Burnout." The Centers for Disease Control (CDC) offers ideas for Caring for Yourself When Caring for Another.
More resources on finding support, information and education.
(Including Michigan- and New York-specific lists of respite providers, support groups and training classes.)
Nursing homes and assisted living
When home care is not feasible, the additional care from assisted living or skilled nursing facilities might come into play. The National Institute on Aging, part of the federal Department of Health and Human Services, offers background on residential facilities, assisted living, and nursing homes. The American Geriatrics Society’s Health in Aging Foundation also offers resources on assisted living
More resources on assisted living and nursing homes
(including resources to help find facilities in New York and Michigan).
Advocating for your loved one
Sometimes, not everything is going right with a service or provider and caregivers need outside help from others who can advocate for them. The federal Administration for Community Living empowering advocacy page has information and links to other agencies providing advocacy. So does the National Consumer Voice for Quality Long-Term Care.
(including links to ombudsman programs from New York and Michigan).
Financial and legal matters
AARP has a financial and legal resources page, while the Administration for Community Living also offers guidance about legal assistance. Long-term care insurance provider Genworth is a good source of information about costs of care.
More resources on legal matters
(including ones specific to New York and Michigan.
Geography-specific resources
The New York & Michigan Solutions Journalism Collaborative's news coverage is focused on the Buffalo, NY; Rochester, NY; and Detroit, MI areas, and has collected some resources available specifically for Michigan residents or New York residents, including some specifically from the Buffalo, Rochester and Detroit areas.
This resource guide is a project of the New York & Michigan Solutions Journalism Collaborative (NYMI SOJO), a group of news, academic and community organizations pooling time, talent and resources to cover chronic problems with a solutions lens. It is modeled on other successful news collaboratives supported by the Solutions Journalism Network.
NYMI SOJO is a nonpartisan news organization committed to transparency and editorial independence. We do not support or advocate for any particular idea, model, organization, or agenda.
Major funding for the collaborative is provided by a grant from the Ralph C. Wilson, Jr. Foundation, and the creation of the Resource Guide as part of a Caregiving Coverage Data Center was supported by a grant from the Health Foundation for Western and Central New York.