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For someone with Alzheimer’s disease (AD), it is easy to feel isolated and not know where to find trustworthy information and resources. The same goes for caregivers and family members of people with AD. Proper knowledge and resources to support you and your loved one can help you navigate this difficult journey.
As of 2022, there are 6.5 million people in the US living with Alzheimer’s, and an estimated 16 million people serve as their caregivers (CDC, 2019). Given how many people are either living with the disease or taking care of someone with AD, many places offer support. For example, community organizations often provide low-cost or even free volunteer services, including support groups and respite care.
This resource guide is meant to help you find the right resources for your or your loved one’s needs:
Places to find care for Alzheimer’s
- Alzheimer’s Association 24/7 Helpline—This hotline—(800) 272-3900—is free and available 24/7, 365 days a year. Specialists offer confidential support and information to people living with dementia and their families.
- Eldercare Locator—A public service of the US Administration on Aging that connects you to services for older adults and their families in your area
- National Clearinghouse for Long-Term Care Information—A government site that helps you plan for long-term care needs and find services
Community support for families and caregivers
- Alzheimer’s Association community finder—You can find ways to connect with others who have been impacted by Alzheimer’s. Support groups are held virtually or in person.
- Alzheimer’s Association support group finder—Find a support group virtually or in person by zip code.
- Caregiver Nation—This Facebook group offers family caregivers support, information, and resources.
- Caregiver Resources & Long-Term Care—The Department of Health and Human Services provides information on resources, assistance, support, and government health resources.
- Community resource finder—This site provides caregivers with connections to area agencies on aging and other local resources for finding respite care, insurance counseling, transportation, and other services.
- Family Caregiver Alliance—This site from the National Center on Caregiving provides a state-by-state, online guide to identify programs and services for anyone involved in caregiving.
- Federal Resources for Caregivers—This is a collection of resources from federal agencies.
Finding financial support
- National Institute on Aging, Paying for Care guide—Many older adults and caregivers worry about the cost of medical care. These expenses can use up a significant part of monthly income, even for families who thought they had saved enough.
- National Council on Aging Benefits Check—This is a private group, and it has a free service that can help you find federal and state benefit programs that may help your family. These programs can help pay for prescription drugs, heating bills, housing, meal programs, and legal services.
Educational materials on Alzheimer’s disease
- Alzheimers.gov—This website is designed to educate and support people whose lives are touched by Alzheimer’s disease and related dementias. It includes information on living with dementia, dementia research, clinical trials, and resources for caregivers.
- Alzheimer’s Disease Education and Referral (ADEAR) Center—A program of the National Institute on Aging (NIA), this site offers information concerning Alzheimer’s disease for health professionals, people with AD, and their families.
- National Institute on Aging—This site provides resources for Alzheimer’s disease caregiving. Learn how to respond to changes in communication and behavior, provide everyday care, and get help when needed.
Alzheimer’s research and clinical trials
- Alzheimer’s Association trial match—This tool from the Alzheimer’s Association connects individuals living with Alzheimer’s, caregivers and healthy volunteers to clinical trials that may advance Alzheimer’s research.
- Alzheimer’s clinical trial finder—This site lets you search for actively recruiting studies that you may be able to participate in, or help you learn about new interventions and treatments being considered.
- Alzheimer’s Association. (2022). Help & support, community. Retrieved from https://www.alz.org/help-support/community
- Centers for Disease Control and Prevention (CDC). (2019). Caregiving for a person with Alzheimer’s disease or a related dementia. Retrieved from https://www.cdc.gov/aging/caregiving/alzheimer.htm
Dr. Chimene Richa is a board-certified Ophthalmologist and Senior Medical Writer/Reviewer at Ro.