10 Organizations Every Caregiver Should Know
Caregiving is a responsibility best managed with plenty of help. Yet many of the nearly one in four adults who are caring for another adult miss out on the bounty of resources available through dozens of local and national organizations whose mission is to help caregivers, either because they're not aware that they exist or they don't realize what they offer.
The following groups can help you solve practical problems, save time, lighten your stress load, learn about common problems of aging, connect with others in similar situations, and otherwise simplify the many challenges that caring for an older adult can bring.
Area Agency on Aging
How they can help you: Get general information about eldercare and referrals to aging-related services and programs in your community. These resources include case managers, transportation, meals, adult day services, in-home caregivers, legal assistance, home repair and modification, housing options, and more. The exact name of the organization can vary by community. Area Agencies on Aging are your single best bet for identifying eldercare services in a specific community.
Extra help: Information and referrals are free, and services referred to are often free or inexpensive.
Who they are: The 629 Area Agencies on Aging are a key part of the National Aging Services Network, operating under the U.S. Administration on Aging.
How to find: Check the National Association of Area Agencies on Aging website or the Caring.com local directory. Or go directly to the federal Eldercare Locator or call 800-677-1116.
Family Caregiver Alliance
How they can help you: This advocacy, research, and education group focuses on family caregivers (of aging parents and of other disabled adults or children). Sign up for webinars about tough topics like paying for care or dealing with siblings, access a trove of fact sheets about common conditions and problems, or participate in online discussion groups.
Extra help: The Family Care Navigator tool is a handy list of safety-net services in each state. You'll find links to government agencies and nonprofit and for-profit services in your area. The Family Care Navigator also includes links to national agencies and services.
Who they are: Pioneers in the area of promoting and supporting caregiver needs, FCA was founded in 1977 to create support for long-term care services in San Francisco. They still operate many California-based educational and support programs -- including one-on-one social work counseling for San Francisco Bay Area residents -- but their advocacy work and caregiver education outreach is now nationwide. The National Center on Caregiving is an FCA offshoot formed in 2001 to develop policies and programs to support caregivers in all 50 states.
How to find: Go to Family Caregiver Alliance.
National Alliance for Caregiving
How they can help you: Mainly, this influential advocacy group helps individual caregivers indirectly by analyzing public policy and conducting research on topics like the economic and personal impact of caregiving. It also produces public awareness campaigns and promotes state and local caregiving coalitions. But its website points you to tip sheets, webcasts, podcasts, and publications providing basic caregiver advice on issues like caring for someone who's depressed or long-term care planning.
Extra help: Family Care Resource Connection rates and reviews books, websites, videos, and fact sheets.
Who they are: The National Alliance for Caregiving is a nonprofit coalition of a wide mix of more than 30 groups that share an interest in family-based eldercare. Members include service and advocacy groups, corporations, grassroots groups, and more. Formed in 1996, the coalition produces research and policy suggestions intended to improve the quality of life for family caregivers.
How to find: Visit National Alliance for Caregiving.
Meals on Wheels Association of America
How they can help you: Find one of the more than 5,000 senior nutrition programs serving hot meals to older adults with its Find a Meal tool.
Extra help: While primary caregivers may not have the time, your relatives and friends can "give back" by going through the MOWAA site to volunteer time in their communities making deliveries, preparing meals, driving, or providing office help. Volunteers are the program's backbone.
Who they are: Meals on Wheels is the largest and oldest meal-services organization in the U.S., dating to a Philadelphia program in the 1950s. In 1976 it began working with senior nutrition programs nationwide to provide the resources, manpower, tools, and information needed to fight the problem of senior hunger.
How to find: Go to Meals on Wheels Association of America.
Independent Transportation Network
How they can help you: Those who need rides apply through a local affiliate group, paying a membership fee ($40 annually) and financing a transportation account based on estimated usage. Rides, in private cars driven by screened volunteers, average $9. Rides can be planned in advance or arranged as needed. This fast-growing service is mainly still in urban areas.
Extra help: Gift certificates let family members pitch in.
Who they are: A national nonprofit transportation service for older adults, the group marries information technology with grassroots support. It was founded by Katherine Freund, the mother of a toddler injured by an older driver; she decided that a flawed transportation system for older adults, not the older driver himself, was the cause and vowed to change this.
How to find: Visit ITN America.
National Council on Aging
How they can help you: Find out what benefits your loved one is entitled to through BenefitsCheckUp, a comprehensive benefits screening tool. Home Equity Advisor provides tools to help you use and protect the value of a home.
Extra help: ReStartLiving is a program to help older adults who are living with one or more chronic conditions enhance their health through better self-management. Evidence-based workshops are available online and in person and can support your loved one's ability to remain independent longer.
Who they are: A nonprofit service and advocacy group in Washington, D.C., NCOA calls itself a national voice for older Americans and the community organizations that serve them. The organization works with thousands of groups nationwide to build creative solutions to aging-services needs, including many programs for the public. Formed 60 years ago as the National Committee on Aging (and renamed in 1960), this influential mega-group has been involved in the formation of many influential initiatives, including the American Association of Homes for the Aging, Meals on Wheels, Foster Grandparents, and the Center for Healthy Aging.
How to find: Go to National Council on Aging.
Next Step in Care
How they can help you: Because they tend to be left out of the discharge planning loop, caregivers are often caught off guard by the added complexities of transitioning a loved one from one care situation to another, such as from home to a hospital, from the hospital to a rehab facility or back home, or to a long-term care facility. Next Step in Care has created detailed guides and checklists to help you ask smart questions, know how to best prepare, and not overlook anything.
Extra help: Next Step in Care materials can be viewed from a smartphone or other device so you have them on hand in the event of an ER visit or while away from home; the checklists and forms are also downloadable as PDFs.
Who they are: Next Step in Care: Family Caregivers and HealthCare Professionals Working Together is a program of the United Hospital Fund, a New York-based organization that promotes high-quality, patient-centered care. In 2006, the fund created a task force to develop an initiative that would help family caregivers through these care transitions, and Next Step in Care was born. It's unique in that it addresses healthcare providers as well as family caregivers, and it focuses on transitions not just in and out of hospitals but also to and from nursing homes, in-home care, and rehabilitation programs.
How to find: Visit Next Step in Care.
Well Spouse Association
How they can help you: Providing care to a chronically ill husband, wife, or life partner brings particular challenges. This group connects you with others who have been there (or are also there now), for a unique kind of support. A forum and chat line are available to everyone; paying members ($30 per year) also have access to local support groups, new telephone support groups, newsletters, and weekend respite events.
Extra help: A mentor program pairs caregivers with someone who's been through a similar experience before for one-on-one advice and support
Who they are: Ten spousal caregivers between the ages of 30 and 57, whose mates had diseases ranging from multiple sclerosis and diabetes to heart and brain conditions, came together in Wallingford, Pennsylvania, in 1988 to create the Well Spouse Association. They now count more than 3,000 members (and say there are 7 million spousal caregivers nationwide). WSA mottoes: "You are not alone" and "When one gets sick "¦ two need help."
How to find: Visit Well Spouse Association.
VA Caregiver Support
How they can help you: Resources specifically designed for caregivers of U.S. military veterans include professional support coordinators who match you to services for which you're eligible, adult daycare centers, home-based care services (skilled and unskilled), a telehealth program (education, training, and support for those who don't live near a VA center), and a home hospice program.
Extra help: The National Caregivers of Veterans Support Hotline (1-855-260-3274) can help you access services, connect you with a VA support coordinator near you, or just listen.
Who they are: Part of the federal U.S. Department of Veterans Affairs, the Caregiver Support program is a recent addition to the large roster of veterans' services. The VA was formed to fulfill President Abraham Lincoln's promise, "To care for him who shall have borne the battle, and for his widow, and his orphan."
How to find: Go to VA Caregiver Support.
Medicare Resources for Caregivers
How they can help you: Find out what type of expenses the various Medicare programs each cover, see videos about topics like hospital discharge planning, and learn about sources of caregiver support, including first-person stories, to-do lists, and state-by-state lists of helpful organizations. You can also submit questions about which tests, items, and services are covered and get pointed to a list of links with possible answers.
Extra help: Ask Medicare is a service for caregivers, expanded in early 2012, that gives information about care options, financial support, and billing terms. You can also sign up for a free Ask Medicare e-newsletter that gives caregiver advice and resources.
Who they are: Medicare is the federal health insurance system for people with certain disabilities or who are over age 65. While the whole website offers all kinds of Medicare-related information, its Caregiving section is written specifically for family caregivers.
How to find: Medicare.gov is the official U.S. government site for Medicare.