Chapter X.
Information for Caregivers
Below are just some of the organizations, publications, and/or websites that family caregivers can turn to for more information and resources.
In Indiana
800-986-3505
AAAs are nonprofit agencies that identify needs and plan and coordinate services for older persons or persons with disabilities in a particular area. There are sixteen (16) Area Agencies on Aging in Indiana. Each AAA provides information and counseling about long term care options and support services for family caregivers.
To find the AAA for your loved one, along with contact information, click on the link above and then select the area on the map that covers the county where your loved one lives.
CICOA
www.cicoa.org
317-254-3660 or 800-432-2422
CICOA is the Area Agency on Aging in central Indiana. Its Elder Solutions’ service will help you find caregiving resources, support, and resource materials.
Alzheimer’s Association—Greater Indiana Chapter
www.alz.org/Indiana
317-575-9620 or 800-272-3900
The Alzheimer’s Association provides information, education and support including:
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A 24-hour a day helpline.
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Confidential care consultation provided by a master's level clinician who can help with decision-making support, crisis assistance and education on issues families face every day.
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A caregiver’s message board so you can be part of an online community.
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Care Finder—an interactive tool that gives you recommended options and a list of questions to ask when screening a care provider.
United Senior Action Family Education & Empowerment Program
www.usaindiana.org
317-634-0872 or 800-495-0872
The Family Education and Empowerment Program provides family caregivers with information about options for care at home, in assisted living or in a nursing home; helps prepare families to deal with placement outside the home should the need arise; and equips families with the knowledge and tools they need to get quality care.
Nationally
The Family Caregiver Alliance (FCA)
www.caregiver.org
415-434-3388 or 800-445-8106
The Family Caregiver Alliance is a national organization that provides information, education, services, research and advocacy to support the work of families who are caring for loved ones with chronic, disabling health conditions. The many resources offered by FCA include:
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One of the most extensive online libraries for caregivers in the country with hundreds of articles, forms, checklists and links to topic-specific materials.
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The Family Care Navigator, a state-by-state resource to help you locate government, nonprofit, and private programs and resources for caregivers, as well as for older adults and persons with disabilities in your area.
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Fact sheets and publications.
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Caregiving information and advice.
The National Family Caregivers Association
301-942-6430 or 800-896-3650
This association educates, supports, empowers and speaks up for caregivers. Among the many resources it provides are:
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Information and educational materials including Tips and Tools for family caregivers; information on agencies and organizations which provide caregiver support; and workshops on communicating effectively with healthcare providers.
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E-Communities, which connect family caregivers directly to other family caregivers in their own cities and states to share information and resources.
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Caregiver Message Boards where family caregivers can go for questions, support and general discussions on various topics concerning family caregiving.
AARP
The AARP website has a section devoted to caregiving. The site provides:
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An online toolkit to help you navigate the world of caregiving.
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A question and answer forum with a national expert on caregiving issues, such as caregiving problems and concerns, local resources, tools, respite assistance, and more.
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Articles about caregiving.
NCCNHR: The National Consumer Voice for Quality Long Term Care
www.nccnhr.org
202-332-2275
This national organization, which advocates on behalf of long term care consumers, has a wealth of fact sheets and publications with a particular focus on advocacy for quality nursing home care.
Since You Care Guides
Prepared by the Mature Market Institute, this series of guides provides practical suggestions and useful tools on a variety of specific care-related topics. The guide, “Becoming An Effective Advocate for Care,” is particularly useful.
Families of Loved Ones’ Magazine
This free, online magazine is designed to inform and support families who are caring for loved ones.
The New Old Age blog
This blog, written by a woman who experienced caregiving firsthand, touches on all aspects of caregiving and includes helpful information and suggestions. The author shares the stories of readers, the advice of professionals, and the wisdom gleaned from her own years spent caring for her late mother. You can read the articles and comments and respond if you wish.
Senior Decision
This site gives you access to a national listing for senior care and housing, including home health, assisted living and nursing homes. The unique feature of this site is that it allows you to rate a nursing home, assisted living residence or home health agency on a five-point scale and write a review. When you visit the site, you can read a review (if one has been written) or write one yourself based on your own experience. All reviews are screened and the identities of reviewers are kept confidential upon request.
Next Step in Care
Next Step in Care is designed to give family caregivers resources to assist them in the planning, communication and coordination that are necessary to achieve the best possible transition of a loved one when moving from one health care setting to another. The site includes guides and checklists on a wide range of topics, including admission to a hospital, planning for discharge from a hospital or rehab center to home, what to do when home health care services end, emergency room visits, and more. It also offers a section with definitions of terms that family caregivers will hear used in health care settings.
