Long Term Care: Community-Based Organizations
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Public programs for long term care are important sources of information, but you may find that information from nongovernmental sources answers more of your immediate questions. These sources may be national organizations concerned with issues related to aging, national disease-specific organizations with local or regional chapters, service organizations in your community, and others.
Some organizations do advocacy, some provide services, and some do both. Some are primarily focused on the older person or person with disabilities; others on the person and their family members.
Many of the public agencies will refer you to these local resources, but do an environmental scan of your own. A state or city Department of the Aging, for example, may have lists of community agencies that it funds, but its list may not include other organizations, such as faith-based groups or volunteer organizations.
There is no comprehensive list of these organizations, and there are hundreds of them, so you will have to do some detective work (again, a friend or family member can help out).
But most of the major national organizations can also direct you to local resources. Some disease groups have several organizations providing information, so you should compare the sites to see which one offers the most relevant information for you.
Here are a few sites to get started:
AARP: From the home page you can go to several different subject categories, such as health, work and retirement, home and family (which includes caregiving), and money. Each of these sections provides information and directs you to other resources.
Alzheimer’s Association: This site has links to local chapters, which offer educational sessions, support groups, and other services. The main site has information about Alzheimer’s disease and other dementias, including research and treatment.
American Diabetes Association: The website has links to local chapters, information on prevention and treatment, and services.
American Heart Association: The AHA has information about heart disease and stroke, treatments, and prevention.
Cancer Care: Cancer Care’s website provides free professional support services to anyone affected by cancer. The organization has educational programs for patients and caregivers, counseling services, and limited financial assistance. Services are available online and by phone.
National Council on Aging: Through its BenefitsCheckup tool, NCOA has information for older adults on accessing benefits such as help paying for medications or food. The tool is organized by state or zip code.
National Hospice and Palliative Care Organization: This organization has information about end-of-life concerns and links to help you find providers of both types of services.
Small organizations may not have staff to respond immediately to your requests. You may have to call back a few times to get the information you need. Be patient but persistent.
This list is only a glimpse into the multiple resources available through voluntary health organizations and advocacy groups. Search the Internet by disease, by area of interest (treatment options, financing, research, and more) to drill down into your specific areas of interest.
Don’t be misled by sites that promise cures or easy ways to finance long-term care. The Internet is a hotbed of literally incredible offers and fraudulent schemes.