Planning for Long-Term Care

March 30, 2001

Most older people are independent. But later in life--especially in the 80s and 90s--you or someone you know may begin to need help with everyday activities like shopping, cooking, walking, or bathing. For many people, regular or 'long-term' care may mean a little help from family and friends or regular visits by a home health aide. For others who are frail or suffering from dementia, long-term care may involve moving to a place where professional care is available 24 hours a day. 

The good news is that families have more choices in long-term care than ever before. Today, services can provide the needed help while letting you stay active and connected with family, friends, and neighbors. These services include home health care, adult day care, and transportation services for frail seniors as well as foster care, assisted living and retirement communities, and traditional nursing homes. 

Planning Ahead The key to successful long-term care is planning. You or your family may need to make a decision in a hurry, often after an unexpected emergency like a broken hip. Be prepared by getting information ahead of time. That way, you will know what's available and affordable before there is a crisis. To start: 

If you are having trouble with things like bathing, managing finances, or driving, talk with your doctor and other health care professionals about your need for help. A special type of social worker, called a geriatric case manager, can help you and your family through this complex time by developing a long-term care plan and locating appropriate services. Geriatric case managers can be particularly helpful when family members live a long distance apart. 

If you are helping a family member or friend, talk about the best way to meet his or her needs. If you need help for yourself, talk with your family. For instance, if you are having trouble making your meals, do you want meals delivered by a local program or would you like family and friends to help? Would you let a paid aide in your home? If you don't drive, would you like a friend or bus service to take you to the doctor or other appointments? 

Learn about the types of services and care in your community. Doctors, social workers, and others who see you for regular care may have suggestions. The Area Agency on Aging and local and state offices of aging or social services can give you lists of adult day care centers, meal programs, companion programs, transportation services, or places providing more care. 

Find out how you may--or may not--be covered by insurance. The Federal Medicare program and private 'Medigap' insurance only offer short-term home health and nursing home benefits. Contact your state-run Medicaid program about long-term nursing home coverage for people with very limited means. Also, your state's insurance commission can tell you more about private long-term care policies and offer tips on how to buy this important insurance. These agencies are listed in your telephone book, under 'Government.' Be aware that figuring out care for the long term isn't easy. Needs may change over time. What worked 6 months ago may no longer apply. Rules about programs and benefits change, and it's hard to know from one year to the next what may be available. Also if insurance coverage is very limited, families may have problems paying for services. Having adequate long term insurance coverage to pay for services is advised.

A Need for More Care At some point, support from family, friends, or local meal or transportation programs may not be enough. If you need a lot of help with everyday activities, you may need to move to a place where care is available around-the-clock. There are two types of residential care: 

Assisted living arrangements are available in large apartment or hotel-like buildings or can be set up as 'board and care' homes for a small number of people. They offer different levels of care, but often include meals, recreation, security, and help with bathing, dressing, medication, and housekeeping. 

- Skilled nursing facilities --'nursing homes'--provide 24-hour services and supervision. They provide medical care and rehabilitation for residents, who are mostly very frail or suffer from the later stages of dementia. Sometimes, health care providers offer different levels of care at one site. These 'continuing care communities' often locate an assisted living facility next to a nursing home so that people can move from one type of care to another if necessary. Several offer programs for couples, trying to meet needs when one spouse is doing well but the other has become disabled. Finding the Right Place To find the residential program that's best for you: 

Ask Questions. Find out about specific facilities in your area. Doctors, friends and relatives, local hospital discharge planners and social workers, and religious organizations can help. Your state's Office of the Long-Term Care Ombudsman has information about specific nursing homes and can let you know whether there have been problems at a particular home. Other types of residential arrangements, like 'board and care' homes, do not follow the same Federal, state, or local licensing requirements or regulations as nursing homes. Talk to people in your community or local social service agencies to find out which facilities seem to be well run. 

Call. Contact the places that interest you. Ask basic questions about vacancies, number of residents, costs and method of payment, and participation in Medicare and Medicaid. Also think about what's important to you, such as transportation, meals, housekeeping, activities, special units for Alzheimer's disease, or medication policies. 

Visit.When you find a place that seems right, go talk to the staff, residents, and, if possible, family members of residents. Set up an appointment, but also go unannounced and at different times of the day. See if the staff treats residents with respect and tries to meet the needs of each person. Check if the building is clean and safe. Are residents restrained in any way? Are social activities and exercise programs offered--and enjoyed? Do residents have personal privacy? Is the facility secure for people and their belongings? Eat a meal there to see if you like the food. 

Understand.Once you have made a choice, be sure you understand the facility's contract and financial agreement. It's a good idea to have a lawyer look them over before you sign. A Smooth Transition Moving from home to a long-term care facility or nursing home is a big change. It affects the whole family. Some facilities or community groups have a social worker who can help you prepare for the change. Allow some time to adjust after the move has taken place. 

Regular visits by family and friends are important. They can be reassuring and comforting. Visits are necessary, too, for keeping an eye on the care that is being given. 

Resources The following organizations and agencies can provide information about assistance and long-term care: 

The Eldercare Locator (1-800-677-1116) can direct you to your Area Agency on Aging. They will give you information on local long-term care resources and programs. Visit their website at 

The Nursing Home Information Service at the National Council of Senior Citizens, 8403 Colesville Road, Suite 1200, Silver Spring, MD 20910 (301-578-8938) has information on community services and offers a free guide on how to select a nursing home. Visit their website at 

The Health Care Financing Administration publishes the 'Guide to Choosing a Nursing Home' and the annual 'Guide to Health Insurance for People with Medicare.' The nursing home guide includes a detailed checklist. Call 1-800-638-6833. Visit their website at 

Each state Office of the Long-Term Care Ombudsman visits nursing homes on a regular basis and handles complaints. Find your ombudsman by calling the National Association of State Units on Aging at 202-898-2578. The association has publications about long-term care and can provide a list of facilities. 

Other sources of information include: The American Association of Homes and Services for the Aging , 901 E Street, N.W., Suite 500, Washington, D.C. 20004-2011; call 202-783-2242. Visit their website at 

The Assisted Living Federation of America , Suite 400, 10300 Eaton Place, Fairfax, VA 22030; call 703-691-8100. Visit their website at 

The American Health Care Association ,1201 L Street, N.W., Washington D.C. 20005; call 202-842-4444. 

The National Citizens' Coalition for Nursing Home Reform's 1publications list is available from Suite 202, 1424 16th Street, N.W., Washington, D.C. 20036-2211; call 202-332-2275. 

For more information about health and aging, contact: National Institute on Aging Information Center P.O. Box 8057 Gaithersburg, MD 20898-8057 1-800-222-2225 1-800-222-4225 (TTY) 

Alzheimer's Disease Education and Referral (ADEAR) Center Information Center P.O. Box 8250 Silver Spring, MD 20907-8250 20898-8057 1-800-438-4380 

National Institute on Aging 

U. S. Department of Health and Human Services Public Health Service National Institutes of Health 1996 


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