In my experience as a long term care professional, Long Term care (LTC) is one of those topics, outside of politics and religion that sometimes bring out strong, diverse feelings and emotions from people. It is very possible that thinking about our old age, and not knowing what is going to happen may contribute to the emotional anxiety we have about discussing the topic; but I am not here claiming to have the answer why there are strong feelings sometimes.

There is a mountain of information on long term care from the federal, state, and local governments, quasi-government agencies, and community programs. When you access the Centers for Medicare and Medicaid Services (CMS) website, and Health and Human Services website, you will find lots of information on long term care. All fifty states and the District of Columbia, have information also from their Departments of Health. In addition the State Ombudsman Programs and other community resource centers throughout the nation have information on long term care and long term care facilities, including skilled nursing facilities. Those of us in the Long Term care profession/industry are aware of the depth of regulations, both federal and state regulations that govern LTC industry. LTC is one of the heaviest regulated industries in the nation, so there is information to be had when it comes time to start having that discussion. I believe that the issue is not so much lack of information but it could be putting all that information together, interpreting and sorting through could get overwhelming, particularly when you are planning for the next stage in your life.

As stated above, skilled nursing facilities with or without rehabilitation centers, nursing facilities, and home health care agencies are governed by federal and state regulations. There are also state and/or federal regulations for assisted living facilities and other long term care programs. The regulations define long term care services as services provided to meet the medical and skilled nursing, and rehabilitative needs for injured, disabled, or sick persons, on a regular basis for health-related care and services. These services will include some "Activities of Daily Living" (ADL) services. Activities of daily Living include everyday tasks such as "Bathing, Dressing, Using the toilet, Transferring from bed to chair or vice versa, Caring for incontinence, and Eating". If someone cannot perform these daily tasks independently, the need for long term care is becoming imminent. Activities of daily living are important drivers that determine the type of long term care a person needs. Chronic conditions and disability are reasons why people need skilled nursing, nursing, and skilled home care.

Based on the U.S. Department of Health and Human Services, the U.S. Census Bureau, the National Center for Health Statistics, the population of 65 and over was projected to increase by 15% between 2000 and 2010 from 35 million to 40 million, and to 55 million from 2010 to 2020 which will be a 36% increase for that decade. The 85+ population is projected to increase from 4.2 million in 2000 to 5.7 million in 2010, a 36% increase, and then to 6.6 million in 2020 which will be 15% increase for the decade. Further government data reveal that 70% of people over 65 will require some type of long term care service, including care provided by family and friends, during their lifetime. More that 40 percent will need care in nursing homes1.

The long term care industry has two categories of long term care. There is the Home and Community Based, and there is the Facility Based. The home and community based commonly have the following types of services and options: 1) home care with family and friends as the primary caregivers, or the elderly or family member(s) having paid services, 2) Adult Day Care Programs where your loved ones may spend some time during the day time, adult day care is usually locate in a nursing home, 3)Home Health Care and Home Care, providing skilled nursing care, and/or personal care of some ADLs, 4) Emergency Response Systems, these are agencies/businesses that help older adults who are home alone 5) Meal Programs, for those who have difficulty shopping and cooking, and then 6)Senior Centers.
Facility Based commonly include the following options: 1) Some form of Group Homes, 2) Residential Care Facilities, 3) Assisted Living Facilities, 4) Continuing Care Retirement Communities (CCRC), 5) Skilled Nursing Facilities, and 6) Nursing Facilities/Nursing Home2. All facility based facilities are mainly regulated by the federal government. The states are working on regulations for assisted living facilities.

Is is my observation that things appear to be moving towards initiatives that encourage older adults to stay in the community and in their homes for as long as is practicable, as opposed to moving to nursing homes. But then again there are factors within the older adult's life and lifestyle that contribute to whether the older adult chooses community based or facility based nursing home.

Whether your decision is to choose a facility based nursing home or community based either for yourself if you need long term care, or for your loved ones, experts will tell you not to wait until the last minute. Experts say that the point at which long term care is needed is not the time to start having your first discussion about long term care.

There are several tools to help older adults and families with the decision making process. There are tools in the CMS, Department of Health and Human Services websites that older adults and their families can utilize to assist in making these decisions. Areas of one's life and lifestyle that should be considered in this process include:
- The individual's health and family health history
- Discussion with the primary care physician
- Discussion with family and /or friends - how does the individual and/or his/her family and friends feel about long term care?
- Financial Planning
- Review of Health insurance coverage
- Family support both emotional and financial
- Community support
- Obtain information from the government websites about long term care
- Access to and discussion with community social workers
- Knowledge about about long term care - what are the myths and what are the facts?

If you have made a decision to choose facility based option, then log on to the CMS website and check out the "Nursing Home Compare" profile of the Medicare and Medicaid certified nursing homes for your state. "Nursing Home Compare" has nursing homes listed by cities, counties, and states. This site gives information about survey results for each nursing home, quality measures, and the level of staffing in the nursing homes. You have the opportunity to compare survey results of nursing homes. In addition to "Nursing Home Compare" you can call the Long Term Care Ombudsman Resource Center in your county, because the ombudsman's program is another advocacy agency for the nursing home residents. Finally I cannot over emphasize the importance of making a personal visit to nursing homes. Visiting the nursing homes give potential clients (residents) and families the opportunity to meet the staff, observe activities, observe staff interaction with residents, and have a feel for the environment.

For our elderly who may be getting to that stage in their lives, or baby boomers who have loved ones who may be getting to that stage in their lives, please have the discussion long before the need for long term care arises.

Nora Wellington, MBA, LNHA, Business Coach

1Department of Health and Human Services Administration on Aging
2Centers for Medicare and Medicaid Sevices (CMS)

Author's Bio: 

Nora Wellington, is a Licensed Nursing Home Administrator by profession. As a consultant she develops easy-to-follow monitoring tools and assists long term care staff with regulatory compliance and survey preparedness. She is author of LTC books on the federal F-tags. She is a business coach.
Nora Wellington also works with the consumer community regarding the long term health care system.