CHAPTER 294

Long-Term Care

The prospect of needing long-term care services concerns many older people. The likelihood of needing long-term care increases greatly as people age. Older people are more likely to develop chronic disorders and to have problems functioning. Learning about the many types of long-term care can help people choose the right time and place for this care. How long care is needed varies from weeks to years to indefinitely.

The focus of long-term care is on helping people function. It helps them do the activities necessary to care for themselves and to live as independently as possible. These activities include basic daily activities (such as eating, dressing, bathing, grooming, and walking) and other activities (such as shopping, balancing a checkbook, doing laundry, and cleaning). Long-term care usually includes help with health care. Most long-term care facilities also provide social and recreational activities.

Many people have their first experience with longterm care after a hospital stay. During an illness or after an injury, many older people lose some or all of the ability to care for themselves. Thus, although they may be well enough to leave the hospital, they may need to go to a long-term care facility for rehabilitation and recovery. This move can be physically and psychologically demanding. People have to adjust to many new faces and to new routines for sleeping, bathing, dressing, eating, and other daily activities. The move happens quickly, with little time to adjust.

Most people associate long-term care with a change in residence:

To the home of a family member

To a retirement community

To an assisted living community

To a board-and-care facility

To a life-care community

To a nursing home

However, only one third of older people who receive long-term care live in an institutional setting. The others receive care in their own home or in the home of a family member. People who receive care in institutions are usually those who have more physical and thinking (cognitive) problems, less social support from family members and friends, or both.

What type of arrangement is possible depends partly on a person’s needs (medical, functional, social, and emotional). However, it also depends on a person’s preference, finances, and social support (for example, family members’ willingness and ability to help). One person may be able to live at home with the help of a spouse. Another person with similar problems but without family support may need to go to a nursing home.

After the type of arrangement needed is determined, a particular facility must be carefully chosen. Within each type, facilities differ considerably in environment, services (including health care), activities, living arrangements, and rules. Sometimes the difference is simply a matter of what people can afford, but even within a price range, quality varies.

Care in the Home

Care in the home is usually provided by family members, friends, or both. If needed, health care practitioners, such as visiting nurses, therapists, and home health aides, may come to the home to provide additional care. Home care is often coordinated by a community health agency after a period of acute hospitalization. Medicare provides time-limited coverage for services that are classified as skilled, such as wound care or the monitoring of active illnesses such as heart failure or diabetes. When people no longer need skilled care, they are usually responsible for the costs of any further nursing care. Long-term care insurance or Medicaid (for people who qualify) may cover home care services. Veterans may also qualify for home care services depending on their needs and disability rating.

TYPES OF LONG-TERM CARE

Sometimes the primary doctor coordinates a team of health care practitioners who work together to provide better care for people living at home with a chronic disorder or disability. This arrangement is called a patient-centered home.

PACE: The program for all-inclusive care for the elderly (PACE) is a benefit provided under Medicare and Medicaid (see page 1916). This program is available (only in certain areas of the United States) to people who are at least 55 years old and who meet their state’s standards for requiring care in a nursing home. Services provided by the PACE program allow nearly all participants to live at home, although nursing home care is provided if needed.

Delaying the Need for a Long-Term Care Facility

The idea of going to a long-term care facility, particularly a nursing home, does not appeal to most people. The following problems are common reasons for entering a long-term care facility. However, sometimes problems can be solved, and the need for a long-term care facility can be delayed or avoided.

Urinary incontinence: People with urinary incontinence may be hard to care for at home. However, urinary incontinence may be caused by a disorder that can be treated. Treating the disorder may cure the incontinence. People with urinary incontinence, their family members, or their caregivers should talk with a doctor to find out whether treatment is possible.

Problems with doing daily activities: Certain devices can help people function better. A physical or occupational therapist or a home health nurse can observe people in their home and can sometimes help them choose appropriate devices that will enable them to continue to function safely at home.

Dementia: Taking care of people with dementia is difficult and frustrating. However, family members can learn ways of dealing with the behavior. For example, to deal with wandering, family members can place an identification bracelet on the person or purchase or rent a monitoring device. Learning more about how to care for people with dementia may delay the need for a long-term care facility.

Caregiver burnout: Strongly motivated family members can usually provide elaborate and detailed care. However, providing such care can wear them out physically and emotionally. Talking with health care practitioners can help. They can provide information about caregiving support groups and about groups that provide temporary (respite) care.

PACE involves an interdisciplinary team including doctors, nurses, physical and occupational therapists, social workers, dieticians, and drivers. The services are typically provided in an adult day health center and are available every day. The program provides transportation to the center. Some services may be provided in the home.

The Department of Health and Human Services web site explains PACE and provides an up-to-date list of participating health care practitioners.

Retirement Communities

Retirement communities are designed for people who can live independently but who need or want some help, mainly with caring for a home. Some older people choose to move to a retirement community before they need additional help. They may move because they do not want the responsibility of maintaining a large house and yard or because they have become lonely or isolated.

Retirement communities consist of a group of apartments, townhouses, or detached homes. These communities provide some services, such as transportation, entertainment facilities, some on-site nursing services, community meals, laundry services, and house cleaning and maintenance. Such services enable older people who are reasonably well to live independently. Retirement communities may arrange group activities, such as trips, game nights, or lectures by guest speakers. Some have recreational facilities, such as swimming pools and golf courses. The homes are usually designed for older people. For example, they may have only one floor. Retirement communities enable some people to postpone a move to a facility that provides more intensive long-term care.

Some retirement communities are part of a life-care community (see page 1920). Life-care communities provide as much care as people need for the rest of their life.

Because retirement communities vary so much, people should ask questions to make sure the community they are considering is suitable for them.

Is there an entrance fee in addition to the monthly fee? Which services, activities, and amenities are included in the monthly fee?

What services, activities, and amenities are available? Is there a bank, beauty salon, post office, or general store? Is transportation readily available for trips to local shopping areas, doctors’ offices, and other health care facilities? What social and physical activities are available?

What is the minimum age to live in the community?

Are the facilities well maintained? Are the living units and their setting pleasant? Is there enough parking?

Are there service people to help?

Are meals provided?

Financial Issues: People may rent or purchase their residence in retirement communities often in a condominium-type arrangement. Obtaining financing and conducting the sale or transfer of property are done as with any other private residence. When personal care services are needed, they are usually paid for privately or with long-term care insurance.

Assisted Living Communities

Assisted living communities are designed for people who can care for themselves if they have some help with daily activities. These communities can help older people who have problems with memory, who get confused, or who have physical problems. Some communities have special units for people with dementia where residents can be closely monitored. Assisted living communities may also provide help for couples who wish to continue to live together even though one or both partners require more assistance than the other can provide.

Assisted living communities vary from small and homey to large and elaborate. Residents usually have their own apartment or a bedroom with a bathroom. These communities provide meals, help with daily activities (including personal care), and offer some social and recreational activities. Residents can choose which activities and services they want. Most assisted living communities provide some health care, including 24-hour supervision if needed. Doctors and nurses may visit regularly, and physical therapists may be available. Services and activities offered vary greatly from community to community. Also, regulations for these communities differ from state to state.

When people need intensive treatment, they may have to move to another facility, such as a hospital or rehabilitation center. They may move back to the assisted living community if they are able. But to hold their living space while they are gone, they must continue to pay for it.

People who move to assisted living communities usually need help with daily activities because they have some health problems that limit their ability to function independently. Assisted living communities prefer people who do not need help moving (transferring), for example, from bed to chair. But even when people become relatively impaired, they may be able to stay in these communities because of the help provided. How much help is provided varies considerably from community to community. Generally, an assisted living community is not an alternative to a nursing home. More often, it is a transitional living arrangement that is followed by a move to a nursing home.

Financial Issues: Assisted living communities are usually less expensive than nursing homes because they provide less care. However, they can still be expensive. Although Medicare does not pay for assisted living communities, Medicaid sometimes provides financial support. Many long-term care insurance policies help pay for a significant part of assisted living costs.

Board-and-Care Facilities

Typically, board-and-care facilities are similar to assisted living communities. They are for people who need some help, particularly with personal care. Board-and-care facilities, sometimes also called rest homes, adult care homes, or personal care homes, provide a room, meals, help with daily activities, and occasionally some health care. In board-and-care facilities, people usually live in rooms, as in a college dormitory, rather than in apartments. Some facilities have a very homelike atmosphere.

Board-and-care facilities are not as closely regulated as nursing homes or even some assisted living communities. Many provide good care, but some do not. Some facilities attempt to care for people with very different needs. For example, younger people, many of whom have an untreated or a poorly treated mental disorder, live side by side with older people who do not have a mental disorder. In such an arrangement, the older people may feel uncomfortable or awkward.

Older people and their family members must carefully evaluate a board-and-care facility. They should ask what the facility does and does not provide and make sure that the staff members can meet the needs of the residents and treat them well.

Financial Issues: Typically, the cost of board-and-care facilities is modest when compared with other assisted living options or nursing homes. However, the cost varies widely, from several hundred dollars a month to several thousand, and is paid for with private funds or through Medicaid (for people who qualify).

Did You Know…

Retirement and assisted living communities vary widely in the services and amenities they offer.

Life-Care Communities

Life-care communities (also called continuing care retirement communities) are for older people who want to move only once, to a place that will provide as much care as they need for the rest of their life. These communities guarantee that residents are cared for within the community regardless of their health. Life-care communities may also provide help for couples who wish to continue to live together or at least near one another even though one partner requires more assistance than the other can provide.

People may begin by living in a house or an apartment. But later, if health deteriorates, people can move to an assisted living community and finally to a nursing home, all on the same property. Life-care communities offer the security of continued care in one location, without having to move very far.

Financial Issues: Many life-care communities are expensive. Some require a large deposit as well as monthly payments and fees for additional services. Sometimes there is an upper limit (cap) for monthly payments and fees. But in many communities, costs increase when the level of services needed increases.

Medicare and Medicaid usually do not pay for residence in a life-care community but may help pay for skilled nursing care when it is needed. Long-term care insurance may provide reimbursement for monthly fees as well as for personal care services, whether provided in an independent living, an assisted living, or a nursing home setting within the life-care community.

Nursing Homes

Nursing homes are for people who need help with health care for chronic conditions but do not need to be hospitalized. The decision to move to a nursing home may be triggered by a change in circumstances. A disorder may suddenly worsen, or an injury may occur. Function may deteriorate suddenly or slowly but steadily. Family circumstances may change, making care at home difficult.

“Nursing home” is sometimes used as a general term for any long-term care facility. But it specifically refers to facilities licensed by the state that can provide both basic and skilled nursing care. “Skilled” indicates that some of the care included can be provided only by trained health care practitioners. “Nursing” indicates that nurses provide most of the care in the facility. Nurses give residents their drugs, monitor disorders, supervise treatments, consult with doctors about care, and organize most of the activities in the nursing home. The nursing staff includes registered nurses (the most highly trained), licensed practical nurses, nursing assistants, and a director of nursing, who oversees nursing care in the home.

Each nursing home also has a medical director, a doctor who oversees the medical care. In some nursing homes, the medical director is the only doctor who provides medical care. But in most nursing homes, several doctors, often working with nurse practitioners or physician assistants, provide care. Sometimes a doctor who has been taking care of the person before the move continues to provide care. Otherwise, the person chooses or is assigned a doctor. According to regulations, a doctor, nurse practitioner, or physician assistant must see every nursing home resident at least once every other month. Many residents see a health care practitioner more often because they need treatment for chronic disorders or they develop additional disorders, such as infections or confusion. Also, nurses may call a doctor to discuss problems and changes in treatments.

Many nursing homes provide other health care services, such as oxygen treatments and drugs or fluids given by vein (intravenous therapies). Almost all nursing homes provide rehabilitation, including physical, occupational, respiratory, and speech therapy. Many people are admitted to nursing homes specifically for rehabilitation, then are discharged to their home after several weeks.

Dentists and medical specialists, such as podiatrists, ophthalmologists, neurologists, or psychiatrists, may examine and treat residents on site. But most often, people with a specific problem have to be transported to a different site for treatment.

Some nursing homes have special units for people with dementia. These units are staffed by specially trained nurses. Many nursing homes provide hospice care for people who are dying.

Almost all nursing homes have a social worker on staff. Social workers help residents adjust to the home. They identify residents who are lonely and withdrawn and help residents, staff members, and family members communicate with each other. They may also help residents and family members make financial arrangements. For example, they may show family members how to apply for Medicare and Medicaid coverage.

Social workers often help coordinate the care provided by the different health care practitioners in a nursing home. These practitioners work together to enable each resident to function as well as possible and to have the best possible quality of life.

Although some nursing homes resemble hospitals rather than homes, many nursing homes are trying to change from a more institutional environment with rules and regulations to a more homelike environment that gives residents more control over their care. Some nursing homes permit pets, encourage residents to maintain existing hobbies or develop new ones, and provide many opportunities for contact between residents and people of all ages who live in the community around the nursing home. Providing this kind of environment is complicated because the residents of nursing homes are usually sick and frail. Many nursing homes have dining rooms, recreation rooms, beauty salons, patios, and gardens. All nursing homes provide recreational and social activities.

Nursing homes are highly regulated by the government. State health departments conduct surveys and inspections to monitor and evaluate quality in nursing homes. A copy of this evaluation is kept at the nursing home and can be reviewed by residents and their family members. Nursing homes also use other programs that monitor and help improve the quality of care.

Even though nursing homes are monitored and regulated by government, they vary considerably in quality, personality, and cost. So people or family members who are interested in a nursing home should try to get as much information as possible. They can ask the administrator of the nursing home to see the state’s evaluation of the home. Similar information is available on the Internet. One evaluation called the Quality Indicator Report looks at how well a nursing home handles specific problems. These problems commonly develop or worsen in residents of nursing homes but can be prevented with attentive care. They include a decline in the ability to do daily activities, undernutrition, weight loss, pressure sores, incontinence, constipation, infections, depression, and use of too many drugs. Whether these evaluations are valid is debated. Nonetheless, they provide information that can help people better compare nursing homes.

Choosing a Nursing Home

ENVIRONMENT

Is the nursing home attractive, friendly, homelike, and relaxed?

Are there any unpleasant odors? Is the nursing home clean and well maintained?

Are the dining room and other common areas bright, cheery, and pleasant?

How is the noise level in common areas monitored to prevent it from disturbing residents whose rooms are nearby?

Are there safe, accessible walking paths on the grounds?

Is there a garden or patio?

Does the nursing home have appropriate safety devices, such as fire alarms and sprinklers? What are the plans for emergencies, such as fires?

RESIDENTS

Is the nursing home accepting new residents?

Do the residents seem reasonably happy and active, or are they wandering aimlessly or sitting and doing nothing?

Are the residents clean and appropriately dressed?

Are any of the residents restrained?

STAFF MEMBERS

Do the staff members treat the residents with respect, patience, and friendliness?

Are staff members experienced and qualified?

Do the residents see the same staff members on a daily basis?

Is there a high turnover in staff members?

Do staff members respond to requests for help in a reasonable amount of time?

What is the ratio of staff members to residents?

ROOMS

Is there enough storage or closet space?

Are the residents’ rooms bright and cheery?

Are private rooms available? How are roommates selected?

How are private items stored or secured?

Can residents have their own telephone and television?

Is water available and within reach for residents?

Can residents decorate their rooms with personal items?

Are there safety features, such as grab bars and pull cords (to call for help)?

Can residents keep food in their rooms?

MEALS

What time are meals served?

Are meals served hot?

Are snacks available between meals?

Can residents get from their room to the dining area easily?

Can meals be provided in a resident’s room if needed?

Are the meals tasty and nutritious?

How are special dining or menu requests handled? Are choices available at meals?

Can the nursing home provide special diets when needed? Is there an additional cost?

Are staff members available to help with feeding during meals?

Is there a registered dietician on staff?

HEALTH CARE

Can residents keep their own doctor rather than use the nursing home’s doctor?

How often is the nursing home’s doctor available, and where?

Does the nursing home have an arrangement with a nearby hospital?

If residents have to be hospitalized, will a bed be available afterward?

Are other health care practitioners (such as dentists, podiatrists, physical therapists, optometrists, counselors, and social workers) available?

Are therapy programs (such as physical, occupational, or speech therapy) provided?

Does the nursing home have special programs for people who have such disorders as Alzheimer’s disease or HIV infection?

What services does the nursing home provide for residents with a terminal disorder?

How are prescription drugs ordered and given to residents? How is the use of drugs monitored?

What is the policy on residents keeping nonprescription drugs?

Are residents and family members encouraged to participate in developing a plan for care?

SERVICES

Is help with daily dental care provided?

How is personal laundry done?

Is reading material available?

VISITING

Is the nursing home conveniently located for frequent visits by family members and friends?

Can family members visit any time?

ACTIVITIES

What activities are offered?

Are residents encouraged to participate? How are the residents informed of the activities?

Is there an activity director?

Does participation in activities cost extra?

Are there rooms for other activities, such as a TV or game room?

Are religious services held on the premises?

COSTS

Are all the services that residents need covered in the basic charge?

What services (such as beauty salons or laundry) cost extra, and what is the cost?

RESIDENTS’ RIGHTS AND PRIVACY

Does the nursing home have an active resident or family council or both?

Are residents allowed to go in and out as they please?

Are restraints used? When and why?

Is there a lock on the door to private rooms? Do staff members knock before entering?

Can married couples live together? Are they given privacy?

Are the sexual needs of residents respected?

How often are residents bathed? Can residents have a bath or shower whenever they want? Are bath and shower areas kept warm enough? How much privacy is provided in these areas?

Are pets allowed? Can visitors bring pets?

Can residents keep food or alcohol in their rooms?

What is the nursing home’s policy on lost or missing valuables?

Who contacts family members in case of an emergency?

If residents wish to leave, what are the policies on giving notice or refunds?

Other important questions to ask the administrator include whether the nursing home is certified to provide Medicare and Medicaid coverage, how often care of residents is reviewed, what type of medical care is available, and whether residents and family members are included in the review of care. For some questions, the administrator may direct people to the nursing home’s medical director or director of nursing.

Did You Know…

State departments of health regularly evaluate nursing homes, and nursing homes must make these evaluations available to residents and their family members.

Talking to other people who are familiar with the home is helpful. Such people include long-term care ombudsmen (who visit nursing homes and investigate complaints), doctors, clergy, family members of residents, residents, and employees of the nursing home. Some homes have resident organizations, consisting of family members and friends of residents who meet to discuss issues that come up in the nursing home. These organizations can provide family members of prospective residents with helpful information. However, making an unscheduled visit to a home for several hours is usually the best way to determine whether the quality of services is good and whether the home will be a good place for a loved one.

Financial Issues: In the United States, Medicaid and private funds pay for most nursing home care. Medicare pays for rehabilitative care for a short time in certified nursing homes if skilled care is needed daily after a hospital stay lasting 3 days or more. People are eligible for up to 100 days of Medicare coverage as long as they show continued improvement. Medicare pays all costs for 20 days, then requires a co-payment for the remaining 80 days. After 100 days, payment is either with private funds or, if the person is qualified, through Medicaid.