Long-term residential care
Date Posted: January 1, 2007
In-Depth Report
Long-term residential care
There may come a time when it is too difficult for you to care for your loved one at home. As the disease progresses, your job will become increasingly difficult — despite a variety of community services — to the point where long-term residential care may be the most responsible option.
Making the decision
As you come to terms with residential care, you may grapple with feelings of guilt that you're abandoning the person. You may assume incorrectly that people who wind up in nursing homes were discarded by their families. But the truth is just the opposite. Most families exhaust every other option before resorting to this type of arrangement, and, contrary to popular belief, most families do stay connected to the individual and visit often. You can also draw comfort in knowing that there are an increasing number of good programs that specialize in care and treatment of people with Alzheimer's disease.
Better care for people with Alzheimer's disease
Residential care facilities with programs for people with dementia have special features that make life easier for them. For instance, many newer facilities are designed to limit noise and have enhanced lighting to help reduce the effects of sundowning. Ample walking space accommodates wandering and diminishes the sense of being locked in. Outdoor courtyards may be designed with natural barriers, such as shrubs, so people with Alzheimer's disease feel as through they have free rein.
To give residents a greater sense of control, there may be cues to help orient them throughout the facility. Hallways may be color-coded, or "memory boxes," showing pictures or other mementos, may be affixed to patients' doors to help them find their rooms.
Many of these facilities strive to keep people with Alzheimer's active and offer a wide array of activities that involve all residents at different levels of ability. The activities should be set up so they provide some meaning and enjoyment to the individual without too much stimulation or pressure to learn. Some examples include participating in arts and crafts projects, going through family photographs, engaging in appropriate exercise, singing, dancing, or listening to music. Even doing chores, such as folding laundry, may be enjoyable for some but meaningless to others.
There has also been a shift in the general philosophy of caring for people with dementia. In the past, the general consensus was that they should be continually oriented to reality. For instance, if a person talked about visiting a sister who had died, the caregiver would remind the person what year it was and that the relative wasn't alive. Experts recommended responses like "No, I'm not your daughter, I'm your nurse."
Experts now believe that these efforts are futile and only frustrate the individual. Today, the preferred approach is to validate the person's feelings. For instance, responses like "You must really love her" to a man who talks about his dead wife, rather than, "She died 10 years ago," fosters emotional well-being. Repeated validation may also curb some behavior problems associated with frustration.
Resurrecting the self
There is also more of an attempt to resurrect what's left of the person's "self." In high-quality programs, caregivers try to understand each person's past interests and plan activities accordingly. If, for example, a person loved to dance, he or she may still derive considerable enjoyment from music and dance activities at a center.
In one case involving someone who had been a newspaper reporter most of his life, his caregivers set up a makeshift newsroom with a typewriter and assigned him the task of writing a newsletter for the center. He was able to enjoy this until typing became too frustrating. Although his caregivers eventually removed the typewriter, they still reinforced the idea that he was working in a newsroom. In another case, a caregiver arranged for several former stamp collectors in the assisted-living facility to see a stamp exhibit that was in town. Despite their disease, the caregiver said they seemed to thoroughly enjoy the experience.
Some art museums around the country have begun offering tours and art therapy programs for people in Alzheimer's care facilities. The hope is that looking at paintings or creating artwork can somehow reach these people emotionally in ways that other experiences no longer can. Some caregivers report that people with Alzheimer's disease become less agitated and more sociable during a museum tour. In addition, some people with Alzheimer's disease display startling abilities to draw, paint, and sculpt, even as they lose their memory and other cognitive functions. Although scientists know very little about the relationship between art and Alzheimer's, the subject was explored at a National Institute on Aging workshop in 2004 on creativity and aging.
Keep in mind that no matter how good the dementia care is in a facility, it will not reverse the tragic course that Alzheimer's disease takes. But these programs report positive changes in residents' social behavior, and health care experts believe that keeping them active can help slow their decline, although this hasn't been proven. Activity certainly helps maintain physical well-being and may help prevent other illnesses and infections.
Fast factAbout half of all individuals living in nursing homes have Alzheimer's disease or another dementia. |
Types of facilities
Four general types of living arrangements are available for people with more advanced Alzheimer's disease. Because many high-quality centers have waiting lists, it's important to investigate a variety of options early in your planning, even if you're not yet ready to place your family member outside the home (see "Evaluating a long-term care facility").
Evaluating a long-term care facilityKeep in mind that not all specialized Alzheimer's care is equal. When you visit a center, try to determine what makes it unique. For up-to-date information on the wide variety of options available and how to evaluate them, contact the Alzheimer's Association and ask for its guide (see "Resources"). When you visit a facility, ask plenty of questions, such as these: How is the program geared specifically for people with Alzheimer's disease? Are the caregivers trained in the treatment of Alzheimer's? Is it a homelike environment? Are residents engaged in meaningful activities? Does the facility incorporate design features that can be helpful to those with Alzheimer's, such as enhanced lighting, color-coded hallways, and plenty of walking room? Is the environment safe? How secure is it for people who wander? How would an upset resident be handled? How many people live there? What's the ratio of staff members to residents? Can medical care be given on site if needed? Who provides it? Skilled nurses? Visiting physicians? What personal items can the resident bring? Are skilled professionals — including registered nurses, licensed practical nurses, and certified nursing assistants — on duty at all times? How long and often may family members visit? What's the cost? Does the facility require you to pay privately? If the patient needs to change to Medicaid funding after a few years, will he or she be able to remain at the facility? Under what circumstances would a resident be required to leave? |
Because the average cost of long-term care is $34,860 a year for an assisted-living facility and $74,095 a year for a private room in a nursing home, you'll have to investigate payment options. Aside from Medicaid, there is no national government program that funds long-term residential care. Medicaid is administered at the state level and covers only those who are impoverished. It's not uncommon for people to pay for their own care, often until they use up their resources and then become eligible for Medicaid. In some instances, usually if the person with Alzheimer's is also suffering from an acute illness, Medicare may cover a short-term living arrangement for up to 150 days. Your local Alzheimer's Association chapter is an excellent place to start identifying possible sources of assistance (see "Resources").
Nursing homes
For years, nursing homes were the only choice for people with Alzheimer's disease, but these facilities often don't specifically meet their needs. Nursing homes were created for people who were not cognitively impaired but required some functional assistance because of medical problems. These facilities are typically hospital-like and don't provide the general supervision and space that enable a person with Alzheimer's to move about freely.
Special care units (SCUs)
Many nursing homes have organized dementia care units that are located in a separate wing of the facility. These special care units (SCUs) often offer patients with dementia homelike environments and activities and programs conducted by specially trained providers.
Ideally, dementia programs include small-group activities geared toward different levels of ability, short programs, and activities arranged by functional or cognitive ability levels. These facilities may also include special design features, such as secured exits, small dining rooms, single-occupancy rooms, or special indoor or outdoor areas for wandering. Currently, however, the care provided in such programs varies widely because there's no standard definition of what constitutes an SCU. Therefore, if you're considering this type of long-term residential care, visit the facility to find out what services and programs it offers.
Assisted-living facilities
These are typically large complexes with apartments or townhouse units that offer communal dining, assistance with personal care, monitoring of medication, and housekeeping services. Many offer special residences for people with dementia and features similar to those offered in special care units, without the level of ongoing medical care that's available at a nursing home.
Retirement communities
Sometimes called "life care centers," retirement communities offer several levels of services so that as the needs of the resident changes, he or she moves within the complex to receive more specialized care.
Review Date: 2007-01-01
Harvard Medical School does not endorse products or services.
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