Introduction

Alzheimer Special Care Units (SCUs) exist to better meet dementia residents' needs and to protect residents without dementia in nursing homes and residential care facilities. Special care unit growth has become a challenge for Alzheimer advocates concerned about the quality of long-term care.

Nearly 60 percent of nursing home residents have Alzheimer's or another dementia. In recent years the number of nursing homes that have developed SCUs designed to serve residents with Alzheimer's disease has proliferated. Special care dementia units now represent one of the fastest growing parts of the nursing home business.

Until recently, facilities did not have to meet any specific standards, beyond the nursing home regulations and standards to which all nursing homes are held, in order to promote themselves as being a special care unit.

Many facilities did not offer the same services or a comparable level of care, making it impossible for families of Alzheimer patients to determine a correct placement for their loved one. Often, the term "special care unit" was used as a marketing scheme where the only distinguishing factor was that the unit was locked.

Our position

The Alzheimer's Association supports the enactment of state legislation regarding the disclosure of claims made by facilities relative to their Alzheimer special care units.

Such disclosure requirements should conform to the Key Elements of Dementia Care and include proper enforcement and monitoring mechanisms. In addition, such legislation should include provisions and resources for consumer education and training of surveyors and ombudsman.

What we are doing

A 1993 study of SCUs by the Alzheimer's Association substantiated the concern that some facilities were offering little difference in the care provided in SCUs compared to more traditional nursing home settings.

The study found that:

• Extra costs of the units were not disclosed prior to admission 39 percent of the time.

• Twenty-nine percent of families did not know if they were paying more for special care than for standard nursing home care.

• Ombudsmen and state surveyors expressed concern about the availability of specialized activities, numbers of staff on duty, staff training, involuntary seclusion or confinement of residents, and the ability of the units to manage problem behaviors.

In the years since this study was commissioned, Alzheimer advocates have worked with state lawmakers to address these concerns. This work has resulted in the enactment of special care unit disclosure laws in 23 states. SCU disclosure laws require nursing homes and other health care providers to disclose what their special services include.

The Association works with legislators to enact model legislation to hold facilities with Alzheimer special care units accountable to prospective residents, their families and state licensing agencies.

The eight areas of care outlined in the model legislation closely parallel the goals for specialized care identified in the Alzheimer Association's Key Elements of Dementia Care.

Resources

For more information and tools for advocates, see Resources.