Coalition to change assisted living regulations governing special units for dementia patients

Abstract

Nursing homes, retirement villages, and assisted living facilities are opening increasing numbers of special care units (SCUs) for persons with Alzheimer's disease (AD) and related dementias. SCUs for persons with AD originated in nursing homes, most of which operated under skilled nursing regulations. The idea was that instead of using physical and chemical restraints on persons with AD to keep them from wandering and disturbing other patients and their belongings, there would be a locked unit or wing. There these persons could wander, preferably with outdoor access. The SCU would have more controlled stimuli and planned activities. The staff would have special preparation in caring for persons with AD. Most of the new units are nicely decorated, have homelike features, and allow persons to furnish their room with their own belongings. Whereas these features are nice options, most are operated under assisted living regulations which do not require that one licensed person be on a unit with 25 or more persons with middle-stage to late-middle-stage dementia. Most persons with dementia are older and likely to be taking not only medications for dementia like Aricept or Cognex, but also Lasix, Lanoxin, Detrol, or Glyburide. Yet, under assisted living regulations, their medications can be given by a medication aide with 20 hours of training, supposedly under the direction of the person receiving the drug, their family members, or the physician who ordered the medication. (The source of supposed supervision is most unclear in many instances.) Assisted living regulations require that pharmacists visit quarterly instead of monthly as in a skilled facility. Most patients in SCUs for dementia have spatial perception and balance difficulties that make them at risk for falls. They have difficulties expressing what is bothering them when they have pain or discomfort. They may not recognize family members, so male and female residents may seek comfort and affection from each other. They often cannot remember who did what to or for them, whether they had a bath, or whether they ate and what they had to eat. Nevertheless, assisted living regulations state that “assisted living promotes resident self-direction and participation in decisions which emphasize independence…. No assisted living facility shall admit or retain an individual who requires complex nursing interventions or whose condition or behavior is not stable or predictable.” Whereas many persons with early stage and early middle stage AD may live in an assisted living facility, especially if they have a spouse living with them, assisted living regulations do not fit for the special communication and behavior management techniques, the supervising of medications, the staff training and management, and the ongoing assessment of physical and mental status needed. An RN with special preparation and experience in caring for persons with dementia should have responsibility for such a unit. Licensed nursing personnel should be on each shift. Without advocacy and change in the philosophy that AD patients are “a priority” for increasing “occupancy and profit margins,” some of our most vulnerable citizens are being placed in settings in which they are supposed to be using judgment they no longer possess and making decisions they are no longer capable of making.