I recently placed my husband in a special care unit (SCU) at a new, nicely decorated, and supposedly state-of-the-art facility only 5 minutes from home. From the beginning, it was very difficult to get specifics about the staffing. At a meeting of the Family Council formed after the facility had been in operation for approximately 3 months, I learned that Nebraska SCUs are under the same rules and regulations as assisted living facilities. I was shocked because in the early 1990s two other faculty members and I had conducted a survey of Nebraska nursing homes that were opening SCUs to see what had been modified and what was offered (Sand, Yeaworth, & McCabe, 1992). So I had assumed SCUs remained under nursing home regulations. Because there was a skilled nursing unit as part of the facility where I placed my husband, it never occurred to me that the SCU would not be under skilled nursing regulations.
As most nurses are aware, SCUs for individuals with Alzheimer's disease (AD) originated in nursing homes with the idea that instead of using physical and chemical restraints on individuals with AD to keep them from wandering and disturbing other patients and their belongings, there would be a locked unit or wing where these individuals could wander, preferably with outdoor access. The SCU would have more controlled stimuli, planned activities, and staff with special preparation in caring for individuals with AD. When I examined the State of Nebraska Roster of Nursing Facilities and Hospitals With Long-Term Care Units (licensed as of November 16, 1999) (Nebraska Health and Human Services System, 1999b) and the State of Nebraska Roster of Assisted Living Facilities (licensed as of November 22, 1999) (Nebraska Health and Human Services System, 1999c), I found that 51 of the former and 1 5 of the latter had AD units.
The Nebraska Department of Health and Human Services (1998) Regulation and Licensure states in their definition of assisted living that "Assisted living promotes resident self-direction and participation in decisions which emphasize independence, individuality, privacy, and residential surroundings" (p. 1). It is possible that individuals in the early to middle stages of dementia may exercise that self-direction, but 70% of individuals with dementia are cared for in their own or a family member's home (Kelley, Buckwalter, & Maas, 1999). Both the strong sense of moral obligation to their family member and the cost of SCUs (e.g., $3,000 to $4,000 a month) are reasons for delaying institutional long-term care. It is a rare individual who is placed while in the early or early-middle stage of AD. Thus, while autonomy, individuality, privacy, and residential surroundings are not to be discounted, by the time individuals with dementia are admitted to SCUs, they should not be considered individuals who can direct their own care. In fact, they have difficulty expressing what is bothering them when they have pain or discomfort. They often cannot remember who did what to or for them, whether they had a bath, or if they ate and what they had to eat.
Because most individuals with dementia are older, they are likely to have multiple chronic illnesses and be taking medications for dementia like donepezil (Aricept), tacrine (Cognex), and selective serotonin reuptake inhibitors and medications such as furosemide (Lasix), digoxin (Lanoxin), or tolterodine (Detrol). However, Nebraska assisted living regulations state that "Provision of medications may be provided by the facility as requested by the resident and in accordance with licensed health care professional statutes and the statutes governing medication provision by unlicensed personnel" (Nebraska Health and Human Services System, 1999c). It is unlikely a resident with dementia will remember to "request" regularly scheduled medications because they will not remember they are taking them. In addition, the State of Nebraska Statutes ReUting to Medication Aides (Nebraska Health and Human Services System, 1999a) states "Administration of medication includes. ..observing, monitoring, reporting, and otherwise taking appropriate actions regarding desired effects, side effects, interactions, and contraindications associated with the medication" (p. 5). Does any RN believe all this can be learned about current complex drug regimens in a 20-hour course, which is what the same statutes require for a medication aide providing services in an assisted living facility? However, "a medication aide providing services in a nursing home or an intermediate care facility for the mentally retarded shall be required to have completed a 40-hour course" (Nebraska Health and Human Services System, 1999a, p. 5). Does it really take more knowledge and training to provide medication to a young, healthy individual who is mentally retarded than to a frail elderly individual with dementia?
One RN who teaches these medication aide courses said she was perfectly comfortable with them because she only taught the aides the proper technique for handling and administering medications, and the aide would be under the supervision of an RN for the observation and monitoring of and knowledge about desired effects, side effects, and interactions. Yet, an RN with the corporation which operates the facility in which my husband is a resident stated the corporation has 135 SCUs across the country, and all are operated under assisted living regulations. She further told the Family Council that we were fortunate that there were two experienced licensed practical nurses (LPNs) on the staff of the SCU in this facility because assisted living regulations do not require there be any licensed personnel for an SCU. When nurses and nursing organizations yield to the pressure to delegate more nursing acts, the safety issues become cloudy and the loopholes for the for-profit facilities increase.
Caregivers need to know special communication techniques. Individuals with dementia often cannot find the right words, retain the thoughts they wish to express, or fully process what someone is trying to communicate to them. This can become an issue related to how to cue or assist them with their activities of daily living. Also, caregivers need an understanding of the behavior of individuals with dementia and how to use behavioral techniques to modify the behavior when it is problematic. Training and managing staff, evaluating the physical and mental status of the individual with dementia, and supervising medication regimens amount to skilled care, although it is a different kind of skilled care than what usually is envisioned in most skilled care facilities. An RN with special preparation and experience in caring for individuals with dementia should have responsibility for such a unit.
There is a set of Nebraska statutes pertaining to AD special care disclosure (Nebraska Health and Human Services System, 1997) which indicates the facility must disclose staff training and continuing education practices to the Nebraska Department of Health and Human Services Regulation and Licensure and to any individual seeking placement of someone within the unit. From inquiries of gerontological nurses in other states, I learned Arkansas and North Carolina recently passed such disclosure laws. North Carolina's law is more than disclosure. It addresses minimum medication administration standards and minimum training and education qualifications for supervisors. These disclosure acts have shortcomings. I did not have such disclosure, and I found that most of the members of the Family Council were surprised to learn that the unit director was not an RN. Even if there is a disclosure, family members may have little choice because currently there is a waiting list for most SCUs for AD patients in Nebraska. Frequently, there is a crisis event that precipitates placement, so family members may not be able to wait for a place in a facility that requires RN supervision. Also, many Iaypeople have no understanding of the differences in education of an RN and LPN, let alone the differences in preparation among RNs. As long as RNs are not required to provide leadership for the care on these units, some of our most vulnerable citizens are being placed in a setting in which they are supposed to be making decisions they no longer are capable of making. Families are being led to believe these units provide "special care for people with Alzheimer's and related memory disorders," and they often are paying skilled care prices for assisted living services.
The nursing profession lost ground and some leadership in acute care settings with the advent of cost cutting and downsizing. Most long-term care whether in SCUs, home health, or nursing home is about education, symptom management, health maintenance, and supervision of nursing care. Nurses should be attuned to the fact that more of the care in these settings, usually called nursing facilities, is being provided by individuals with minimal education and training. Do you know what the statutes for SCUs, nursing homes, and home health require in your state? If nurses really are advocates for people receiving long-term care, they need to be certain that advocacy extends to policy and regulation.
- Kelley, L.S., Buckwalter, K.C., & Maas, M. L. (1999) Access to health care resources for family caregivers of elderly persons with dementia. Nursing Outlook, 47(1), 8-14.
- Nebraska Health and Human Services System. (1997). State of Nebraska statutes relating to Alzheimer's spedai care disclosure act. Lincoln, NE: Nebraska Department of Health and Human Services Regulation and Licensure.
- Nebraska Health and Human Services System. (1998). Title 175, Chapter 4: Regulations governing licensure ofassisted-living facilities. Lincoln, NE: Nebraska Department of Health and Human Services Regulation and Licensure.
- Nebraska Health and Human Services System. (1999a). State of Nebraska statutes refaing to medication aides. Regulations governing the provision of mediations by medication aides and other unlicensed persons. Reguhtions governing the medication aide registry. Lincoln, NE: Nebraska Department of Health and Human Services Regulation and Licensure.
- Nebraska Health and Human Services System. (1999b). State of Nebraska roster of nursing facilities and hospitals with long term care units. Lincoln, NE: Nebraska Department of Health and Human Services Regulation and Licensure.
- Nebraska Health and Human Services System. (1999c). State of Nebraska roster of assisted-living facilities. Lincoln, NE: Nebraska Department of Health and Human Services Regulation and Licensure.
- Sand, B.J., Yeaworth, R.C., & McCabe, B.W. (1992). Alzheimer's disease: Special care units in long-term care facilities. Journal of Gerontological Nursing, 18(3), 28-34.