HD35 - Special Care Units in Dementia Long-Term Facilities

  • Published: 1993
  • Author: Department of Mental Health, Mental Retardation and Substance Abuse Services
  • Enabling Authority: House Joint Resolution 51 (Regular Session, 1992)

Executive Summary:
Over the past decade there has been a dramatic increase in the number of special care units for individuals with Alzheimer's disease and related disorders. These units have proliferated throughout the United States, despite a lack of consensus regarding their characteristics and possible effectiveness.

Ideally, special care is defined as the maximization of the functioning and quality of life of the individual with dementia by utilizing specially trained staff, specially adapted activities, and a supportive environment. Special care may be provided in special care units, special programs, and specialized services. Such programs and services can benefit families/caregivers who want the most appropriate care for the individual with dementia.

Many complex issues are involved in developing public policy regarding special care units. The lack of standards for these units means consumers have no assurances as to what, if any, special care a facility provides. Yet, premature governmental regulation could preclude creative innovations to special care, escalate cost, and would not guarantee improvements in care.

This report describes the current status of special care units, special programs, and specialized services in Virginia and other states. Prior to this study, there were no data to identify which facilities in Virginia provided special care to individuals with Alzheimer's disease or a related disorder. It was determined a survey questionnaire would be used to learn which facilities were providing special care, and what their characteristics were.

The survey questionnaire was developed by the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) and distributed to all nursing facilities (NFs), homes for adults (HFAs), adult day care centers (ADCCs) and hospitals, in the state for a total of 908 facilities. Approximately two-thirds of the facilities responded to the questionnaire. Of those responding, 34 (15%) of the NFs, 20 (3.8%) of the HFAs, 15 (37.5%) of the ADCCs, and four (3.3%) of the hospitals, indicated they offer special care in some form to individuals with dementia.

The survey results indicated the state has at least 73 facilities offering special care: 31 special care units, 22 special programs, and 20 facilities which offer specialized services for individuals with dementia. The survey revealed almost half of the special care programs in the state have been established since 1990. Also noteworthy was the fact that in addition to the 73 facilities that currently provide special care, 44 facilities reported they planned to develop a special care unit, a special program, or specialized services in the future. These results confirm the rapid growth of special care for persons with dementia in Virginia, a trend found throughout the United States.

It was also revealed there is great diversity among programs in costs, charges and staffing levels. The difference in costs for hospitals and NFs compared to HFAs is attributed to regulatory requirements for staffing, training, equipment and other health-related items. Much of the variation can be attributed to differences between the types of services and the facilities providing the services. For example, there was more consistency among programs concerning admission and discharge criteria, types of patient activities, programs, the extent of family involvement, procedures to control "disruptive behavior," and physical design of the unit. The wide range of characteristics among facilities providing special care in Virginia is similar to what has occurred throughout the country, according to a recent report by the U.S. Office of Technology Assessment.

The statewide survey of special care units, special programs, and specialized services represents an important first step in assessing the current status of special care in Virginia and in guiding the future course of public policy on this complex issue.

RECOMMENDATIONS

In response to the issues raised and deliberations of the special Care units study Committee and the Alzheimer's Disease and Related Disorders Commission, the following recommendations are offered:

STANDARDS/REGULATIONS: 1) state standards/regulations for special care units are not recommended at this time due to the lack of agreement among experts about what the particular features of a special care unit should be and the insufficiency of research-based data concerning the effectiveness of various program characteristics.

CONSUMER AWARENESS: 2) The Alzheimer's Disease and Related Disorders Commission and other interested individuals shall develop guidelines and other information such as a brochure regarding special care units, special programs and specialized services to assist and inform consumers in the evaluation and selection of a facility which provides special care. The brochure will include information regarding the state Ombudsman program under the auspices of the Department for the Aging.

"In order to protect and inform consumers, facilities which advertise or market special care units for individuals with dementia should disclose to consumers in writing specific information about how the unit is special. Information such as admission and discharge criteria, any additional staff training, environmental modifications, special programming, etc. should be described specifically. This disclosure would not in any way restrict what special care units could develop, it would, however, provide more complete information to consumers."

TRAINING/EDUCATION: 3) The Alzheimer's Disease and Related Disorders Commission in conjunction with the local chapters of the Alzheimer's Association and Long-Term Care provider organizations, pharmaceutical companies and other appropriate businesses, shall sponsor a statewide training conference, within the next 18 months, for professionals and paraprofessionals on the characteristics of Alzheimer's disease, current research, innovative approaches to specialized care, and interventions for maladaptive behavior and other relevant information.

4) The Alzheimer's Disease and Related Disorders Commission, in conjunction with local chapters of the Alzheimer's Association, shall develop a public/private partnership to provide training/education regarding special care units, special programs and specialized services to professionals, paraprofessionals, family members, caregivers, and the general public.

"The Education Committee of the Commission is currently developing a training module on the management of disruptive behavior for staff in nursing facilities and homes for adults. Additional topics for training will cover how to communicate with, and care for individuals with dementia."

DATABASE SYSTEM: 5) The DMHMRSAS shall maintain and expand a database for specialized dementia programs in Virginia using data from the recently completed survey on special care units, special programs, and specialized services.

6) The DMHMRSAS shall conduct a follow-up survey of special care in 1994 to obtain specific data on the characteristics of special care units, programs, services, activities and interventions used to manage maladaptive behavior and criteria for admission of individuals to special care units, special programs and specialized services. The survey should be enhanced by information obtained from site visits and interviews with staff of facilities and families.

7) The Alzheimer's Disease and Related Disorders Commission shall request the Virginia Department of Health and the Department of Social Services to develop a list of facilities with special care units, special programs, and specialized services, based on agreed upon definitions and, data that can be collected within their current reporting mechanisms which would be available to consumers and other interested persons.