If a relative falls ill with Alzheimer's disease or some other chronic, debilitating illness, many families may feel as if they have only two options for care: either have someone in the family take on the role of full-time caregiver, or place their loved one in a nursing home. But some options exist that represent a middle ground between these two difficult extremes.
One such option, adult day services, allows chronically ill people to continue living at home yet receive the care they need. These centers, located in many communities across the country, provide health, social, and support services for adults with impaired physical, mental, and/or social abilities. At the same time, they allow family caregivers much-needed respite, and also allow them to continue working if they need to earn a living.
Partners in Caregiving, a program of the Robert Wood Johnson Foundation, has helped foster and support the creation and expansion of adult day centers in this country for nearly 15 years.
In the 1980s, the Robert Wood Johnson Foundation started a a program that would create and expand community-based, nonresidential services to meet the needs of people with dementia and their caregivers. With co-funding from the national Alzheimer's Association and the United States Administration on Aging, the Foundation in 1987 established the $5.1 million Dementia Care and Respite Services Program, the first national demonstration program for adult day services.
The Wake Forest University School of Medicine was selected to serve as the national program office (NPO). The first phase of the program resulted in 17 centers in 13 states, from 1988 through 1992. The program was simultaneously assessed for both the effectiveness of the care provided through these centers and whether they were cost-effective and found encouraging results on both fronts.
This initial success prompted the Foundation to fund the second phase of the program, which was actually a new initiative. The new initiative was named Partners in Caregiving: The Dementia Services Program. This $2.5 million program, which ran from 1992 through 1996, was an effort to replicate and take to scale some of the original work from the first phase, and resulted in 50 centers in 30 states and the District of Columbia. Wake Forest University School of Medicine continued as the national program office.
Under the Partners in Caregiving initiative, participating adult day centers continued to serve people with Alzheimer's disease or related disorders. The centers also began to serve those with mental retardation, developmental disabilities, and chronic mental illness, as well as the frail elderly and the physically challenged, such as people with multiple sclerosis. The initiative continued to demonstrate that adult day centers are a viable option to nursing home placement.
The next and current phase of the program, called Partners in Caregiving: The Adult Day Services Program, began in 1998 and is scheduled to run through 2002. The goal of this program is to establish a national adult day services resource center, which also operates out of the Wake Forest University School of Medicine.
“We're taking the more than 10 years of lessons learned, best practices, and predictors of success from the two previous programs and disseminating what we've learned,” said Nancy Cox, M.S.W., the program director. The current initiative uses a variety of methods to spread the word, including mobile adult day services colleges (three days of training on financing, marketing and programming to start new centers), a network of teaching day centers, a toll-free hotline, a national newsletter and national presentations.
A major goal of the current Partners in Caregiving, and its predecessor programs, is to encourage adult day centers to be consumer-responsive and to come up with innovative ways to solve the caregiver's problems. The initiative focuses on educating mission-based, nonprofit adult day programs about the principles of marketing, financial management, and quality programming, with the ultimate goal of providing quality care while remaining financially self-sufficient.
”We really encourage centers to become financially self-sufficient through operating revenue. Otherwise, you'll spend most of your time writing grants and putting all your time and energy into fund-raising events with very little return on your investments,” said Cox. “To stay in business, you have to act like a business.”
A decade of experience has shown that community-based adult day centers can care effectively for people with Alzheimer's disease and other chronic, debilitating illnesses, that there is a demand for these services, and that families consider these services valuable enough to pay for them out-of-pocket.
A number of essentials for success have emerged. To be effective and successful, an adult day program must:
A number of lessons learned, benchmarks, and predictors of success about adult day services have emerged from Partners in Caregiving:
More adult day centers are needed to serve the families who could use these services, according to a new nationwide survey conducted for the Robert Wood Johnson Foundation. The Foundation recently completed an extensive, nationwide survey of adult day care in the United States, the first of its kind. The current number of adult day centers—3,407—falls far short what is needed to serve the needs of the population of adults with chronic, debilitating illnesses and their family caregivers. The survey estimates that about 8,500 adult day centers are needed nationwide to meet current demand for services.
What are the most effective ways to market to working caregivers? How do you set prices and talk about them with customers? What are the steps to convert an inquiry to an enrollment? How do you assess clients individually to match them with appropriate activities?
Partners in Caregiving has developed a number of training resources and products that provide practical advice to answer these and many other questions about running a successful adult day center. Manuals and workbooks, templates for marketing materials, and videotape and audiotape series are available.
Partners in Caregiving Director Nancy Cox, her staff and participating center directors take note of developments in the adult day services industry. The following are trends observed over the past five years: