This article provides an overview of two evidence-based programs that have recently been translated by two different community agencies. STAR-C is a psychosocial support and skill training program designed to teach caregivers how to identify and increase pleasant events, improve communication, and use behavioral problem-solving skills to reduce the problems experienced by their family member with dementia while improving care and life quality. RDAD incorporates training in these caregiving skills while also training caregivers and persons with dementia to engage in exercises designed to improve strength, flexibility, balance, and general physical function. Both STAR-C and RDAD were designed to be conducted in the home of the person with dementia and their caregiver.
STAR-C was adapted by the Oregon Department of Human Services to increase the capacity of AAA in three counties to provide care to older adults with dementia and their caregivers. To date, 13 individuals have been trained and 70 dyads (caregivers and their family member with dementia) have successfully participated in the program. RDAD was adapted by the Alzheimer’s Association Northwest Ohio Chapter and expanded to other chapters in Ohio to enhance their offerings to older adults with dementia and their caregivers by providing both caregiver education and support and physical exercise training. They have successfully trained 25 staff who have provided RDAD to 405 family dyads; RDAD is now offered throughout the state of Ohio.
A number of aspects of initial program development were instrumental in ensuring the successful translation of these programs, including development by clinicians with extensive experience in working with dementia patients and their caregivers; systematic yet flexible approaches to training; detailed, well-developed, and well-researched training materials; experts to provide initial training to field trainers and prior demonstrated utility in community setting; and evidence from randomized controlled clinical trials.
The translation of these programs provided opportunities and challenges both for the developers of these programs and for the administrators and staff implementing them in community-based agencies. Balancing the needs of the community agencies with requirements of the funders and standards of the developers was ongoing. Establishing a true partnership was essential. Many issues could have been “deal breakers,” but by working together and focusing on our common goal of enhancing the care of older adults, there was considerable opportunity for true collaboration. Decisions made together were better than any decision that would have been made independently.
The journey of RDAD and STAR-C from initial development to randomized controlled clinical trial to translation into community-based agencies is far from over. Active consultation and support between the developers and the agencies are ongoing. The first wave of trained staff at each site has trained and supervised the second wave. Thus, both sites are well on their way to building capacity to address these critical health care needs. How the developers’ roles will evolve as the sites become more expert in delivering the programs remains an open question.
Both Oregon and Ohio are committed to continuing RDAD and STAR-C; the initial positive responses of trainers, caregivers, and those with dementia have made it clear that the programs are worth maintaining. However, a number of questions must now be answered if these programs are going to continue to be implemented and sustained over time. How can the integrity and effectiveness of the program be maintained and documented while it also evolves to meet the changing clinical and economic needs of clients being served? What are the costs and economic benefits of providing the programs? What minimum data set will be sufficient to continue tracking the integrity of the program, its effectiveness, and cost? What ongoing staff training, certification, or licensure will be necessary to maintain skills and continue providing quality services?
This is not the first partnership of researchers and community agencies to traverse the road to translation. Lorig’s Chronic Disease Self-Management Program has been disseminated nationally and internationally, training peer facilitators and evaluating the impact of the program on participants (Lorig, Hurwicz, Sobel, Hobbs & Ritter, 2005
). Although each evidence-based program has distinctive characteristics, can we collectively develop a consistent strategy across programs or must each program develop its own translational plan? In our case, differences in the programs themselves—the time commitment required and the focus of training—as well as differences in the agencies—time allocated to start-up and development, variability in the constituents they served, as well as the geographic region in which they are located—may well influence their short-term success and long-term viability. As more and more programs are conducted in diverse communities, only continued committed partnerships between agencies and researchers can help identify ways to increase the likelihood of success.
The true test of the success of the two programs described in this paper will, of course, be the test of time. Two critical questions will need to be answered: First, are these programs effective in their new settings? Second, if they are effective, will these agencies be able to sustain them?
Effectiveness will be relatively easily answered—both agencies are currently engaged in program evaluation activities and outcome data will be available soon. At this time, administrators, trainers, and caregivers are reporting good success and are well pleased with the program; agencies have reported significant success in both enrolling and maintaining clients in the program, trainers are excited about the improvements they are seeing, and caregivers report that they and their family members with dementia are benefiting.
Sustainability is less easily answered. Although both agencies were successful in competing for and obtaining Agency on Aging funding to initiate these translations, there is an expectation that they will develop a revenue stream to maintain these programs. How feasible that will be in the current economic climate is uncertain. Clearly, the infusion of monies from funding agencies and the interest in taking evidence-based programs to the next level of translation are helping move things forward. But how long will these monies be available and what infrastructures will survive when these initial outlays are gone? Ohio successfully trained the second wave of providers by having the first wave (in conjunction with the developers) conduct the training. Oregon is planning to follow suit. For both agencies, by integrating these programs into their portfolio of services, they are on the road to sustainability. How can these programs be linked to changes in health care, the focus on care transitions, and the interest in ensuring that state long-term care systems are dementia capable?
What can we do as researchers, clinicians, and policy makers to insure effective programs are supported and grown? Even the most effective program must evolve over time and meet the changing needs of the health care system as well as its constituents. How do we enable new programs to be developed that might offer hope to those not yet reached? How do we insure we share our knowledge and experiences so we learn from each other in as cost effective a way as possible—assuring that we do not repeatedly start from scratch wasting precious resources? Time and hard work—focused clinical activity, funded services, and additional research—will together determine whether these and other translational efforts are fruitful in achieving the goal of improving the care of older adults with dementia.