Consultation with RCI in Georgia

Transcription

1 By David Bass, Leisa Easom, Branka Primetica, and Cynthia Holloway Reflections on Implementing the Evidence-Based BRI Care Consultation with RCI in Georgia This evidence-based caregiver support program demonstrated multiple successes and responded effectively to implementation challenges. The past two decades have seen a proliferation of non-pharmacological programs for family caregivers of ill or impaired older adults that provide information or training on caregiving tasks, respite, emotional support, counseling, or care coordination. Many of these programs have demonstrated an ability to effect desired caregiver outcomes like decreased depression, care-related strains, and unmet needs. Some also improve similar psychosocial outcomes for older care receivers, and a small number reduce care receivers use of high-cost, facility-based services. Randomized controlled trials (RCT) and equivalent methods establish the evidence base for programs that improve caregiver outcomes (Reinhardt, 2010). Most RCTs test program efficacy, using small, non-representative samples, with implementation staff hired, trained, and supervised by researchers. Although necessary to establishing efficacy, results from RCTs typically do not test whether or not the trials achieve positive outcomes when programs are delivered on a large scale to diverse populations (Fixson et al., 2005). They also provide little information about the feasibility of delivering programs as part of the usual care provided by service organization staff, without careful monitoring by researchers of fidelity to research protocols (Fixson et al., 2005; Bass and Judge, 2010). As a result, most programs are not widely available to the general public, nor are they sustained components of communities service networks (Gitlin et al., 2015). There is a growing recognition by clinicians, administrators, policy makers, and applied researchers of the need for more information on how to translate efficacious evidence-based programs to the community and make them accessible to older adults and families (Woolf, 2008). Implementation science is an evolving field focused on understanding how characteristics of programs, providers, organizations, and communities affect translational initiatives (Fixson et al., 2005). Questions investigated by implementation science include, for example, the feasibility of implementing programs outside of controlled research; whether or not positive outcomes are replicated in community settings; and, how to balance fidelity to the program against the needed flexibility to accommodate real-world community and organizational contexts (Primetica et al., 2015). The Alzheimer s Disease Supportive Services Program (ADSSP) of the Administration for Com- Winter Vol. 39. No. 4 49

2 Pages munity Living was a major initiative to apply implementation science to community implementations of evidence-based programs for persons with Alzheimer s Disease or related dementias and their family caregivers (Section 398 of the Public Health Services Act). In 2010, an ADSSP grant to the Rosalynn Carter Institute for Caregiving (RCI) enabled implementation of the evidence-based program, BRI Care Con sultation, by area agencies on aging (AAA) in Georgia. This translational effort was undertaken in partnership with researchers and trainers from the Benjamin Rose Institute on Aging (BRIA) in Cleveland, Ohio. BRIA owns BRI Care Consultation and licenses other organizations to deliver the program. BRIA and RCI continue their partnership in licensing and training sites in Georgia and other selected locations across the United States. This article describes lessons learned from the three-year ADSSP rollout of BRI Care Consultation. It also provides an update on sustainability efforts since completion of this grant. Three AAAs (Atlanta Regional Commission, Legacy Link, and Heart of Georgia Altamaha) implemented the BRI Care Consultation in Georgia. Observations described in this article come from RCI and BRIA staff that recruited and trained organizations to take part in the RCI Georgia rollout, monitored implementation fidelity, and conducted pre- and post-outcomes surveys of family caregivers. This article provides practical tips that can be used to inform future implementations of BRI Care Consultation, as well as other evidence-based programs for family caregivers. While some observations are specific to BRI Care Consultation, most extrapolate to other evidence-based programs and offer qualitative data to advance the field of implementation science. Caregiving for Dementia and BRI Care Consultation Family caregivers provide the vast majority of care to the 5.3 million Americans diagnosed with dementia, with care totaling 17.9 billion hours and an estimated value of billion. (Alzheimer s Association, 2015). However, the number of available caregivers is decreasing, concentrating caregiving to a more limited pool of family members and increasing pressure on formal services (Redfoot, Feinberg, and Houser, 2013). Many caregivers experience negative consequences from fulfilling this role, such as depression, fatigue, and deterioration in physical and emotional health (Albert, 2004; National Alliance for Caregiving and AARP, 2009; Bass et al., 2012). For nearly thirty years, RCI and BRIA have worked to build quality, long-term homeand community-based services and supports that buttress caregivers efforts. BRI Care Consultation is one example. BRI Care Consultation, a coaching program driven by consumer choice, is focused on finding solutions to older adults and their caregivers priorities for care. In controlled studies, BRI Care Consultation improved psychosocial outcomes for care receivers and caregivers, and reduced hospital readmissions and return emergency department visits (Bass et al., 2003; Clark et al., 2004; Bass et al., 2013, 2014, 2015). The program has a standardized protocol and is used for an extended period of months or years, which contrasts with time-limited educational or counseling interventions. It also has an alternate version called Partners in Dementia Care (Judge et al., 2011). The RCI Georgia implementation was one of BRI Care Consultation s early translational studies. Since then, several other translational studies have been completed and it is now being widely marketed as a product line. There are now twenty-one organizations licensed to deliver BRI Care Consultation, with more sites being added. Licensed organizations are diverse in their missions, locations, and populations served, as BRI Care Consultation is designed for older adults and family caregivers dealing with all types of chronic disease conditions not just for conditions that cause dementia. 50 Winter Vol. 39. No.4

3 Pages Family Caregiving BRI Care Consultation is a low-cost service delivered by telephone, mail, and , with inperson contacts rarely needed. A full-time care consultant maintains caseloads of seventy-five to 150 families. The cost of the program in the RCI Georgia rollout was approximately $2 per day, per family, based on expenses for salaries and benefits of care consultants and supervisors, equipment, supplies, training, and software. Training for care consultants was a two-day initial session on the program s philosophy, service delivery protocol, and customized software that guides delivery. Refresher trainings and fidelity reviews also were provided. BRI Care Consultation improved psychosocial outcomes for care receivers and caregivers, and reduced hospital readmissions and return emergency department visits. BRI Care Consultation gives equal attention to care receivers and caregivers. Care receivers are engaged in the program whenever possible. If care receivers are too impaired, caregivers can be the sole participants. The program has three main components: initial assessment; action plan; and, ongoing maintenance and support, including reassessment. Initial Assessment. The initial assessment is completed gradually during the first four months. This extended period enables simultaneous implementation of the action plan and as such immediately begins to assist care receivers and caregivers with concerns important to them. Addressing enrollees concerns is the first priority, with completion of the initial assessment being a secondary priority. The initial assessment covers a broad range of domains; twenty-four for care receivers (e.g., coordinating and accessing services and benefits, memory problems and difficult behaviors, and healthcare concerns), and eleven for caregivers (e.g., finding and accessing community services, care-related strains, and depression). The required initial assessment consists of a singleitem trigger question for each domain, with more extensive (but optional) detailed questions provided, if needed to gauge problem severity. Using trigger questions keeps the assessment brief, even though many domains are addressed. Action Plan. The core of BRI Care Consultation is the action plan, which comprises simple behavioral tasks action steps that, if accomplished, move care receivers and caregivers toward solutions to their most important concerns. With coaching and guidance from care consultants, care receivers and caregivers determine the content of action steps, the party responsible for completing action steps, and projected completion dates. New action steps are continually added, with multiple steps spread over weeks or months as often as needed to find solutions. Copies of action plans are mailed to care receivers and caregivers. Ongoing Monitoring and Reassessment. The hallmark of BRI Care Consultation is a long-term relationship with enrollees to provide continuous support. Care consultants become familiar, trusted experts to families. In the first year, families typically have ten to fifteen contacts with care consultants, including by telephone, , and regular mail. Along with adding new action steps and checking pending action steps, reassessments are an important program component. Reassessment involves readministering trigger questions and is required every six or twelve months. More frequent reassessments are recommended for persistent or ongoing problems. Successes from the Georgia Implementation The RCI Georgia implementation of BRI Care Consultation had three important successes. First, the project received referrals and enrolled a large number of families, demonstrating that providers would refer and consumers would use Winter Vol. 39. No. 4 51

4 Pages the program. There were 439 families who participated, with referrals from a mix of internal AAA sources and external community organizations. Internal referrals demonstrated the program was an effective supplement or substitute to other AAA services. Additionally, the large number of enrolled families was due to a strong marketing and outreach effort, which typically is needed when any new program is introduced (Fixson et al., 2005). The hallmark of BRI Care Consultation is a long-term relationship with enrollees to provide continuous support. Second, quantitative outcomes, measured by data from structured research interviews with family caregivers, showed a variety of significant improvements from time of enrollment to twelve months after enrollment. These improvements were similar to those observed in controlled research studies and included significant reductions in eight categories of unmet needs: quality of family and friend support; understanding the dementia diagnosis; managing daily tasks; respite from caregiving; legal and financial issues; emotional support; finding and using community services; and, knowledge of alternative living arrangements. Unmet needs decreased by a third across all categories. Among caregivers whose care receivers had more severe dementia, use of BRI Care Consultation also was associated with significant reductions in care-related strain, such as reduced isolation, feelings of being trapped in the caregiver role, and physical and emotional health deterioration. Third, all three AAAs participating in the RCI Georgia implementation established licenses to deliver the program after the grant period; one immediately in 2013, and the other two in Additionally, in 2015, three other AAAs in Georgia added BRI Care Consultation. Site renewals and expansions represent sustained implementation, which is a key marker of success for evidence-based programs (Gitlin et al., 2015; Alliance for Aging Research, AOA, and MetLife Foundation, 2012). Barriers, facilitators, and lessons learned The high-level successes outlined above were made possible because of ongoing support and advocacy by RCI, BRIA, and program champions from the AAAs and Georgia Department of Aging. This organizational partnership created a spirit of collaboration and trust, which was essential for initial and sustained implementation. Qualitative observations by BRI Care Consultation developers, program evaluators, master trainers, and care consultants suggested four other categories of factors influenced the initiative s success; some were barriers and others were facilitators: characteristics of external environment; AAAs organizational resources; characteristics of delivery staff; and, the evidence-based protocol and training. External Environment. Three characteristics of the external service environment in Georgia facilitated adoption of BRI Care Consultation. First, there was increasing pressure to serve the growing population of older adults, with little or no increase in funding. Leaders within Georgia s aging services network believed traditional in-person case management was not a feasible or cost-effective way to meet the needs of the increasing population. Moreover, waiting lists had grown and no standard alternative was being offered to those not being served. Some AAA leaders also felt many older adults did not want or need traditional case management and would prefer consumer-empowerment service models. Second, AAAs were looking for ways to increase support for family caregivers, recognizing that family caregivers provide the vast majority of long-term care for older adults in the community and are key to allowing them to remain at home (Reinhard et al., 2015). Additionally, there was a growing awareness that family 52 Winter Vol. 39. No.4

5 Pages Family Caregiving caregivers of people with dementia are especially vulnerable to negative caregiving consequences, which threaten their well-being and the quality of care they provide (Schulz et al., 1995). Third, the Georgia Department on Aging and the AAAs had committed to programs that achieve measureable positive outcomes. BRI Care Consultation was not the first evidencebased program implemented in the state. These past experiences created a strong knowledge base about the realities of starting and sustaining evidence-based programs, including sensitivity to the importance of effective training and proactively dealing with negative reactions by staff to required changes. BRI Care Consultation had a number of features that aligned well with these environmental characteristics. At an average of $2 per day, the program is of lower cost than traditional case management. This enabled the limited available service dollars to be stretched to serve more families. The program allows participation by both caregivers and care receivers, although it is flexible enough to be appropriate when only one or other member of the caregiving dyad is interested and-or able to take part. Designing the program for both care receivers and caregivers acknowledges the importance of family or friends as the linchpin of long-term, community-based care, and reinforces the dignity and autonomy of care receivers by encouraging their participation in care and decision making. Additionally, BRI Care Consultation uses an empowerment model, emphasizing consumer autonomy, control, and preferences. Efficient Use of Organizational Resources. A frequent tension when translating researchtested programs to real-world settings is maintaining fidelity to the evidence-based protocol, while efficiently using resources for program delivery (Denton, Vaughn, and Fletcher, 2003). This was a significant challenge for BRI Care Consultation and required flexibility and openmindedness by both program developers and service organizations. Embedded in the AAA culture was the expectation of employee multi-tasking, which differed from the task division of labor outlined in the original program protocol. Care consultants were expected to handle both clinical and nonclinical tasks (e.g., scheduling telephone calls, mailing educational materials, and routine monitoring contacts), while maintaining desired caseload sizes. The protocol s recommendations related to the supervisor s role were considered too intense, given competing responsibilities. To accommodate these realities, automated approaches to fidelity monitoring were incorporated into the BRI Care Consultation software. This maximized efficient use of a care consultant s time to deliver the program and a supervisor s time for overseeing protocol adherence. There also was limited office space and computer access, particularly in rural sites. Program developers and master trainers had to devise alternative record-keeping procedures for those with limited computer access. Additionally, a new Web-based version of the software helps address these challenges by allowing care consultants to work securely from different locations. Staffing. Essential to successful implementation was having a Program Champion within each AAA who advocated for BRI Care Consultation to be an organizational priority, and to solve any internal conflicts or decisions about competing uses for organizational resources. These champions had influential positions within the organizations and were important throughout implementation. An important facilitator of program success was selecting appropriate staff to be trained as care consultants. Educational requirements to be a care consultant are having a baccalaureate degree in social work, nursing, psychology, or related field. Staff must be comfortable communicating with family members via telephone, and they should have some knowledge of and experience with services for older adults and-or families dealing with chronic health problems. Importantly, staff must be open to delivering Winter Vol. 39. No. 4 53

6 Pages care and services in new ways, because change is an inherent part of starting a new program. They also must be willing to follow the evidencebased protocol, and accept the importance of monitoring protocol fidelity. There can be benefits to using existing (rather than newly hired) staff as care consultants. They often have a better understanding of the larger organization and more insights into optimum ways of interfacing the program with other services and resources. Linking and coordinating with other services and resources are the most common action steps within care receivers and caregivers Action Plans (Judge et al., 2011). Existing staff also may be better able to rally internal support for the program by leveraging established relationships with co-workers. One barrier in implementation was the need for special-topics training to ensure all staff had the necessary expertise on dementia and dementia care. However, some existing staff have difficulty altering previous roles and ways of delivering care and services. Failing to adjust to changes undermines adherence to the evidence-based protocol. For example, telephone delivery can be challenging for persons experienced with in-home case management or traditional clinical therapeutic approaches (e.g., cognitive behavioral therapy). Selecting staff that are open to new ways of delivering services, along with effective ongoing training and supervision, can help overcome this difficulty. A key staffing consideration was having care consultants commit a significant number of work hours to program delivery so they would become proficient with the protocol and customized software. A barrier was that care consultants had multiple and competing job responsibilities diluting time and energy dedicated to the program. Most care consultants need daily or near- daily use of the protocol and software to competently deliver the program. Training and Adherence to the Evidence- Based Protocol. Implementing evidence-based programs requires staff to change service content and delivery procedures. These changes are challenging because one must learn new information and skills, as well as alter familiar and comfortable behaviors. Frequency and length of training, quality of training materials, and trainers competencies and teaching styles all affect staff ability to make necessary changes. A strength of BRI Care Consultation was having quality written and online manuals, experienced trainers, and customized software to guide delivery. The structured, two-day initial training session was very effective at preparing care consultants and supervisors for initial implementation. However, most trainingrelated challenges came after the initial session, and related to sustained adherence to the protocol. One barrier to sustained adherence was slower-thanhoped-for enrollment of families. Enrollment delays resulted from having to make changes in administrative or organizational procedures so the new program could be fully integrated. Examples include new procedures for getting internal or external program referrals, and adjusting staff responsibilities so care consultants could be fully dedicated to the program. BRI Care Consultation achieves economies of scale when care consultants have full caseloads of seventy-five to 150 families. A second barrier was providing enough ongoing and refresher trainings to prevent drift from the evidence-based protocol and a regress to pre-implementation practices. Although this need decreased over time, continuous reinforcement of and re-training on key features of the protocol were needed throughout the implementation period. Both in-person and online refresher trainings were provided. Even after months of implementation, care consultants benefited from ongoing training focused on the importance of 54 Winter Vol. 39. No.4

7 Pages Family Caregiving continuously adding action steps to families action plans and the importance of reassessment. A third barrier for the Georgia implementation was the need for special-topics training to ensure all staff had the necessary expertise on dementia and dementia care (the target population for this implementation of BRI Care Consultation). When implementing the program in service organizations, rather than in controlled research, there was considerable variability in staff knowledge of and experience with dementia. Supplemental training was needed to bring all staff to the level of expertise necessary to work effectively with this population. Conclusion Successful implementation of evidence-based programs is a byproduct of multiple factors, many of which are separate from the program itself. Characteristics of communities, delivery organizations, implementation staff, training, and manuals play important roles in whether or not a program is feasible, acceptable, and sustainable. BRI Care Consultation provided an example for exploring those factors that served as barriers to and facilitators of successful implementation in three AAAs in Georgia. The observations discussed in this article were not systematically researched, but represent perceptions from program developers, evaluators, master trainers, and care consultants. More systematic research is needed to build the formative field of implementation science. Regarding the future of BRI Care Consultation in Georgia, it is heartening to note that the number of AAAs implementing the program doubled from the original three, to six at the end of This expansion is a significant step toward making this evidence-based program available to all older adults and caregivers dealing with dementia throughout the state of Georgia and thereby improving the quality of care and support families receive. David Bass, Ph.D., is senior vice president for Research and Education at the Benjamin Rose Institute on Aging in Cleveland, Ohio. He can be contacted at dbass@benrose.org. Leisa Easom, Ph.D., R.N., is executive director and Pope Eminent Scholar at the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University in Americus, Georgia. She can be contacted at leisa. easom@gsw.edu. Branka Primetica, M.S.W., is BRI Care Consultation program manager/senior research analyst II at the Benjamin Rose Institute on Aging. She can be contacted at bprimetica@benrose.org. Cynthia Holloway, R.N., is BRI Care Consultation program manager at the Rosalynn Carter Institute for Caregiving. She can be contacted at cynthia. holloway@gsw.edu. References Albert, S. M Beyond ADL IADL: Recognizing the Full Scope of Family Caregiving. In C. Levine, ed. Family Caregivers on the Job. Moving Beyond ADLs and IADLs. New York: United Hospital Fund. Alliance for Aging Research, Administration on Aging (AOA), and MetLife Foundation Translating Innovation to Impact: Evidence-based Interventions to Support People with Alzheimer s Disease and Their Caregivers at Home and in the Community. Retrieved October 8, Alzheimer s Association Alzheimer s Disease Facts and Figures. Chicago: Alzheimer s Association. Retrieved October 22, Bass, D. M., and Judge, K. S Challenges Implementing Evidence-Based Programs. Generations 34(1): Winter Vol. 39. No. 4 55

8 Pages Bass, D. M., et al The Cleveland Alzheimer s Managed Care Demonstration: Outcomes After 12 Months of Implementation. The Gerontologist 43(1): Bass, D. M., et al Negative Caregiving Effects Among Caregivers of Veterans with Dementia. American Journal of Geriatric Psychiatry 20(3): Bass, D. M., et al Caregiver Outcomes of Partners in Dementia Care: Effect of a Care Coordination Program for Veterans with Dementia and Their Family Members and Friends. Journal of the American Geriatrics Society 61(8): Bass, D. M., et al A Controlled Trial of Partners in Dementia Care: Veteran Outcomes After Six and Twelve Months. Alzheimer s Research & Therapy 6(9): Bass, D. M., et al Impact of the Care Coordination Program Partners in Dementia Care on Veterans Hospital Admissions and Emergency Department Visits. Alzheimer s & Dementia: Translational Research & Clinical Interventions 1(1): Clark, P. A., et al Outcomes for Patients with Dementia from the Cleveland Alzheimer s Managed Care Demonstration. Aging & Mental Health 8(1): Denton, C. A., Vaughn, S., and Fletcher, J. M Bringing Research-based Practice in Reading Intervention to Scale. Learning Disabilities Research & Practice 18(3): Fixson, D. L., et al Implementation Research: A Synthesis of the Literature. Tampa, FL: University of South Florida, Louis de la Parte Florida Mental Health Institute, National Implementation Research Network (FMHI Publication No. 231). Gitlin, L. N., et al Translating Evidence-based Dementia Caregiving Interventions into Practice: State of the Science and Next Steps. The Gerontologist 55(2): Judge, K. S., et al Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers. The Gerontologist 51(2): National Alliance for Caregiving and AARP Caregiving in the U.S. Caregiving_in_the_US_2009_full_ report.pdf. Retrieved October 8, Primetica, B., et al Evidence-based Program Replication: Translational, Activities, Experiences, and Challenges. Journal of Applied Gerontology 34(5): Redfoot, D., Feinberg, L., and Houser, A The Aging of the Baby Boom and the Growing Care Gap: A look at the Future Declines in the Availability of Family Caregivers. Insight on the Issues 85. Washington, DC: AARP Public Policy Institute. C2Xjbt. Retrieved October 8, Reinhard, S. C., et al Valuing the Invaluable: 2015 Update. Insight on the Issues 104. Washington, DC: AARP Public Policy Institute. Retrieved October 8, Reinhardt, J. P Research Methods in Evidence-based Practice: Understanding the Evidence. Generations 34(1): Schulz, R., et al Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes. The Gerontologist 35(6): Woolf, S. H The Meaning of Translational Research and Why It Matters. Journal of the American Medical Association 299(2): Winter Vol. 39. No.4

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