Running head: CARING FOR THE CAREGIVER 1 Caring for the Caregiver Erin Craft-Otterbacher Arizona State University CARING FOR THE CAREGIVER 2 Abstract Background: As the nation’s population ages and the prevalence of chronic diseases, like dementia, increases, informal caregivers will play an increasingly important role in maintaining independence for the elderly. Informal caregivers provide most long-term care for the elderly in this country and save hundreds of billions of dollars in healthcare costs annually. However, most informal caregivers experience burden secondary to caregiving that adversely impacts their physical, social, and/or psychological health. Caregiver burden threatens caregiver health and contributes to institutionalization of care recipients. Since the program of all-inclusive care for the elderly (PACE) model of care delivery relies heavily on informal caregivers to maintain independent aging, understanding and meeting the needs of caregivers is essential to the sustainability and success of PACE programs. Purpose: This evidence-based practice (EBP) project was a gap analysis that surveyed 156 caregivers at an urban PACE program in the Midwest to examine caregiver demographics, caregiver burden, caregiver interest in support services, and the relationship between these variables to guide the development of caregiver programs. Methods: Caregiver Assessments were administered to 156 caregivers via telephone or in person. The assessment included caregiver demographics, interest in caregiver services, and the 12-item Zarit Burden Interview (ZBI-12) to assess caregiver burden. The ZBI-12 has good reliability and validity as indicated by a Cronbach’s alpha of 0.88 and a correlation with the full version ZBI scores of 0.95. Results were analyzed using descriptive statistics, the Pearson r correlation test, the Wilcoxon signed rank test, and the Mann-Whitney U test on SPSS version 25. This project was approved by the Arizona State University IRB. Results/Outcomes: Of 171 eligible informal caregivers of program participants living outside of an institution, 156 completed the survey, 3 refused, and 12 were unreachable. Most informal caregivers surveyed were Caucasian (69.5%) females (66%), children of the care recipients (45.5%), caring for people with dementia (40.6%), with some college education (37.2%), who earned $10,000$25,000 annually (38.7%), provided over 30 hours of care per week (55.8%), and averaged 61.4 years old (SD=7.7). The average ZBI-12 score was 12.15 (SD=9.04), indicating a moderate level of burden. The most common stressors indicated by caregivers were activities of daily living (ADL) assistance (63.5%) and the time commitment involved in caregiving (57.7%). Correlates to high burden score included: limited time, aggressive behavior, financial stress, grief, assistance with ADLs, wandering behavior, toileting assistance/incontinence, and lack of sleep. Respite care was identified by 42.9% of those surveyed as the most helpful resource provided by PACE. 55.1% and 50.6% of caregivers indicated an interest in educational sessions and support groups respectively, if these services were offered in the future. Conclusion: Through the exploration of caregiver demographics, factors correlated to increased burden, and caregiver interest in support services, the results from this EBP project provide guidance to programs, particularly other PACE programs, seeking to proactively mitigate caregiver burden through support services. The results indicate that respite care, educational sessions, and support groups should be prioritized when developing informal caregiver support services. CARING FOR THE CAREGIVER 3 Caregiver burden is a complex phenomenon that incorporates the physical, psychological, and psychosocial consequences of providing care (van der Lee, Bakker, Duivenvoorden, & Droes, 2014). While caregiver burden can affect anyone delivering care, prevalence rates are higher among informal caregivers assisting people with dementia (PwD)(Alzheimer’s Association, 2017). Given that caregiver burden is a common precursor to institutionalization, reducing the prevalence among those helping PwD is a public health priority that will improve patient quality of life, protect informal caregiver health, and save the nation billions of dollars in care giving costs (Alzheimer’s Association, 2017). This evidence-based gap analysis examines the way organizations can assess and mitigate caregiver burden to preserve independent living in the geriatric community. While the focus of the literature review and evidence synthesis pertains to caregivers of PwD, the gap analysis examines the demographics, burden levels, and support service interest of primary caregivers for elderly individuals with a range of medical diagnoses. The design of the gap analysis and the results can be used by healthcare organizations attempting to better meet the needs of the informal caregivers they serve. Background & Significance Alzheimer’s dementia is the most common cause of dementia, accounting for 60 to 80% of cases; therefore, in this paper, Alzheimer’s disease and dementia will be used interchangeably. It is estimated that by 2050, one person will be diagnosed every 33 seconds (Alzheimer’s Association, 2017). The result is a projected 13.8 million people with Alzheimer’s disease in the United States (U.S.) by mid-century. This is more than double current prevalence. Informal caregivers of PwD are more likely than those caring for people without dementia to: provide assistance with three or more ADLs; monitor the health of the care CARING FOR THE CAREGIVER 4 recipient; help with mobility; manage finances; manage mental or emotional health problems; coordinate healthcare; and arrange for outside services (National Alliance for Caregiving & AARP, 2015; U.S. Department of Health and Human Services, 2014). Given the quantity of tasks that require assistance and the duration of the disease process, it is not surprising that those providing care for PwD provide more than double the hours of care annually for more years than informal caregivers of those without dementia (Alzheimer’s Association, 2017; National Alliance for Caregiving & AARP, 2015; U.S. Department of Health and Human Services, 2014). Family members care for the majority of PwD at home. These family caregivers serve as the cornerstone of maintaining independent placement for these individuals (Alzheimer’s Disease International, 2015). It is estimated that in 2016, family caregivers saved the U.S. over $230 billion in healthcare services (Alzheimer’s Association, 2017). This number will only rise in the coming years as rates of dementia increase. Unfortunately, caregivers of PwD face significant rates of caregiver burden, which negatively affect their abilities to continue caring for loved ones. Compared to caregivers of those without dementia, informal dementia caregivers report higher rates of financial stress, emotional stress, depression, anxiety, cognitive decline, physical strain, frailty, sleep disturbances, and a lower quality of life (Alzheimer’s Association, 2016; Bremer et al., 2015; Dassel & Carr, 2016; Fonareva & Oken, 2014; Goren, Montgomery, Kahle-Wrobleski, Nakamura, & Ueda, 2016; National Alliance for Caregiving & AARP, 2015; Valimaki et al., 2016; von Kanel et al., 2014). Caregiver burden is a construct that incorporates the subjective and objective physical, psychological, and psychosocial impacts of providing daily services (van der Lee et al., 2014). High rates of informal caregiver burden significantly contribute to institutionalization of PwD (Afram et al., 2014). Despite the substantial demands on informal dementia caregivers and the CARING FOR THE CAREGIVER 5 importance of the role these caregivers play in the healthcare system, providers tend to neglect their needs. Only 32% of caregivers report that healthcare providers asked them what they needed to provide care to the recipient and only 16% report that providers inquired about what caregivers need to maintain self-care (National Alliance for Caregiving & AARP, 2015). While traditional healthcare delivery formats routinely fall short of addressing the complex needs of PwD and their caregivers, innovative programs across the country are attempting to change these dismal trends by addressing patient and caregiver needs using a more holistic approach (Alzheimer’s Association, 2017). Programs of all-inclusive care for the elderly (PACEs) are an example of a comprehensive care delivery system attempting to better meet the needs of patients and their families in the face of an aging population and currently unsustainable national healthcare expenditures (Beauchamp, Cheh, Schmitz, Kemper, & Hall, 2008). PACEs are participant-centered and use an interdisciplinary approach to provide high quality care for the elderly and disabled. These programs use a set monthly reimbursement per program participant from Medicaid, Medicare, and/or private funds to provide all-inclusive care including but not limited to: medical services, housing in assisted living facilities (ALFs) or skilled nursing facilities (SNFs), geriatric psychological care, physical and occupational therapies, speech therapies, recreational services, home health care, care coordinator, and dietary services (Beauchamp et al., 2008). According to a Centers for Medicare & Medicaid Services' (CMS) report, PACEs improve healthcare outcomes, reduce hospital use, increase preventative care, decrease depressive symptoms, improve self-reported health status, and maintain the functioning of those enrolled (Beauchamp et al., 2008). A PACE located in the Midwestern U.S. identified the high utilization of ALFs as an area for improvement within their organization. In 2017, approximately 24% of this organization’s CARING FOR THE CAREGIVER 6 participants were enrolled in ALFs compared to the national average of approximately 15% within other PACE programs. The monthly cost of ALF placement represents approximately 11% of the organizations monthly operating funds. The high ALF placement rate is detrimental to the organization, decreases funds for services to maintain independent placement, is contrary to the organizational mission of maintaining independent living, and often decreases the quality of life for participants. In 2017, nine out of the eleven participants transitioned to a higher level of care had a primary diagnosis of dementia or cognitive decline. All cases were impacted by caregiver limitations and eight of the cases cited caregiver stress as a significant precipitating factor to placement. Of the 306 members at this PACE, 60.7% have a dementia related diagnosis. Participants with dementia related diagnoses are more likely to be living in an ALF than the general PACE population with a 28% and 23% ALF placement respectively. Interviews with multidisciplinary employees at the organization indicate that caregiver burnout is a significant cause of ALF placement. Problem Statement and PICOT Question Informal caregivers provide a significant service to PwD and the community as a whole. Their care and dedication maximizes independent functioning and saves the U.S. healthcare system billions of dollars annually. Caregiver burden increases institutionalization among PwD and is extremely costly to the healthcare system if it is not prevented and properly managed. As the nation confronts the growing prevalence of dementia within an aging population, interventions to bolster informal caregivers will become an increasingly important aspect of community health. The efforts at the Midwestern PACE program to maintain community placement among PwD by decreasing caregiver burden is reflective of a larger societal need. CARING FOR THE CAREGIVER 7 This discussion leads to the following PICOT question: For primary caregivers of PwD (P), what multidisciplinary interventions (I) can be used to prevent caregiver burden (O) when compared to standard care (C)? Search Strategies A thorough review of the most current evidence took place to answer the PICOT question. Four databases were extensively searched – PubMed, PsychINFO, CINAHL, and the Cochrane Database. These databases were selected for their relevancy to the topics of caregiver burden and PwD. Additionally, these databases are known for their rigor and contributions to the medical field. The databases were searched using combinations of the key terms that addressed all aspects of the PICOT question and included: dementia, Alzheimer’s disease, informal caregiver, family caregiver, spouse caregivers, and family. Key terms for the intervention did not include multidisciplinary because this narrowed the search too significantly. Instead operational forms of multidisciplinary interventions were used and included the terms: education, support group, prevent, and social support. The outcome was specified using the terms: caregiver burden, compassion fatigue, caregiver burnout, burden, and depression. Filters applied included date of publication (2013 to 2018), English language, and peer-review journal articles. Mesh and Boolean terms were to broaden the search. The titles and abstracts of all articles were assessed for searches yielding under 200 results. An initial search of PubMed using key terms family caregiver, dementia, caregiver burnout, and prevent yielded only one result so Mesh terms were added and the key terms were made less specific to widen the search. This search yielded 872 results so further search terms specifying the dementia population were added. Filters were added to further limit the search. CARING FOR THE CAREGIVER 8 Additional searches yielded 200-20 results. The initial search of PyschINFO included the key terms caregiver burnout, dementia, and family and yielded only eight results. The search terms were changed to family caregiver and dementia. This search yielded 288 results so the above filters were applied to limit the results. The initial CINAHL search included the key terms caregiver burnout, dementia, and family. As with the other database searches, initial results were limited and only produced one article. Changing the term caregiver burnout to caregiver burden significantly increased the search results to 298. Filters were applied to this search to lower the article count to 123 results. One of the initial Cochrane Library searches included the terms caregiver burnout and dementia produced a limited two results. Adding the search terms family caregiver and Alzheimer’s increased these article results to 33. Given the rigor of systematic reviews included on Cochrane Library, it is not surprising that these searches yielded fewer results than those completed on other databases. Reviewing the titles and abstracts of the articles identified in these database searches yielded 51 relevant studies. Additionally, the reference lists of these articles were scanned to identify 10 other important studies. Full text copies of the 61 relevant studies were attained and reviewed. Rapid critical appraisal checklists as well as outlined inclusion and exclusion criteria were used to narrow the article pool down to the 10 most relevant and highest quality studies. These included four randomized control trials, four systematic reviews, one longitudinal study, and one mixed method trial (Appendix A). Inclusion criteria included interventions targeting informal caregivers of PwD living at home. Exclusion criteria included interventions targeting PwD only and formal caregivers. Since numerous systematic reviews (SR) were identified, the studies included in the SRs were CARING FOR THE CAREGIVER 9 compared. If more than half of the studies included overlapped, one of the SRs would be removed to minimize the risk of representing certain study results twice. Lastly, for the purpose of selecting the final 10 articles to be included in the table, preference was given to higher levels of evidence. For example, rigorous SRs and randomized control trails (RCTs) were selected over studies with qualitative designs. Evidence Synthesis The Melnyk and Fineout-Overholt’s (2011) rapid critical appraisal was used to evaluate the quality of the 10 articles selected for the literature review. The majority of the studies were high-level evidence, including four SRs and four RCTs (Appendix A). The remaining two articles included a non-randomized non-controlled longitudinal study and a mixed method study (Appendix A). Only three of the 10 articles reported their funding source; however, no bias was recognized in any of the studies. All of studies had an adequate sample size. Marim et al. (2013) was a SR of RCTs that only included four studies. However, this is appropriate given the strict inclusion criteria and specification of the measurement tool used. The literature review includes an international sampling, with only two studies originating in the U.S. (Appendix A). All of the interventions were executed in a community setting and addressed the needs of those providing care to community-dwelling PwD (Appendix B). Eight out of nine studies that measured caregiver burden found a significant decrease or a moderate to strong level of evidence suggesting a decrease following the interventions (Appendix A). Since all of these studies included some form of structured education, it is reasonable to assume education contributed to these improvements. However, due to the heterogeneity of the education provided it is difficulty to draw a conclusion regarding which type of education is most beneficial. For example, the Ducharme et al. (2015) study indicates that CARING FOR THE CAREGIVER 10 while structured education contributes to caregiver psychological improvements, an education booster six months after the initial intervention does not significantly improve outcomes (Appendix A). Strong reliability and validity can be assumed for all the selected studies due to the high-quality measurement tools, the rigorous methodology, and the prevalence of statistically significant results (Appendix B). As the U.S. healthcare system strains under the demands of an aging population, preventing caregiver burden to maintain community-dwelling among PwD is a national priority. This literature review demonstrates the range of interventions being explored to address caregiver burden. While there are numerous approaches to combat caregiver burden, current evidence suggests that structured education is an essential and effective component of any program intended to augment burden among caregivers (Appendix B). The studies in this literature review also provide evidence that support groups, skills training, CBT, and interdisciplinary management may improve quality of life, decrease burden, and decrease psychological distress among caregivers of PwD (Appendix B). For the Midwestern PACE, or any organization hoping to proactively manage informal caregiver burden, an essential first step is understanding the caregiver population served. Therefore, prior to developing caregiver services, like the structured educational sessions supported in the literature review, a comprehensive assessment of the informal caregiver population is necessary to evaluate: current caregiver burden levels, caregiver demographics, caregiver interest in services, and which caregivers within the organization are at the greatest risk for burden. While the literature states and previous internal evidence indicates that burden is most significant among caregivers of PwD, when assessing the informal caregiver population served CARING FOR THE CAREGIVER 11 by an organization, all caregivers of those who are not currently institutionalized should be included so that the organization can get a holistic picture of caregiver needs. This is important because services developed by the PACE are likely to serve the caregivers of those with various diagnoses, not just those assisting PwD. Additionally, assessing the entire informal caregiver population is important to determine whether the trends of higher caregiver burden among those caring for PwD is true within the organization. This cannot be assessed unless there is benchmark data from informal caregivers assisting participants with a variety of disease processes, not just dementia. For these reasons, the Caring for the Caregiver project included all eligible informal caregivers within the PACE community, not just those serving PwD. Purpose Statement The purpose of this gap analysis was to better understand the informal caregivers served by a Midwestern PACE so the organization can develop informal caregiver support services. These services would reflect the needs of the caregivers and the evidence brought forth in the literature review regarding the most effective caregiver interventions. The future programs developed by the organization are intended to decrease caregiver burden and decrease institutionalization of program participants; this would benefit the program participants, their informal caregivers, and the organization alike. Since most of the PACE participants have dementia, the focus of the literature review was on reducing burden among informal caregivers of PwD. However, all informal caregivers served by the PACE organization were assessed in this project because all caregivers would have access to future support services. In this evidence-based practice (EBP) project, caregivers completed the Caregiver Assessment (CA) at an urban PACE program in the Midwest to examine caregiver demographics, caregiver burden, caregiver interest in support services, and the CARING FOR THE CAREGIVER 12 relationship between these variables to guide the development of caregiver programs (Appendix C). Organizational culture and attitudes regarding change initiatives among the staff was assessed at two sites before and after the intervention using the Organizational Readiness for Change Assessment (ORCA) (Appendix D). This data provided feedback regarding the impact of the intervention on staff attitudes. Additionally, the information about potential barriers to change served as a tool for PACE leadership when designing future programs or initiatives. Lastly, the assessment data provided insight into site strengths and weaknesses as perceived by the staff. Conceptual Framework and EBP Model Frameworks and theories guide change by presenting areas for improvement and conceptual relationships in an organized manner (Smith & Liehr, 2014). Dr. Barry Johnson (1996) developed the conceptual model Polarity Thinking, which proposed that seemingly opposed values work together to reach a greater purpose. The Polarity Map is a visual representation of Polarity Thinking (Appendix E). The model suggests that to attain a goal both values need to be leveraged and optimized. Neglecting one pole or the other will lead to a loss of the greater purpose (Johnson, 1996). When applied to the PACE model and caregiver burden, Polarity Thinking suggests that to attain the greater purpose of maintaining independent living among participants, two seemingly opposed poles – the needs of the caregiver and the needs of the care recipient – must to be optimized. If either pole is neglected, the result will be a loss of the greater purpose and subsequent ALF or SNF placement for the PACE participant. While the traditional PACE model provides holistic care delivery to participant, care of the family caregiver is not directly CARING FOR THE CAREGIVER 13 incorporated into the program design (Beauchamp et al., 2008). Upon initial assessment of internal evidence at the Midwestern PACE, it appeared that a failure to address caregiver needs and the subsequent caregiver burden contributed to high rates of institutionalization among program participants. Utilization of the Polarity Thinking framework helped map and monitor pole management during intervention and subsequent program development. The Star Model of Knowledge Transformation (Appendix F) was selected to further guide EBP implementation process (Stevens, 2012). The Star Model outlines five essential steps in evidence implementation and guides translation into practice. The cyclical nature of the Star Model promotes constant reevaluation (Stevens, 2012). This aligns with the Polarity Thinking framework where organizations are continually reassessed using the Polarity Map (Appendix E). Additionally, the Star Model incorporates new concepts while building upon old concepts (Stevens, 2012). This is consistent with the Polarity Thinking concept of supporting seemingly opposed values – the needs of the caregiver and the needs of care recipients - to achieve the higher goal of avoiding institutionalization. Incorporating the original value of providing high quality care to the participant while incorporating the new concept of assisting the caregiver optimizes goal achievement and decreases resistance to change within the organization. Project Methods This EBP project included the evidence summary, translation to guidelines, practice integration, and outcome evaluation steps of the Star Model of Knowledge Transformation to help the PACE better leverage the “needs of the caregiver-needs of the care recipient” polarity (Appendix E & F). The goal of this gap analysis was to better understand the PACE’s informal caregivers, their needs, how well the organization is currently leveraging the “needs of the caregiver” pole, and how they could better leverage the pole through future program CARING FOR THE CAREGIVER 14 development (Appendix E). The gap analysis and practice change occurred from September 2018 to March 2019 at two sites of an the urban, Midwestern PACE. The EBP project was designed in close collaboration with the PACE leadership team, specifically, the clinical director, the directors of interdisciplinary operations from both sites, the geriatric psychologist, and the social workers. This EBP project consisted of three major steps: a staff educational session and preintervention ORCA; administration of the CA to all eligible informal caregivers; and a staff session to review the results and complete the post-intervention ORCA. Participants in the project included PACE staff and the eligible informal caregivers of PACE participants. Staff were provided a paper copy of the consent prior to participant and informal caregivers were either given a hard copy of the consent or informed of the consent over the phone. Staff and informal caregivers provided consent when they completed the assessments. All surveys (CA and ORCA) were deidentified, secured in a locked cabinet prior to data entry, destroyed following data entry, and kept in a password protected computer following entry into SPSS version 25. Cost of this intervention was minimal since the DNP student provided the majority of the labor but costs included: paper and ink for surveys; IDT member time for the initial educational session and the final results review sessions; social worker time for CA administration; and leadership time for the final executive summary presentation. The project was approved by the Arizona Institutional Review Board in 2018 prior to project initiation. Staff Education and Pre-Intervention Assessment Prior to any process change or program implementation, ensuring team buy-in is essential. Without a team that understands the purpose of a change and feels their input has been solicited, any intervention is likely to fail (Dawson & Andriopoulos, 2014). Therefore, a CARING FOR THE CAREGIVER 15 critical first step of process change is early staff involvement. The first steps in this intervention were two all staff educational sessions that occurred at both the organization sites in September 2018. The purpose of these sessions was to: educate members of the team about caregiver burden, discuss the impact of caregiver burden on the PACE program, highlight the organization’s goal to better mitigate caregiver burden, and outline the gap analysis that was being conducted from September 2018 thru January 2019 to better understand the informal caregivers. The educational session increased staff buy-in and provided staff a time to ask questions or express concerns pertaining to the purposed intervention. An hour-long session was held at each PACE site. All members of the interdisciplinary team (IDT) were required to attend these meetings unless they were providing direct patient care during the session time. Twenty-seven staff members attended the session at one site and eleven attended the meeting at the other site. The differences in attendance were consistent with differences in organization size at the two sites. Attendees included: a psychologist, physician assistants, a nurse practitioner, physicians, physical therapists, occupational therapists, speech pathologists, transportation staff, pharmacists, social workers, nurses, dietitians, home health coordinators, and management staff. Staff at the educational sessions were requested to complete the pre-intervention ORCA. The ORCA is a 62-item Likert scale that takes roughly 15 minutes to complete (Helfrich, Li, Sharp, & Sales, 2009) (Appendix D). The ORCA assesses staff perceptions pertaining to organizational culture and facilitation of change initiatives. The Cronbach’s alpha is 0.95 and 0.85 for the facilitation and context subscales of the ORCA, respectively (Helfrich et al., 2009). Content validity was confirmed by a delphi panel of 160 volunteers with expertise in the field of implementation science (Veterans Health Administration, 2013). CARING FOR THE CAREGIVER 16 Administration of the ORCA pre- and post-intervention helped assess any changes in staff attitudes during the intervention and allowed for a comparison of staff attitudes between the two organization sites (Helfrich et al., 2009). Pre- and post-intervention ORCA scores were analyzed in SPSS version 25 using the Wilcoxon signed rank test. ORCA data was compared between the two sites using the Mann-Whitney test. Assessment of Informal Caregiver Immediately following the staff educational sessions, the informal caregiver assessments started. Assessment of the caregivers using the CA occurred from September 2018 to January 2019 (Appendix C). Eligible caregivers were the primary caregivers of noninstitutionalized (in a SNF or ALF) PACE program participants. Primary caregivers were identified using participant charts and their status as the primary caregivers was affirmed by the social workers prior to caregiver contact. Some noninstitutionalized PACE participants did not have a caregiver; therefore, no caregiver could be contacted for this gap analysis. Caregivers were contacted via telephone or in person by members of the social work team and the DNP student. Caregivers were then provided brief education about caregiver burden, informed about the PACE’s caregiver initiative, and asked to participate by completing the CA (Appendix C). If they consented to participation, the survey was then completed with the assistance of a social worker, the DNP student, or independently by the caregiver. All surveys were completed in a private setting. Completion of the survey took ten to forty-five minutes depending on the among of elaboration that was provided by the caregiver during the process. The CA is a survey that consists of three sections: a demographic section, the 12-item Zarit Burden Interview (ZBI-12) to assess burden level, and questions regarding interest in caregiver support services (Appendix C). The ZBI-12 was selected because it has been found to CARING FOR THE CAREGIVER 17 be the most valid short version of the ZBI among caregivers of people with advanced conditions, which represents nearly all PACE participants (Higginson, Gao, Jackson, Murray, & Harding, 2010).The ZBI-12 has good reliability and validity as indicated by a Cronbach’s alpha of 0.88 and a correlation with the full version ZBI scores of 0.95 (Bedard et. al, 2001). If the caregiver was determined to have a high burden during the survey (a ZBI-12 score ≥ 17), they were offered a caregiver resource guide that listed available support groups within the area, educational sessions in the community, educational websites, and books about caregiving. Additionally, they were reminded about the services currently available at the PACE (primarily, respite care and home environmental modifications) and asked if there was anything the IDT could do currently to better assist them. These needs were relayed to the team. Lastly, the social worker assigned to work with the caregiver’s PACE participant was notified of the high burden score. SPSS version 25 was used to determine the CA descriptive statistics. The Pearson r correlation test was run to identify significant relationships between burden level and demographic variables. Lastly, the independent samples t-test was used to analyze responses between the two organization sites. Dissemination and Post-Intervention Assessment Following the final CA completion in January 2019, results were analyzed in February. In March 2019, a follow up meeting occurred with staff at both PACE sites to review the results, discuss clinical implications, outline recommendations for the organization moving forward, and administer the post-intervention ORCA. These sessions were an hour each and attendance was required by all IDT members who were not providing direct participant care during the scheduled time. Attendees included the same IDT members listed for the initial educational CARING FOR THE CAREGIVER 18 session. Following the completion of the post-intervention ORCA by IDT staff, a comprehensive analysis of ORCA and CA results was completed. In April 2019, a leadership meeting was held with the organization’s executive director, the chief operating officer, the clinical director, the directors of interdisciplinary operations for both sites, the quality manager, and the geriatric psychologist. During the leadership meeting an executive summary of the gap analysis was provided. Primary outcomes and recommendations for the organization moving forward were discussed. Project Results CA Results From September 2018 to January 2019, 156 of 171 eligible caregiver completed the CA, 47 at the smaller site and 107 at the larger site, indicating a 91.2% completion rate. Three caregivers declined to participate and twelve were unable to be reached after over a dozen phone calls. Most of the respondents were Caucasian (69.5%) females (66%) with less than a college degree (66%) who were children of the care recipient (45.5%) and approximately 61 years old. Most of the caregivers surveyed earned less than $26K a year (48.6%), were not working (55.9%), and provide over 30 hours of care per week (55.8%) to a demented care recipient (40.6%). The most common stressors identified were providing ADL assistance (63.5%) and like there is not enough time to manage individual needs as well as care recipient needs (57.7%). Descriptive statistics parametric tests were used to analyze the data. This project is like an exploratory pilot study to generate a hypothesis. For the purposes of the CA data analysis, due to the importance of detecting small to moderate differences with a small sample size (p-values >0.05 but <0.10 are referred to as trend), significance was tested at the p <0.10 (Woods, Lentz, CARING FOR THE CAREGIVER 19 Mitchell, Heitkemper & Shaver, 1997). The average burden score on the ZBI-12 was 12.15 (SD=9.04) and the scores ranged from 0 to 48 in both groups (N=156). This score indicates a moderate level of burden (Bedard et. al, 2001). There was a statistically significant difference between caregiver burden at the smaller organization site (M=14.02, SD=10.46) and the larger organization site (M=11.34, SD=8.28), t(154) = -1.71, p=0.089. The listed caregiver demographics were significantly different: education, t(154) = -2.77, p=0.006; annual household income, t(62.91) = -2.85, p=0.006; and caregiver race , t(52.60) = -3.15, p=0.003. The smaller site was more educated, earned more, and were more likely to be mixed race (as opposed to Caucasian or African American) than the larger site. Additionally, while not statistically significant, the smaller site had more caregivers who work outside of the house (M=1.87, SD=1.01) than larger site (M=1.79, SD=1.03). Additionally, more caregivers at the smaller PACE site have dependents (M=1.61, SD=0.49) than caregivers at the larger site (M=1.67, SD=0.47). These numbers could help explain the significantly higher rates of burden at the smaller site because research shows those working or parenting are more likely to experience caregiver burden. Earning them the term the “sandwich generation” that highlights the pressure of numerous responsibilities to multiple generations. Table 3 outlines which caregivers were found to have the highest burden scores by key demographics variable like gender, race, age, and relation to care recipient (Appendix G). The Pearson r correlation test was used to determine what demographic variables were correlated with a high ZBI-12 score. The strength of the relationship (r) rangers from -1 to +1 with r < 0.3 indicating a weak correlation, r of 0.3-0.5 indicating a moderate correlation, r>0.5 indicating a strong correlation, and r of 0 indicates no correlation (Grove & Cipher, 2017). The CARING FOR THE CAREGIVER 20 following stressors identified by the caregivers were found to have a weak correlation to the total ZBI-12 score: aggressive behavior by the care recipient, r(154) = 0.29, p < 0.00; financial stress, r(154) = 0.29, p < 0.00; grief, r(154) = 0.27, p < 0.00; providing ADL assistance, r(154) = 0.26, p < 0.00; care recipient with wandering behavior, r(154) = 0.16, p = 0.05; and providing toileting assistance/incontinence, r(154) = 0.27, p < 0.00. The stressors of limited time, r(154) = 0.37, p < 0.00, and lack of sleep, r(154) = 0.30, p < 0.00, were found to have a moderate correlation to the total ZBI-12 score. One of the primary goals of this gap analysis was for the PACE to learn more about informal caregivers’ interest in support services. When provided a list of services currently offered by PACE as well as services PACE does not offer but is considering offering in the future, respite care was the most commonly selected service with 42.9% (n=67) of those surveyed selecting this as a service that would help. Home modifications were the second most common service selected with 34% (n=53) of respondents saying this would help. Respite care and home modifications are already provided by the PACE. However, caregivers also indicated an interest in services that are not currently offered at the PACE. Support groups and educational sessions were the third and fourth most common service selected with 16.7% (n=26) and 15.4% (n=24) of respondents selecting these respectively. Additionally, 55.1% (n=86) and 50.6% (n=76) of caregivers reported that they would be interest in educational sessions and support groups respectively, if they were offered at PACE. Table 2 outlines which caregivers were found to be interested in educational sessions and support groups by key demographics variable like gender, race, age, and relation to care recipient (Appendix G). ORCA Results CARING FOR THE CAREGIVER 21 Twenty-four staff completed the pre- and post-intervention ORCA – 7 at the smaller site and 17 at the larger site. For analyzing ORCA results, the level of significance was changed to p < 0.05 rather than the p < 0.10 set for analysis of the CA. This change was made because more significant results with stronger relationships exist in the ORCA data. Numerous statistically significant differences in the assessment indicate a difference in the context and facilitation domains at the two sites. Seven of twenty-three items in the context section of the assessment and eleven of thirty-nine items in the facilitation section were found to be significantly different between the two sites. All the significant differences were caused by higher scores at the smaller site. These higher scores indicate greater support, a better culture, and more facilitation surrounding change initiatives at the smaller PACE site. While there were significant differences between scores at the two sites, there were no statistically significant differences found between the pre- and post-intervention ORCA results. This suggests that the intervention did not change staff member’s attitudes surrounding change in the organization. Perceptions regarding context, facilitation, culture, and change were consistent before and after the intervention. Discussion The results indicate which informal caregivers may be at the greatest risk for burden within the PACE community (Appendix G). Certain demographic groups found to have the highest burden level were supported in previous research. Females were seen to have higher burden levels in this EBP and this has been demonstrated in previous research (Chiao, Wu, & Hsiao, 2015; Park, Sung, Kim, Kim, & Lee, 2015). Additionally, a spousal relation to the care recipient has previously been linked to a higher burden risk. However, the results from this study conflict with previous literature with regards to the educational level and income level of those caregivers at the greatest risk for burden. Previous CARING FOR THE CAREGIVER 22 studies have indicated informal caregivers with lower educational and income levels are at the greatest risk for burden (Chiao et al., 2015; Park et al., 2015). However, the results of this gap analysis demonstrate that caregivers with a college degree and an income between $56,000 and $85,000 annually experienced the highest rates of burden. While initially surprising, these variables could be linked to caregiver employment status and the stress well documented within the “sandwich generation” (Do, Cohen, & Brown, 2014). While most research indicates those with a low annual income are at a greater risk for burden, a study by Do et al. (2014) supported the results of this EBP when they found that those in earning $50,000 to $75,000 a year experienced most burden. Adults in middle age (40-64 y.o.) demonstrating the highest rates of caregiver burden is also consistent with the “sandwich generation” being at the greatest risk for burden (Do et al., 2014; Erickson, n.d.). Lastly, the results of this gap analysis differ from previous research because the caregivers of those with congestive heart failure and type II diabetes were found to experience greater burden than those caring for PwD. Numerous studies have found those caring for PwD experience more adverse outcomes secondary to caregiving than those caring for people with other disease processes (Alzheimer’s Association, 2016; Bremer et al., 2015; Dassel & Carr, 2016; Fonareva & Oken, 2014; Goren et al., 2016; National Alliance for Caregiving & AARP, 2015; Valimaki et al., 2016; von Kanel et al., 2014). The caregivers of PwD in this gap analysis may have lower burden levels because of the respite services and day center attendance provided by the PACE. Additionally, since more participants with dementia are already residing in ALF and SNF programs than PACE participants with other diagnoses, it is possible that the informal caregivers of PwD experiencing high burden have already had the care recipients institutionalized. CARING FOR THE CAREGIVER 23 Lastly, the informal caregiver stressors that were found to correlate with burden in this analysis were like those found in previous studies. Aggressive behavior by the care recipient, the provision of ADL assistance, wandering behavior by the care recipient, and a lack of sleep for the caregiver were found to correlate to higher burden in this analysis. These stressors closely link to care recipient factors found to increase burden in previous studies, including: cognitive symptoms, poor functional status, and a high prevalence of behavioral disturbances (Chiao et al., 2015; Park et al., 2015; Peacock, 2013). While this analysis included 91% of the eligible caregivers and had a large sample size, the EBP was limited to assessing only the caregivers of participants enrolled in the PACE program. The PACE program provides a variety of supportive services for their participants and, indirectly, the caregivers that may impact burden scores and distribution of burden. Therefore, the generalization of this knowledge to the larger informal caregiver community should be done cautiously. Additionally, the caregivers included in this survey were limited to one geographical area; therefore, these results may vary in different areas of the country. Lastly, this survey was administered once and does not provide insight into changes of burden throughout the care recipients’ disease progression or over time enrolled in the PACE program. An interesting follow up study would be tracking burden overtime or examining the impact of PACE services on burden throughout time in the program. Implications The results of this gap analysis have implications for PACE program participants, informal caregivers, organization staff, the leadership team, and the entire community. The results lead to recommendations regarding program policy, development, and leadership. Additionally, the intervention design serves as a template for other PACE or community health CARING FOR THE CAREGIVER 24 organizations that seek to better understand and meet the needs of informal caregivers. Impact for Program Participants, Informal Caregivers, and PACE Staff This information can be used by staff to proactively assess and address burden in all informal caregivers while prioritizing those at the greatest risk. For staff this information serves as a guide to improve individualized, proactive informal caregiver support. For informal caregivers, being part of a PACE community that better understands their needs, burden level, and interest in services, means being more supported by the organization. When caregivers feel their needs are heard and they are more empowered by services provided by PACE, this will impact program participants indirectly by improving their quality of life, wellness, and decreasing their risks of institutionalization (Afram et al., 2014). It is important when reviewing the demographic information of those with the greatest burden to remember that this analysis examined correlation and did not establish any relationships of causation. Because of this, and since every informal caregiver is different, it is important not to assume that those with the identified risk variables are experiencing burden. Additionally, it is important never to assume that those who do not demographically fall in the categories of greatest risk are not experiencing burden. Each caregiver should be assessed and supported on an individual basis. However, these results can provide some guidance and serve as “warning signs” of what the IDT should be looking for in their interactions with caregivers. For example, the results indicate a moderate correlation between caregivers feeling they have limited time and a higher burden score. Therefore, if an informal caregiver reports feeling stressed about not having enough time for all their tasks, this should serve as an indicator that the caregiver could be experiencing high burden. The staff member should then utilize the ZBI-12 to further explore the topic. CARING FOR THE CAREGIVER 25 Because every informal caregiver is unique and presents differently when experiencing burden, it is important that caregiver burden is routinely and universally assessed to detect increases in burden early. Therefore, a recommendation stemming from this gap analysis is using the ZBI-12 to assess informal caregiver burden on a standardized and regular basis. Since the PACE program already performs a comprehensive assessment of the caregiver and the program participant upon enrollment and every six months, the ZBI-12 screening should be administered during these assessments at a minimum. The results from the screening should be discussed by the IDT during their assessment meetings and documented in the participant’s chart. Since social workers are the ones who traditionally interact most with informal caregiver, it would be easiest for the assessment to be administered by them. However, any member of the IDT can execute and document the ZBI-12 screening. This change should be reflected in organization policy to ensure that it becomes standard practice. Impact for Leadership Implications from CA results. This gap analysis has numerous implications for leadership at the PACE regarding program development. The moderate burden level of those surveyed indicates that the organization can improve in the area of caregiver support to decrease these scores and subsequently preserve program participant independence. Results from the CA indicate that most of the informal caregivers served by the PACE are interested in attending educational sessions and support groups. These services are not currently provided at the PACE. Given the caregiver interest and current evidence indicating that psychoeducational sessions can mitigate burden, one recommendation stemming from this assessment is that organizational leadership consider adding an educational session, support groups, or a combination of both through CARING FOR THE CAREGIVER 26 psychoeducational sessions. The leadership should consider developing a pilot psychoeducational program for caregivers. Table 2 provides some guidance regarding which caregivers are most interested. This information can be used to develop the pilot program and the recruitment of informal caregivers to attend. CA results indicate that most caregivers are interested in monthly sessions that occur in the morning. Lastly, caregivers at the smaller site were roughly ten percent more likely to be interested in these services than caregivers are the larger site, so if the program can only be initiated at one site, the smaller site should be the initial location. Additionally, the survey indicates that respite care and home modifications are perceived as very helpful by informal caregivers. This serves as validation for the continued provision of these services. If organizational leadership is considering reallocating resources, these services should be bolstered or at a minimum maintained. The departments that provide these services, like home health coordinators, nursing aides, nurses, physical therapists, occupational therapists, and social workers should be expanded and/or well reimbursed for the value they bring. Implications from ORCA results. Results from the pre- and post-intervention ORCA suggest organizational culture at the two sites varies significantly. Results indicate staff at the smaller site perceive greater facilitation and support from organizational leadership. Additionally, the smaller site is much more likely to embrace change initiatives than the larger organization site. This is a bit surprising since resource allocation is proportional for both sites. Given the higher caregiver burden at the smaller site one may hypothesize that the team at this site is not functioning as well or that the participants at this site present more strain on the staff. However, the ORCA results indicate a more supported and happier team that is perceives itself as functioning well at the smaller site. CARING FOR THE CAREGIVER 27 The vast difference in organizational culture and perceived support by leadership at the two sites is surprising. These results do not provide an in depth look at what may be causing these differences. Therefore, the organization leadership should use these results as a warning sign that warrants further investigation with the staff. Subsequent action or procedure changes may be necessary at the larger site to promote greater perceived staff support and facilitation. Lastly, the lack of a significant change in the pre- and post-intervention ORCA results indicate that this intervention did not have an impact of organizational culture, perceived facilitation, or staff attitudes towards change initiatives. There are a few possible explanations for this lack of change. One explanation is that the ORCAs were administered to all members of the IDT, while this intervention primarily involved the social work staff. If the pre- and postORCA was administered solely to the social work team, significant changes may have been present. Another explanation is the low operating cost of this intervention and the project leader being a graduate student. Since the DNP student is not a permanent member of the PACE staff, does not have a leadership position within the organization, and did not have any resources at her dispense to incentives staff involvement, the extent to which she could facilitated the change and support staff through the change process was limited. Impact for National PACEs and Practices The design and outcomes of this gap analysis have implications for PACEs and clinical practice across the country. Other PACE programs hoping to develop caregiver services can use this EBP project as a model for how to assess and address the needs of their caregivers. The CA provides as a useful tool for PACEs that are creating their own caregiver assessment. The results of this gap analysis provide some insight into the burden and needs of informal caregiver of elderly with advance disease processes. However, given the limited scope of this analysis, CARING FOR THE CAREGIVER 28 generalization of these results should be done cautiously. While this EBP project was completed at a PACE program, the results have implications for clinical practices everywhere. The most important implication is the prevalence and impacts of being an informal caregiver. General practitioners and those working with the geriatric population should always inquire if their patients are caregivers. If someone is serving in the caregiver role, it is important that practitioners ask about burden and common physical manifestations, like stress, insomnia, anxiety, depression, changes in eating habits, and sleep. Being a caregiver can have significant impacts of psychological, physical, social, and financial wellness. Therefore, it is the responsibility of everyone within healthcare to be inquiring about caregiving and burden. Quick, valid, and reliable tools like the ZBI-12 should be used to assess and monitor caregiver burden overtime. The findings in this EBP project suggest that nearly half of caregivers are interested in services, like support groups and education about caregiving. Given the wide reaching and profound consequences of unaddressed caregiver burden, it is important that healthcare professionals everywhere make supporting caregivers a priority. Caregivers should be given information about available support resources online or provided within the community and every clinic should make having an updated handout like this a priority. Conclusion With a rapidly aging population, chronic and debilitating disease processes that require extensive caregiving, like dementia, are on the rise in this country. Fortunately, informally caregivers provide most care to loved ones suffering from chronic, debilitating diseases. These caregivers serve as the cornerstone of long-term care in the U.S. and help maintain independence among those who would otherwise be institutionalized. Screening caregivers for burden and CARING FOR THE CAREGIVER 29 supporting them with evidence-based services, like psychoeducational sessions, should be made a national public health priority. This gap analysis provides insight into one caregiving population at a PACE in the Midwest. While results from this analysis should be cautiously applied to other situations, they provide a template for organizations hoping to better understand and meet the needs of the caregivers they serve. Additionally, this EBP project provides insight into which caregivers are the greatest risk for burden as well as those that may be most interested in support service. CARING FOR THE CAREGIVER 30 References Afram, B., Stephan, A., Verbeek, H., Bleijlevens, M.H.C., Suhonen, R., Sutcliffe, C., … Hamers, J.P.H. (2014). Reasons for institutionalization of people with dementia: Informal caregiver reports from 8 European countries. Journal of the American Medical Directors Association, 15(2), 108-116. doi: 10.1016/j.jamda.2013.09.012 Alzheimer’s Association. (2016). 2016 Alzheimer’s disease facts and figures. Retrieved from https://www.alz.org/documents_custom/2016-facts-and-figures.pdf Alzheimer’s Association. (2017). 2017 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 13, 325-373. doi: 10.1016/j.jalz.2017.02.001 Alzheimer’s Disease International. (2015). Dementia statistics. Retrieved from http://www.alz.co.uk/research/statistics Arango-Lasprilla, J.C, Panyavin, I., Merchan, E.J.H., Perrin, P.B., Arroyo-Anillo, E.M., Snipes, D.J., & Arabia, J. (2014). Evaluation of a group cognitive-behavioral dementia caregiver intervention in Latin America. American Journal of Alzheimer’s Disease & Other Dementias, 29(6), 548-555. doi: 10.1177/1533317514523668 Beauchamp, J., Cheh, V., Schmitz, R., Kemper, P., & Hall, J. (2008). The effect of the Program of All-Inclusive Care for the Elderly (PACE) on quality: Final report. Retrieved from https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-andReports/Reports/downloads/Beauchamp_2008.pdf Bedard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41(5), 652-657. CARING FOR THE CAREGIVER 31 Bremer, P., Cabrera, E., Leino-Kilpi, H., Lethin, C., Saks, K., & Sutcliffe, C. (2015). Informal dementia care: Consequences for caregiver health and healthcare use in 8 European countries. Health Policy, 119(11), 1459-1471. doi: 10.1016/j.healthpol.2015.09.014 Chiao, C.Y., Wu, H.S., & Hsiao, C.Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340350. doi: 10.1111/inr.12194 Cohen, S., Kamarch, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health & Social Behavior, 24(4), 385-396. doi: 10.2307/2136404 Dassel, K.B., & Carr, D.C. (2016). Does dementia caregiving accelerate frailty? Findings from the health and retirement study. Gerontologist, 56(3), 444-450. doi: 10.1093/geront/gnu078 Dawson, P. & Andriopoulos, C. (2014). Managing change, creativity, and innovation (2nd ed.).Los Angeles: Sage. Dickinson, C., Dow, J., Grant, G., Hayes, L., Robalino, S., & Robinson, L. (2017). Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews. International Psychogeriatrics, 29(1), 31-43. doi: 10.1017/S1041610216001447 Do, E.K., Cohen, S.A., & Brown, M.A. (2014). Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation. BMC Public Health, 14, 362-370. doi: 10.1186/1471-2458-14-362 DiZazzo-Miller, R., Winston, K., Winkler, S.L., & Dovovan, M.L. (2017). Family caregiver training program (FCTP): A randomized controlled trial. American Journal of Occupational Therapy, 71(5), 1-10. doi: 10.5014/ajot.2017.022459 CARING FOR THE CAREGIVER 32 Ducharme, F., Lachance, L., Levesque, L., Zarit, S.H., & Kergoat, M. (2015). Maintaining the potential of a psycho-educational program: Efficacy of a booster session after an intervention offered family caregivers at disclosure of a relative’s dementia diagnosis. Aging & Mental Health, 19(3), 207-216. doi: 10.1080/13607863.2014.922527 Erikson, E. (n.d.). Erik Erikson’s 8 stages of psychosocial development. Retrieved from http://web.cortland.edu/andersmd/ERIK/sum.HTML Fonareva, I., & Oken, B.S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeratrics, 26(5), 725-749. doi: 10.1017/S1041610214000039 Goren, A., Montgomery, W., Kahle-Wrobleski, K., Nakamura, T., & Ueda, K. (2016). Impact of caring for persons with Alzheimer’s disease or dementia on caregivers’ health outcomes: Findings from a community based survey in Japan. BMC Geriatrics, 16(122), 1-12. doi: 10.1186/s12877-016-0298-y Grove, S.K., & Cipher, D.J. (2017). Statistics for nursing research: A workbook for evidencebased practice (2nd ed). Arlington, TX: Saunders Elsevier. Helfich, C.D., Li, Y.F., Sharp, N.D., & Sales, A.E. (2009). Organizational readiness to change assessment (ORCA): Development of an instrument based on the Promoting Action on Research in Health Services (PARIHS) framework. Implementation Science, 4(38). doi: 10.1186/1748-5908-4-38 Higginson, I.J., Gao, W., Jackson, D., Murray, J., & Harding, R. (2010). Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology, 63, 535-542. doi: 10.1016/j.jclinepi.2009.06.014 Hsu, C.C, Wang, Y.M., Huang, C.R., Sun, F.J., Lin, J.P., Yip, P.K., & Lio, S.I. (2017). Sustained CARING FOR THE CAREGIVER 33 benefit of a psycho-educational training program for dementia caregivers in Taiwan. International Journal of Gerontology, 11(1), 31-35. doi:10.1016/j.ijge.2016.05.004 Johnson, B. (1996). Polarity management: Identifying and managing unsolvable problems (2nd ed.). Amherst, MA: HRD Press. Kucukguclu, O., Soylemez, B.A., Yener, G., & Isik, A.T. (2017). The effects of support groups on dementia caregivers: A mixed method study. Geriatric Nursing [Epub ahead of print]. doi: 10.1016/j.gerinurse.2017.07.008 Marim, C.M., Silva, V., Taminato, M., & Barbosa, D.A. (2013). Effectiveness of educational programs on reducing the burden of caregivers of elderly individuals with dementia: A systematic review. Revista Latino-Americana de Enfermagem, 21, 267-275. Melnyk, B. M., & Fineout-Overhold, E. (2011). Evidence-based practice in nursing and healthcare: A guide to best practice. Philadelphia, PA: Lippincott Williams & Williams. National Alliance for Caregiving & AARP. (2015). Caregiving in the U.S. Retrieved from http://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_FinalReport-June-4_WEB.pdf Park, M., Sung, M., Kim, S.K., Kim, S., & Lee, D.Y. (2015). Multidimensional determinants of family caregiver burden in Alzheimer’s disease. International Psychogeriatrics, 27(8), 1355-1364. doi: 10.1017/S1041610215000460 Peacock, S.C. (2013). The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review. Palliative Support Care, 11(2), 155-168. doi: 10.1017/S1478951512000831 Piersol, C.V., Canton, K., Connor, S.E., Giller, I., Lipman, S., & Sager, S. (2017). Effectiveness of interventions for caregivers of people with Alzheimer’s disease and related major CARING FOR THE CAREGIVER 34 neurocognitive disorders: A systematic review. The American Journal of Occupational Therapy, 71(5), 1-10. doi:10.5014/ajot.2017.027581 Smith, M.J., & Liehr, P.R. (2014). Middle range theory for nursing (3rd ed.). New York, NY: Springer Publishing Company. Stevens, K. R. (2012). Star Model of EBP: Knowledge Transformation. Academic Center for Evidence-based Practice. Retrieved from http://nursing.uthscsa.edu/onrs/starmodel/starmodel.asp U.S. Department of Health and Human Services. (2014). Disability and care needs of older Americans by dementia status: An analysis of the 2011 national health and aging trends study. Retrieved from https://aspe.hhs.gov/report/disability-and-care-needs-olderamericans-dementia-status-analysis-2011-national-health-and-aging-trends-study Valimaki, T.H., Martikainen, J.A., Hongisto, K., Vaatainen, S., Sintonen, H., & Koivisto, A.M. (2016). Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: Results from an ALSOVA follow-up study. Quality of Life Research, 25(3), 687-697. doi: 10.1007/s11136-015-1100-x van der Lee, J., Bakker, T.M., Duivenvoorden, H.J., & Droes, R.M. (2014). Multivariate models of subjective caregiver burden in dementia: A systematic review. Aging Research Reviews, 15, 76-93. doi: 10.1016/j.arr.2014.03.003 van’t Leven, N., Prick, A.J.C., Groenewoud, J.G., Roelofs, P.D.D.M., de Lange, J., & Pot, A.M. (2013). Dyadic interventions for community-dwelling people with dementia and their family caregivers: A systematic review. International Psychogeriatrics, 25(10), 15811603. doi: 10.1017/S1041610213000860 von Kanel, R., Mausbach, B.T., Ancoli-Israel, S., Mills, P.J., Dimsdale, J.E, Patterson, T.L, & CARING FOR THE CAREGIVER 35 Grant, I. (2014). Positive affect and sleep in spousal Alzheimer caregivers: A longitudinal study. Behavioral Sleep Medicine, 12(5), 358-372. doi: 10.1080/15402002.2013.819470 Woods, N.F., Lentz, M., Mitchell, E.S., Heitkemper, M. & Shaver, J. (1997). PMS after 40: Persistence of a stress-related symptom pattern. Research in Nursing & Health, 20, 329– 340. doi:10.1002/(SICI)1098-240X(199708)20:4<329::AID-NUR6>3.0.CO;2-I Veterans Health Administration. (2013). ORCA Slides [PowerPoint slides]. Zwingmann, I., Hoffmann, W., Michalowsky, B., Dreier-Wolfgramm, A., Hertel, J., Wucherer, D.,… Thyrian, J.R. (2017). Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden. Aging & Mental Health [Epub ahead of print]. doi: 10.1080/13607863.2017.1399 CARING FOR THE CAREGIVER Appendix A 36 Table 1 Evaluation Table Citation Arango-Lasprilla et al., (2014). Evaluation of a group cognitivebehavioral dementia caregiver intervention in Latin America Funding: Authors received no financial support for the research, authorship, &/or publication of this article. Bias: None recognized Country: Colombia Conceptual Framework CognitiveBehavioral Model Design/Method Sample/Setting Design: RCT (pre- & posttest, 3-mn follow up test) N: 69 n: 39 (EG) n: 30 (CG) Purpose: Examine effectiveness of a group cognitivebehavioral intervention in improving the mental health of IC of PWD in Cali, Colombia. Setting: Small group (6-10) classroom setting in community center Sample Demographics: No significant differences between EG & IC. Mean age of IC: 59.4 (EG), 55.1 (CG). Female gender of IC: 87.2% (EG), 73.3% (CG). IC spouse of PwD: 17.9% (EG), 20% (CG). IC child of PwD: Major Variables & Definitions IV: “Coping with Frustration” program DV1: IC life satisfaction DV2: IC dep. DV3: IC stress DV4: CB “Coping with Frustration” program: 8 weekly 2-hr sessions educating about & practicing cognitivebehavioral strategies & skills Measurement Analysis Findings Satisfaction with Life Scale (α=0.75), Patient-Health Questionnaire9 item (α=0.88), Perceived Stress Scale (α=0.85), Zarit Burden Interview (α = 0.89) measured Chi-square analysis, ttest, MANOVA, longitudinal multi-level model analyses CG had generally better mental health than EG at baseline (p=0.002). DV1: b=2.47, t(73.95)=2.20 , p= 0.03, no effect of time DV2: b= 1.82, t(71.97)= 2.41, p=0.02, no effect of time DV3: b= 0.85, t(66.42)= 0.83, p=0.41, no effect of time DV4: b= 10.93, t(69.43)= - Decision for Use LOE: II Strengths: RCT design, placebo class offered, detailed discussion of intervention program. Weaknesses: No discussion of attrition rate. Sampling limited to members of the Alzheimer’s Foundation in Colombia. Follow-up tests only occurred immediately & at 3 mns. Attrition not addressed. Conclusions: IC life satisfaction, IC dep., & CB were significantly reduced following the “Coping with Frustration” program. This effect was also observed at the 3-mn posttest. IC stress was not significantly decreased following the program & this remained true at the 3-mn posttest. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting 56.4% (EG), 46.7% (CG). IC mean hr.s of caring per wk: 91.9 (EG), 85.9 (CG). Major Variables & Definitions Measurement 37 Analysis Findings 3.88, p <0.001, no effect of time Inclusion Criteria: Related to PWD; primary IC; providing care for at least 3 mns; knowledgeable about patient’s medical & family history; no self-reported history of neurological & psychiatric disorders or learning disabilities. Citation Conceptual Framework Dickenson et al., (2017). Psychosocial Stress-Coping Perspectives, Cognitive and Design/Method Design: SR of SRs & Mas Attrition: Not discussed Sample/Setting N: 13 Major Variables & Definitions IV1: PE Measurement Analysis Instruments not specified. Measurements AMSTAR Findings IV1: Moderate quality Decision for Use Feasibility/Applicability to pt. population: This study is examining the applicability of this program in Colombia. However, the magnitude of the statistically significant findings indicate that this program could be effective in numerous different cultures. This increases applicability at PACE. The program design is feasible at PACE. Decision for Use LOE: I Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews Funding: National Institute for Health Research Bias: None recognized Country: UK Conceptual Framework Behavioral Theoretical Framework Design/Method Sample/Setting Purpose: To review evidence from existing SRs & Mas of PSI directly targeted at IC of PWD to determine what aspects are most effective at maintaining IC health DS: MEDLINE, CINAHL, EMBASE, PsychInfo, ASSIA, Scopus, Web of Science, Social Services Abstracts, Sociological Abstracts, SCIE, Cochrane, DARE Inclusion Criteria: SR & Mas; included statement of review; IC of PWD; interventions targeted at IC Exclusion Criteria: IC of other conditions; PWD institutionalized Major Variables & Definitions IV2: Information & SG DV1: Dep. or AX DV2: QoL DV3: CB PE: Combines dementia education, skills training, and coping strategies Measurement of AX or dep., CB, & QoL. 38 Analysis Findings evidence. Mixed results. 4/7 studies found significant improvement in IC psychological well-being (CB, dep., QoL, or AX). Active IC participation and group delivery associated with better results. IV2: Moderate quality evidence. Mixed results. ¾ studies found significant improvement in psychological well-being (CB, dep., QoL, or AX). Decision for Use Strengths: Thorough discussion of numerous components in programs to improve IC health outcomes. Inclusion of solely SRs increases breath of evidence examined. Weaknesses: No MA d/t heterogeneity of results and measurements used. Conclusions: Mixed results but overall evidence suggesting IC psychological well-being can be improved using psychoeducational interventions and SGs especially those actively involving Ics. Feasibility/Applicability to pt. population: Psychoeducational and SG interventions may be feasible at PACE. Applicability is limited by the lack of intervention details provided in study (program length, frequency of meeting, content, etc). Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Citation Conceptual Framework Design/Method Sample/Setting DiZazzo-Miller et al., (2017). Family caregiver training program (FCTP): A randomized controlled trial Inferred to be Self-Efficacy Theory Design: RCT (pre- & posttest) N: 36 n: 18 (EG) n: 18 (90minute standard care presentation, CG) Funding: Martha Schnebly Occupational Therapy Fund Bias: None recognized Country: U.S.A. Purpose: Determine if 2hour FCTP decreases dep. & CB among IC of PWD Setting: Training site in community Sample Demographics: IC age between 55-64 y.o.: 38.9% (EG), 55.6% (CG). Female gender of IC: 61.1% (EG), 88.9% (CG). IC spouse of PwD: 44.4% (EG), 11.1% (CG). IC child of PwD: 50% (EG), 77.8% (CG). IC Caucasian ethnicity: 72.2% (EG), Major Variables & Definitions Major Variables & Definitions IV: FCTP DV1: CB DV2: IC dep. & QoL FCTP: 2-hr program involving PowerPoint presentation, handouts, & interactive, hands-on modules practicing ADLs Measurement 39 Analysis Findings Decision for Use Measurement Analysis Findings Decision for Use Zarit Burden Interview (α = 0.89), Beck Dep. Inventory (α =0.81), World Health QoL Measure Brief (α = 0.88) ANOVA, paired t-test No significant changes DV1 or DV2 between pretest and 3 mn. posttest. LOE: II t(17) = 11.05, p = 0.30 Weaknesses: Although adequately powered, relatively small sample size. Minimal details provided regarding setting. Attrition not addressed. Strengths: RCT that measured multiple indicators of psychological health assessed pre & 3-mn post intervention. Conclusions: Results do not indicate improvement in CB, IC dep., or IC QoL. However, scores of CB and dep. were low prior to intervention, which could explain the lack of improvement following intervention. Further research with a larger sample size and more advanced CB is necessary to determine boarder impact of FCTP Feasibility/Applicability to pt. population: Feasible intervention at PACE. Could Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting 38.9% (CG). 40 Major Variables & Definitions Measurement Analysis Findings Major Variables & Definitions IV: PE booster Measurement Analysis Findings Psychological Distress Index 14-item (α=0.81), Carers’ Assessment of Managing Index (α=0.86) Chi-square analyses & ANOVA for comparison of demographi c information IC in booster group had fewer years of schooling than CG & group without booster (F=4.82, p=0.05) Decision for Use be applicable to PACE but PACE IC may have more advanced CB or dep. at time of intervention so results may not be generalizable. Inclusion Criteria: IC for PWD who provide at least 4 hrs of care per week, 18 y.o. or older, fluent in English Exclusion Criteria: Professional or paid caregivers Citation Conceptual Framework Design/Method Ducharme et al., (2014). Maintaining the potential of a psychoeducational program: Efficacy of a booster session after an intervention offered family caregivers at Inferred to be Theory of Caregiver Dynamics Design: RCT (pre- & posttest) Purpose: Evaluate if a 90minute booster session two wks following the six-mn postprogram (individual PE program entitled Learning to Attrition: Not discussed Sample/Setting N: 103 n1: 33 (initial class with booster) n2: 34 (initial class without booster) n3: 36 (CG) Setting: All within community. Most at DV: IC psychological distress PE booster: 90-minute individual booster session with a healthcare Descriptive statistics, prediction analysis (del Booster group vs. CG: del Decision for Use LOE: II Strengths: RCT design, relatively low attrition rate for long duration study (over 1 yr), adequately powered. Weaknesses: Initial sampling limited to participants diagnosed at memory clinics. No placebo for those who did not get the boost session. Details not provided regarding Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation disclosure of a relative’s dementia diagnosis Funding: Alzheimer Society of Canada Bias: None recognized. Country: Canada Conceptual Framework Design/Method Sample/Setting Become a Family Caregiver) assessment further maintains or causes new positive effects after the initial intervention. caregivers’ homes. Sample Demographics: Only significant difference between 3 groups was that n2 had fewer yr.s of schooling (F=4.82, p=0.05). Averaged for all 3 groups. Mean age of IC: 60. Female gender of IC: 80%. Inclusion Criteria: Spouse or child of person with Alzheimer’s disease 65 y.o. or older and diagnosed in the last 9 mns., primary caregiver Exclusion Criteria: IC Major Variables & Definitions provider 6 mns & 2 wks after initial PE intervention. Reviewed initial content & discussed changes in IC circumstances. Measurement 41 Analysis statistic, z value) Findings =0.21, z=1.64, p=0.050 Group without booster vs. CG: del=0.28, z=2.19, p=0.014 Decision for Use setting of boosters that did not take place at home. Limited discussion of sample demographics. Conclusions: Results demonstrate a significantly lower amount of psychological distress when comparing those who had the Learning to Become a Family Caregiver program vs. the control group. However, the booster session Ics do not demonstrate any significant decrease in psychological distress when compared to those who did not have the booster session. This indicates that a booster session may not be necessary to prolong positive psychological effects following a PE intervention. Feasibility/Applicability to pt. population: A booster session similar to that described in the study could be feasible at PACE (performed by trained nursing staff). The applicability is limited by possible variations in initial intervention when compared to Learning to Become a Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Measurement Measurement Analysis N: 53 Major Variables & Definitions IV: PE Setting: Community facilities for those living independently DV1: CB DV2: IC dep. DV3: IC QoL (mental health subset) Sample Demographics: Mean age of IC: 52.5. Female gender of IC: 85.3%. IC spouse of PwD: 29.4%. IC child of PwD: 61.8%. Mean IC yr.s of PE: 4 successive weekly structured 8-hr workshops addressing (1) general information about dementia, (2) Zarit Burden Interview (α = 0.89), General Health Questionnaire12 (α=0.80), Short-Form Health Survey 36-item (α=0.82) Descriptive statistics (simple means, frequencies, & 95% Cis), general estimate equations (Wald chisquared test, standard error, & parameter estimates) participating in SG or receiving psychotherapy at time of study Citation Conceptual Framework Design/Method Hsu et al., (2017). Sustained benefit of a psychoeducational training program for dementia caregivers in Taiwan Inferred to the Chronic Care Model Design: NRNCT (pre-& posttest) LS (at 3-mn, 6mn, & 9-mn) Funding: Not disclosed. Bias: None recognized. Country: Taiwan Purpose: Examine the long-term effects of an intensive, short-term PE program on CB, QoL, & psychological distress among IC for PWD. 42 Major Variables & Definitions Attrition: 13.6% (14/103, 2 from booster group, 5 from without booster group, 7 from control group) Sample/Setting Analysis Findings Decision for Use Family Caregiver. Applicability is also limited by the advanced nature of dementia in most PACE participants as opposed to within 9 mns of initial diagnosis. Findings DV1: Wald Chi-Square 20.65, p < 0.000 DV2: Wald Chi-Square 8.07, p =0.044 DV3: Wald Chi-Square 11.94, p=0.008 Decision for Use LOE: III Strengths: LS design allows for examination of long-term effects of intervention. Weaknesses: High attrition rate, small sample size, not RCT, no CG. Funding not disclosed. Conclusions: Moderate evidence demonstrating the long term IC benefits of intensive short PE intervention. The results should be viewed cautiously due to high attrition rate and nonrandomized sampling. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting education: 14.2 Inclusion Criteria: IC of PWD at least 20 y.o., living with the PWD for at least 6 mns, PWD diagnosed by physician Citation Kucukguclu et al., (2017). The effects of support groups on dementia caregivers: A mixed method study Funding: Not disclosed. Attrition: 35.8% (19/53). Causes included death, unable to contact, & refusal of participant to be reassessed. Sample/Setting Conceptual Framework Design/Method Inferred to be Theory of Caregiver Dynamics Design: Mixed method design – NRNCT (pre- & post-test) & DQ (focus groups) N: 37 (NRNCT portion) Purpose: Examine the effects of SG on CB of IC of PWD. Setting: Nursing faculty building. Quiet room with no interruptions. N: 18 (DQ portion) 43 Major Variables & Definitions medical & welfare services available for PWD, (3) communicatio n skills, environmental modifications, & strategies to manage behavior problems. Measurement Major Variables & Definitions IV: SG including education Measurement Analysis NRNCT: Caregiver Burden Inventory (α = 0.92) NRNCT: Number & percentage distributions , two paired sample t-test DV1: Overall CB DV2: Time dependency burden Analysis Findings Decision for Use Feasibility/Applicability to pt. population: Four 8 hour sessions may limit the feasibility of this intervention as many IC work one or numerous jobs. Additionally, the extensive staff time requirements to lead sessions limits feasibility. Study is applicable to PACE program population but the study sample of Taiwan limits applicability. DQ: Focus groups DQ: Thematic content Findings NRNCT: DV1: t(29)=2.058 p=0.049 DV2: t(29)= -0.242 p= 0.810 DV3: t(29)=0.513 Decision for Use LOE: III Strengths: Mixed methodology allows for holistic view of impacts of SG. Provides a more accurate & full picture of experience. Appropriate analysis on the qualitative & quantitative side. Detailed outlining of intervention. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Bias: None recognized Country: Turkey Conceptual Framework Design/Method Sample/Setting Sample Demographics: Mean age of IC: 58.4. Female gender of IC: 100%. IC spouse of PwD: 40%. IC child of PwD: 60%. IC with college education: 40% Inclusion Criteria: IC of PWD who provided care for at least 4 hrs a day for at least 6 mns Attrition: 18.9% (7/37). Needed to participate in at least 7/10 SG meetings to be included in final analysis Major Variables & Definitions DV3: Developmental burden DV4: Physical burden DV5: Emotional burden DV6: Social burden Q1: What have you experienced since the first day you participated in the SG meetings? Q2: Would you please broadly summarize the whole process of the SG meetings? Q3: What did you gain from these meetings? Measurement 44 Analysis analysis, focus group themes coded independentl y by two experienced qualitative researchers. Discussions to reach consensus when disagreemen t insured inter-rater reliability. Findings p= 0.612 DV4: t(29)=0.890 p=0.381 DV5: t(29)=4.163 p<0.000 DV6: t(29)=2.854 p=0.008 DQ: Theme 1: Having knowledge Theme 2: Calming down Theme 3: Acceptance Decision for Use Weaknesses: Low level of evidence due to the NRNCT format. No CG. All of the IC who attended the SG were female. Funding not disclosed. Conclusions: Strong evidence that SGs decrease IC CB in the domains of emotional & social burden. DQ results indicate these benefits may be caused by SGs aiding in “having knowledge,” “calming down,” and “acceptance.” Feasibility/Applicability to pt. population: The intervention described is feasible at the PACE program. All the necessary staff who contributed to the SGs already work at PACE (physicians, psychiatrists, RNs). Applicability slightly limited by this study occurring in Turkey & all the Ics being female which is not representative of the PACE program population. Additionally, 40% of Ics in this study were college educated. This is not reflective of PACE populations. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Citation Conceptual Framework Design/Method Sample/Setting Marim et al., (2013). Effectiveness of educational programs on reducing the burden of caregivers of elderly individuals with dementia: A systematic review Inferred to be Theory of Caregiver Dynamics Design: SR of RCTs N: 4 n: 403 Purpose: To examine the evidence on how effective education and support programs are in reducing CB in IC of PWD DS: Medline, LILACS, Embase, Cochrane, Web of Science, SciELO, CINAHL Funding: Not disclosed. Bias: None recognized Country: Brazil Inclusion criteria: RCTs with blinded assessments, interventions which provided interdisciplinary education to IC of PWD Major Variables & Definitions SG: Ten 2 hr sessions held at 2-week intervals. Major Variables & Definitions IV: interdisciplinar y education & support DV: CB Measurement 45 Analysis Findings Decision for Use Measurement Analysis Findings Decision for Use Zarit Burden Interview (α = 0.89) MA, MD, SD with a 95% CI, I2 & T2, sensitivity analysis MD with 95% CI: 1.62 [-2.16,1.08] I2: 31% T2: 22 Supporting intervention (p <0.00001) LOE: I Strengths: Specificity of intervention and outcome measurement led to homogeneity of results. Weaknesses: Few studies (removed 3 outlier studies from final analysis). Details of educational intervention not provided. Funding not disclosed. Conclusions: After removing outliner studies, the remaining 4 articles present strong evidence supporting interdisciplinary education & support. Feasibility/Applicability to pt. population: Limited information regarding the types of support & education provided limits applicability as Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Citation Conceptual Framework Design/Method Sample/Setting Piersol et al., (2017). Effectiveness of interventions for caregivers of people with Alzheimer’s disease and related major neurocognitive disorders: A systematic review Inferred to be the Chronic Care Model Design: SR of SRs, RCTs, NRCT, NRNCT, & CSS N: 43 Funding: Not disclosed. Bias: Designed & conducted by the American Occupational Therapy Association but no conflicts recognized. Country: U.S.A. Purpose: Evaluate & synthesize current evidence for effective educational & supportive IC interventions DS: Medline, PsychINFO, CINAHL, Otseeker Inclusion criteria: Peerreviewed scientific literature published in English, interventions within scope of occupational therapy, published from 2006-2014, study participants PWD Exclusion Criteria: Presentations, conference proceedings, Major Variables & Definitions Measurement Major Variables & Definitions IV1: SG IV2: PE Measurement Zarit Burden Interview (α = 0.89), World Health QoL Measure Brief (α = 0.88), State-Trait Anxiety Inventory (α=0.91), Beck Dep. Inventory (α =0.81), Perceived Stress Scale (α=0.85), Caregiver Burden Inventory (α=0.88), Caregiver Burden Scale (α=0.91) DV1: CB DV2: IC Dep. PE: Combines dementia education, skills training, and coping strategies 46 Analysis Findings Decision for Use Analysis Findings well as assessment of feasibility. Decision for Use PRISMA, adaptation of U.S. Preventative Services Task Force rating of evidence strength IV1: Two level I studies, one level II study, & one level III study indicate significant improvement in CB & IC dep. following inperson, professionally led SG. IV2: Six level I studies & one level III study indicate significant reduction in CB & IC dep. LOE: I Strengths: Large sample size with 43 articles. Thorough discussion of evidence regarding different interventions for IC of PWD. Weaknesses: Narrative SR which is lower level of evidence than MA. Heterogeneity of studies. Funding not disclosed. Conclusions: Strong evidence in support of in-person, professionally led SGs & PE to reduce CB & IC dep. Feasibility/Applicability to pt. population: Applicable to PACE population. Feasibility of interventions are difficult to assess due to lack of information regarding SG & PE format & frequency. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Citation Conceptual Framework Design/Method non-peer reviewed literature, dissertations, theses Sample/Setting van’t Leven et al., (2013). Dyadic interventions for communitydwelling people with dementia and their family caregivers: A systematic review Inferred to the Chronic Care Model Design: SR of RCTs N: 23 n: 19,993 Purpose: To provide the best current evidence about PSIs for the IC & PWD that involve face-to-face contact between professional caregivers & both the PWD & the IC DS: PsychInfo, EMBASE, Medline, CINAHL, Cochrane Funding: Not disclosed. Bias: None recognized Country: Netherlands Inclusion Criteria: RCT; PWD > 65 y.o. & their IC; interventions aimed at reducing mental health decline in PWD &/or IC; face-to-face interventions; English, Dutch, German, & French Exclusion Criteria: Major Variables & Definitions Measurement Major Variables & Definitions IV: PSI DV1: IC mood DV2: IC QoL DV3: CB PSI: includes CBT, psychotherapy, family therapy, counseling, AX/dep. management, stress management, education, & SG 47 Analysis Findings Decision for Use Measurement Analysis Findings Decision for Use Zarit Burden Interview (α = 0.89), Caregiver Burden Inventory (α=0.88), Social Support Questionnaire (α=0.94), Perceived Stress Scale (α=0.85), World Health QoL Measure Brief (α = 0.88) Cochrane rating criteria for RCTs & Oxford Centre of Evidencebased Medicine guidelines & GRADE Themes: LOE: I DV1: Moderate to strong evidence. 4/9 studies showed improvement. 3/9 showed statistically significant improvement. Programs lacking communicati on-skills training less effective. Strengths: Thorough discussion of different programs effect on PWD & IC CB. Forest plots for all outcomes reviewed. Use of standardized GRADE tool for evidence evaluation. DV2: Moderate evidence. 7/10 studies found Weaknesses: No MA d/t heterogeneity of results. Funding not disclosed. Conclusions: Mixed reviews but evidence suggesting improvement in IC psychological well-being following PSI. Limited information on program design. Feasibility/Applicability to pt. population: Discussed program similar to PACE where both PWD & IC are Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Multicomponent intervention studies Citation Conceptual Framework Design/Method Sample/Setting Zwingmann et al., (2017). Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden Inferred to be the Chronic Care Model Design: Retrospective secondary analysis of RCT (pre- & posttest) N: 317 n: 226 (DCM, EG) n: 91 (usual care, CG) Purpose: Examine the efficacy of the DCM of IC’s subjective & objective CB. Setting: Interventions at 5 clinic settings serving those living independently. Reassessment interviews of IC took place at participants’ homes. Funding: German Center of Neurodegenerati ve Diseases Sample Major Variables & Definitions Measurement 48 Analysis Findings significant improvement. DV3: Moderate evidence. 13/17 studies showed significant improvement. Major Variables & Definitions IV: DCM DV: CB DCM: Comprehensiv e& interdisciplinar y intervention that manages needs of PWD & IC. Focuses on three major components of care management: medication management, management Measurement Berlin Inventory of Caregivers’ Burden with Dementia Patients (α=0.85) Decision for Use addressed. Included short, long, & hospitalization programs. Hospitalization programs would not be feasible. Short to long IC PSI could be feasible. Limited discussion about what components in programs are most effective at producing outcomes. Limits applicability. Analysis Findings Decision for Use Descriptive statistics, paired ttests, logistic regression analyses, Bonferri corrected pvalues Objective CB: Emotional support EG vs. CG (OR=0.81, SE=0.45, CI95=[-0.008, 1.70], p=0.075, dppc2= -2.527, dcorr=-2.436) LOE: II Subjective CB d/t behavior change: CB d/t cognition of PWD EG Conclusions: Significant difference between EG & CG in 6 of 20 CB areas assessed in favor of DCM decreasing CB. The remaining 14 areas assess showed no significant Strengths: Large sample size, RCT design. Weaknesses: Exclusion of PWD who had visual or hearing impairments (common in elderly). Discrepancy in EG vs. CG size. EG & CG only reassessed once at 12 mns. Attrition not addressed. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Bias: None recognized. Country: Germany Conceptual Framework Design/Method Sample/Setting Demographics: Not significant differences between EG & CG. Mean age of IC: 64.6 (EG), 62.6 (CG). Female gender of IC: 73% (EG), 70.3% (CG). IC spouse of PwD: 46% (EG), 45% (CG). IC child of PwD: 39.8% (EG), 38.5% (CG). Mean IC hr.s of caring per mn: 141.2 (EG), 185.2 (CG). Inclusion criteria: PWD at least 70 y.o. & living at home, have & provide information about IC. Attrition: Not discussed. Major Variables & Definitions of treatment & care, & IC support & education. Program duration was 12 mns. Measurement 49 Analysis Findings Decision for Use vs. CG (OR=0.70, SE=0.41, CI95=[-0.12, 1.51], p=0.093, dppc2= -3.666, dcorr=-3.202), CB d/t aggression & resistance of PWD EG vs. CG (OR=0.80, SE=0.38, CI95=-[0.03, 1.55], p=0.038, dppc2= -3.324, dcorr=-2.988), CB d/t depression of PWD EG vs. CG (OR=0.72, SE=0.40, CI95=[-0.007, 1.50], p=0.072, dppc2= -2.176, dcorr=-2.086), CB d/t late symptoms of PWD EG vs. differences between the CG & EG at the 12 mn. reassessment. Feasibility/Applicability to pt. population: Program described is similar to PACE with interdisciplinary interventions. Aspects of medication management & care management are already being addressed in PACE. Addressing IC education & support could be beneficial at PACE. Incorporating aspects of IC social integration, mental health & financial affairs is more feasible than managing IC physical health. Applicability limited by little information provided regarding modules that comprised interventions. Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value CARING FOR THE CAREGIVER Citation Conceptual Framework Design/Method Sample/Setting Major Variables & Definitions Measurement 50 Analysis Findings Decision for Use CG (OR=1.51, SE=0.51, CI95=[0.51, 2.51], p=0.003, dppc2= -4.766, dcorr=-2.781) Subjective CB d/t perceived conflicts between needs & responsibiliti es to care: CB d/t financial loss (OR=0.97, SE=0.50, CI95= [0.01,1.95], p=0.051, dppc2= -0.312, dcorr=-0.663) Key: AMSTAR- Assessment of Multiple Systematic Reviews measurement tool; ANOVA- analysis of variance; AX – anxiety; CB – caregiver burden; CBT – cognitive behavioral therapy; CG- control group; CI – confidence interval; CSS – cross-sectional study; DCM- Dementia care management; Dep.- depression; DQ – descriptive qualitative; DS – databases searched; DV-dependent variable; d/t - due to; EG – experimental group; FCTP – Family Caregiver Training Program; GRADE – Grades of Recommendation, Assessment, Development and Evaluation Working Group approach to evidence assessment; hr- hour; I2 - ratio of true heterogeneity to total observed variation; IC- informal caregivers; IV- independent variable; LS – longitudinal study; MA- meta-analyses; MANOVA- multivariate analysis of variance; MD – mean difference; mn- months; N-number of studies (if SR) or participants in study; n- number of participants (if SR) or number of participants in subset; NRCT – Non-randomized control trials; NRNCT – nonrandomized noncontrolled trial; PE – psychoeducation; PRISMA – Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PSI- psychosocial intervention; PWD – people with dementia; QoL – quality of life; RCT – randomized control trial; SD – standard deviation; SG – support groups; SR- systematic review; T2 – between study variance; wk- weeks; y.o. – years-old; α - Cronbach’s alpha value Running head: CARING FOR THE CAREGIVER 51 Running head: CARING FOR THE CAREGIVER 52 Appendix B Table 2 Synthesis Table Author Year Design/Level of Evidence: Demographics Age (Mean y.o.) Female (%) Spouse of PwD (%) Child of PwD (%) Setting: Community Dwelling Sample Size/ # of Studies Included Measurement Tools ArangoLasprilla 2014 RCT/II Dickenson DiZazzoMiller 2017 RCT/II Ducharme 59.4 87.2 17.9 55-64 61.1 44.4 60 80 n/p 52.5 85.3 29.4 58.4 100 40 64.6 73 46 56.4 50 n/p 61.8 60 39.8 2017 SR/I Hsu Kucukguclu 2014 RCT/II 2017 2017 NRNCT MMS(NRNCT LS/III + DQ) /III Study Characteristics Marim Piersol 2013 SR/I 2017 SR/I van’t Leven 2013 SR/I Zwingmann 2017 RCT/I X X X X X X X X X X 69 13 studies 36 103 53 37 (NRNCT), 18 (DQ) 4 43 23 317 PHQ-9, PSS, SLS, ZBI Unspecified – AX, Dep., & QoL BDI, WHOQOLBREF, ZBI CAMI GHQ, SF36, ZBI CBI ZBI BDI, CBI, CBS, PSS, STAI, CBI, PHQ9, PSS, SSQ, BIZA-D, CBS, CAMI Key: AX- anxiety; BDI - Beck’s Depression Inventory; BIZA-D – Berlin Inventory of Caregivers’ Burden with Dementia Patients; CAMI – Carers’ Assessment of Managing Index; CBI – Caregiver Burden Inventory; CBS - Caregiver Burden Scale; CBT- cognitive behavioral therapy; CG - control group; d/t – due to; Dep. – depression; DQ – descriptive qualitative; DV- dependent variables; EG – experimental group; GHQ-12 – General Health Questionnaire – 12; hrs- hours; IC – informal caregiver; IV- independent variables; LS – longitudinal study; MMS – mixed method study; mn. – months; n/p – not provided; NRNCT – nonrandomized noncontrolled trial; PDI – Psychological Distress Index; PHQ-9 - Patient Health Questionnaire -9; PSS – Percieved Stress Scale; PwD – person with dementia; QoL – quality of life; RCT – randomized control trial; SF-36 – Short Form Health Survey – 36; SLS – Satisfaction with Life Scale; SR - systematic review; SSQ – Social Support Questionnaire; WHOQOL-BREF – World Health Quality of Life Measure Brief; w/o – without; y.o. – years old; ZBI – Zarit Burden Interview; # - number; * - statistically significant with pvalue ≤ 0.050;  - increased;  - decreased; ≠ - not statistically significant; + - strong level of evidence in SR; ~ - moderate level of evidence in SR CARING FOR THE CAREGIVER 53 WHOQOLBREF, ZBI Duration of Intervention (hrs) 16 CBT Education Booster Course Interdisciplinary Management Skills Training Structured Education Support Groups X Anxiety Caregiver Burden Depression Life Satisfaction Mood Psychological Distress 2 1.5 32 20 12 mn. IV – Interventions X X X X X X X X X X * * * X DV ~ ~ ≠ * ~ ≠ * WHOQOLBREF, ZBI X X X  (* for overall, social, & emotional CB) * X X X X X X X + ~ (* in CB d/t late symptoms, aggression & resistance of PwD) + + Compared to EG w/o booster ≠, Compared to CG * Key: AX- anxiety; BDI - Beck’s Depression Inventory; BIZA-D – Berlin Inventory of Caregivers’ Burden with Dementia Patients; CAMI – Carers’ Assessment of Managing Index; CBI – Caregiver Burden Inventory; CBS - Caregiver Burden Scale; CBT- cognitive behavioral therapy; CG - control group; d/t – due to; Dep. – depression; DQ – descriptive qualitative; DV- dependent variables; EG – experimental group; GHQ-12 – General Health Questionnaire – 12; hrs- hours; IC – informal caregiver; IV- independent variables; LS – longitudinal study; MMS – mixed method study; mn. – months; n/p – not provided; NRNCT – nonrandomized noncontrolled trial; PDI – Psychological Distress Index; PHQ-9 - Patient Health Questionnaire -9; PSS – Percieved Stress Scale; PwD – person with dementia; QoL – quality of life; RCT – randomized control trial; SF-36 – Short Form Health Survey – 36; SLS – Satisfaction with Life Scale; SR systematic review; SSQ – Social Support Questionnaire; WHOQOL-BREF – World Health Quality of Life Measure Brief; w/o – without; y.o. – years old; ZBI – Zarit Burden Interview; # - number; * - statistically significant with p-value ≤ 0.050;  - increased;  - decreased; ≠ - not statistically significant; + - strong level of evidence in SR; ~ - moderate level of evidence in SR CARING FOR THE CAREGIVER QoL Stress ~ ≠ 54 ≠ * ~ Key: AX- anxiety; BDI - Beck’s Depression Inventory; BIZA-D – Berlin Inventory of Caregivers’ Burden with Dementia Patients; CAMI – Carers’ Assessment of Managing Index; CBI – Caregiver Burden Inventory; CBS - Caregiver Burden Scale; CBT- cognitive behavioral therapy; CG - control group; d/t – due to; Dep. – depression; DQ – descriptive qualitative; DV- dependent variables; EG – experimental group; GHQ-12 – General Health Questionnaire – 12; hrs- hours; IC – informal caregiver; IV- independent variables; LS – longitudinal study; MMS – mixed method study; mn. – months; n/p – not provided; NRNCT – nonrandomized noncontrolled trial; PDI – Psychological Distress Index; PHQ-9 - Patient Health Questionnaire -9; PSS – Percieved Stress Scale; PwD – person with dementia; QoL – quality of life; RCT – randomized control trial; SF-36 – Short Form Health Survey – 36; SLS – Satisfaction with Life Scale; SR systematic review; SSQ – Social Support Questionnaire; WHOQOL-BREF – World Health Quality of Life Measure Brief; w/o – without; y.o. – years old; ZBI – Zarit Burden Interview; # - number; * - statistically significant with p-value ≤ 0.050;  - increased;  - decreased; ≠ - not statistically significant; + - strong level of evidence in SR; ~ - moderate level of evidence in SR CARING FOR THE CAREGIVER 55 Appendix C Figure 1 Caregiver Assessment (CA) CARING FOR THE CAREGIVER 56 CARING FOR THE CAREGIVER 57 CARING FOR THE CAREGIVER 58 CARING FOR THE CAREGIVER 59 CARING FOR THE CAREGIVER 60 Appendix D Figure 2 Organizational Readiness for Change Assessment (ORCA) CARING FOR THE CAREGIVER 61 CARING FOR THE CAREGIVER 62 CARING FOR THE CAREGIVER 63 CARING FOR THE CAREGIVER 64 CARING FOR THE CAREGIVER 65 Appendix E Figure 3 Needs of Caregiver and Needs of Care Recipient - Polarity Map CARING FOR THE CAREGIVER 66 Appendix F Figure 4 The Star Model of Transformation CARING FOR THE CAREGIVER 67 Appendix G Table 3 Key CA Outcomes Demographic Group Most Likely to Display Key Outcomes High Burden Interest in Interest in Support (ZBI-12 ≥ 17) Educational Sessions Groups High burden (N=38): High burden (N=38): ZBI-12 Score NA 28 (73.7%) 26 (68.4%) Female (N=103): 31 Female (N=103): 61 Female (N=103): 60 Gender (30.1%) (59.2%) (58.3%) Middle age (40-64 Middle age (N=74): Middle age (N=74): Age yrs.) (N=74): 19 44 (59.5%) 43 (58.1%) (25.7%) Working (N=67): 18 Working (N=67): 38 Working (N=67): 36 Employment (26.9%) (56.7%) (53.7%) Yes (N=52): 15 Yes (N=52): 30 Yes (N=52): 30 Dependents (28.8%) (57.7%) (57.7%) Mixed race (N=13): Mixed race (N=13): 9 Mixed race (N=13): 8 Race 5 (38.5%) (69.2%) (61.5%) College degree College degree College degree Education (N=45): 11 (24.4%) (N=45): 29 (64.4%) (N=45): 24 (53.3%) $56K-85K (N=15): 6 $56K-85K (N=15): $56K-85K (N=15): 9 Income (40%) 10 (66.7%) (60%) Siblings (N=22): 14 Spouses (N=34): 21 Spouses (N=34): 10 Relation to Care (29.4%) (63.6%) (61.8%) Children (N=77): 20 Recipient Spouses (N=34): 19 Children (N=77): 40 (26%) (55.9%) (51.9%) CHF (N=7): 3 Renal failure (N=10): Type II DM (N=8): 6 (42.9%) 8 (80%) (75%) Primary Diagnosis of Type II DM (N=8): 3 Type II DM (N=8): 6 Renal failure (N=10): Care Recipient (37.5%) (75%) 7 (70%) Dementia (N=63): Dementia (N=63): 38 Parkinson’s Dz 18 (28.6%) (60.4%) (N=5): 3 (60%) ADL assistance (N=38) & limited Lack of sleep (N=46): Lack of sleep Primary Stressor time (N=38): 30 & 33 (71.7%) (N=46): 32 (69.6%) 30 (78.9%) CARING FOR THE CAREGIVER 68