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The Maine Savvy Caregiver Project: Translating an Evidence-Based Dementia Family Caregiver Program Within the REAIM Framework a

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Linda W. Samia , AbouEl-Makarim Aboueissa , Jan Halloran & Kenneth Hepburn

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School of Nursing, University of Southern Maine, Portland, Maine, USA b

Department of Mathematics and Statistics, University of Southern Maine, Portland, Maine, USA

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Maine Office of Aging and Disability Services, Augusta, Maine, USA

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Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia, USA Accepted author version posted online: 30 Oct 2013.Published online: 15 May 2014.

To cite this article: Linda W. Samia, AbouEl-Makarim Aboueissa, Jan Halloran & Kenneth Hepburn (2014) The Maine Savvy Caregiver Project: Translating an Evidence-Based Dementia Family Caregiver Program Within the RE-AIM Framework, Journal of Gerontological Social Work, 57:6-7, 640-661, DOI: 10.1080/01634372.2013.859201 To link to this article: http://dx.doi.org/10.1080/01634372.2013.859201

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Journal of Gerontological Social Work, 57:640–661, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0163-4372 print/1540-4048 online DOI: 10.1080/01634372.2013.859201

The Maine Savvy Caregiver Project: Translating an Evidence-Based Dementia Family Caregiver Program Within the RE-AIM Framework Downloaded by [University of Chicago Library] at 14:00 26 December 2014

LINDA W. SAMIA School of Nursing, University of Southern Maine, Portland, Maine, USA

ABOUEL-MAKARIM ABOUEISSA Department of Mathematics and Statistics, University of Southern Maine, Portland, Maine, USA

JAN HALLORAN Maine Office of Aging and Disability Services, Augusta, Maine, USA

KENNETH HEPBURN Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia, USA

This article presents findings of a 3-year Savvy Caregiver Program translational study designed with the RE-AIM framework to create a statewide sustainable infrastructure and improve dementia family caregiver outcomes in one rural state. The RE-AIM dimensions—reach, effectiveness, adoption, implementation and maintenance—were evaluated using mixed methods. The program reached 770 caregivers and 87.7% ( n = 676) participated in the study with 60.5% ( n = 409) residing in rural locations. Participants demonstrated improved confidence, fewer depressive symptoms, and better managed their situation. Trainer resources, partnerships, and adequate planning were essential for program adoption and sustainability. Implications for replication are discussed. KEYWORDS dementia family caregiving, Savvy Program, RE-AIM, Alzheimer’s disease, translation

Caregiver

Received 16 May 2013; revised 21 October 2013; accepted 22 October 2013. Jan Halloran is now affiliated with the Maine Savvy Caregiver Project. Address correspondence to Linda W. Samia, School of Nursing, University of Southern Maine, PO Box 9300, Portland, ME 04104, USA. E-mail: [email protected] 640

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INTRODUCTION Today, about 5.2 million Americans are diagnosed with Alzheimer’s disease (AD) and other dementias; this number may reach 16 million by 2050. The vast majority of persons with dementia (PWD) live in the community and receive 80% of their care from unpaid family caregivers (Institute of Medicine, 2008). These caregivers face difficult demands that generally increase in scope over time and in unpredictable ways. On average, dementia family caregivers provide more extensive care over a longer duration than caregivers of persons with other conditions (Alzheimer’s Association, 2013). Dementia family caregivers assume a clinical role and they have little to no role preparation or requisite training. It is firmly established that these caregivers pay a high price for the care they provide in declining physical and psychological health (Pinquart & Sorensen, 2007; Schulz & Sherwood, 2008). Sustainable infrastructures are essential to support the array of services these caregivers and PWD will require. The RE-AIM framework, consisting of five dimensions (reach, effectiveness, adoption, implementation, and maintenance), offers a comprehensive framework for translating and integrating evidence-based programs into an existing organizational infrastructure in ways that are responsive to variable community needs while also ensuring fidelity to the program’s evidence base and achieving sustainability (Glasgow, Vogt, & Boles, 1999; Kessler et al., 2013). Reach refers to the extent to which a program has reached its targeted population; program impact is a measure of effectiveness; adoption reflects the extent of organizational participation and the representation of these organizations; implementation addresses the extent to which core program elements are delivered with fidelity; and maintenance reflects the degree of organizational sustainability and the long-term effects of individual level target outcomes (Kessler et al., 2013). This article describes how the RE-AIM framework guided the Maine Savvy Caregiver Project (MSCP) in creating a sustainable infrastructure for dementia family caregiver training. The MSCP was a statewide initiative to implement the Savvy Caregiver Program (SCP), a 12-hour evidence-based psychoeducation program, with fidelity to core elements defined in Table 1, while creating a statewide infrastructure for long-term sustainability.

LITERATURE REVIEW Impact of Caregiving The “unexpected career” of family caregiving usually lasts for years. Care involves the management of daily life and the person’s principal and comorbid conditions, entails much more than social and companionate care, and is fundamentally clinical in nature (Alzheimer’s Association, 2013). Dementia

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TABLE 1 Savvy Caregiver Program (SCP) Core Elements SCP Core Elements Dementia information Caregiver self-care

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Contented involvement Managing care and behaviors Decision-making Resources Caregiver mastery

Description The symptoms and progression of dementia; impact on thinking and feelings; implications of losses. Identification of individualized self-care strategies and how to implement them; how to take control of the situation Concept of “fit” to enable performance and successful interactions and outcomes; introduction of the staging system Linking disease stages to structure, support, and effective communication; developing strategies to address common behavioral problems. Introduction to decision making model based on values, options, and likelihood for desired outcome. Types of caregiving families; strengthening families as resources; other resource options. Weekly practice exercises for caregivers to apply to their specific situation with 20-30 minutes of group debriefing

Week 1 2 3 4 5 6 1–6

caregiving places the caregiver at risk for psychological and physical illness (Monin & Schulz, 2009). Caregivers have more disability associated with chronic disease than the general population and are more likely to report high levels of stress, burden, and depression (Pinquart & Sorensen, 2003, 2007). There is greater risk for physiological decline, elevated stress hormones, reduced immune function, and cardiovascular disease (Kiecolt-Glaser et al., 2003; Pinquart & Sorensen, 2007; Schulz & Sherwood, 2008).

Caregiving in Rural Areas Rural family caregivers’ needs are more numerous and complex than those of urban caregivers. Older rural caregivers are more likely to have higher rates of chronic disease and more limitations in activities of daily living, and face the added burden of geographical barriers of distance and transportation when attempting to access resources (National Center for Health Statistics, 2010). Rural caregivers tend be isolated and less aware of resources, and often have fewer available resources (Innes, Morgan, & Kosteniuk, 2011). They often have lower income and less education, and endure the chronic effects of health disparity (Buckwalter & Davis, 2011). Adding to this, rural regions have distinct diversity of values and cultures that must be addressed (Buckwalter & Davis, 2002, 2011; Talley, Chwalisz, & Buckwalter, 2011).

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Maine is the nation’s oldest and most rural state; 15.9% of its population is over 65 years, and 61.3% live in rural areas (US Census Bureau, 2012). Maine’s rural counties have a higher proportion of persons over age 65 (from16.3% to 20.3%) in the seven most rural counties (US Census Bureau, 2010). Maine has an estimated 37,000 persons with AD, a number projected to grow to 53,000 by 2020, contributing to the future demands on family caregivers (Maine State Alzheimer’s Disease Task Force, 2012). Caregiver interventions. Dementia family caregivers benefit from evidence-based interventions to improve self-efficacy, reduce burden, and ameliorate symptoms of depression, stress, and anxiety. Effective programs promote active caregiver participation in the educational intervention and involvement of the caregiver and care receiver in the process (Parker, Mills, & Abbey, 2008). Psycho-education, cognitive behavioral therapy, and multicomponent programs have demonstrated efficacy in work with caregivers (Coon & Evans, 2009; Parker et al., 2008). The psycho-educational approach, which has demonstrated the broadest effect on caregiver outcomes, melds training to better understand the dementing disease with skill building to manage and cope with the caregiving situation (Pinquart & Sorensen, 2006). Cognitive behavioral therapy, a talk therapy approach, is effective for addressing physical, cognitive, and behavioral components of caregiver anxiety (Parker et al., 2008; Pinquart & Sorensen, 2006). Multicomponent programs use a combination of at least two approaches, such as education, individual and/or family counseling, support group treatment, and skill building (Coon & Evans, 2009). Caregivers, however, continue to be underserved or to receive services that are not evidence-based (Centers for Disease Control and Prevention, & the Kimberly-Clark Corporation, 2008; Gitlin, Jacobs, & Earland, 2010). In response to calls from the Institute of Medicine and the National Institutes of Health, a growing number of translation projects are underway to close the 20-year gap between research and practice (Centers for Disease Control and Prevention, & the Kimberly-Clark Corporation, 2008). Many projects, including the MCSP, are funded by the US Administration on Aging (AoA) as part of its Alzheimer’s Disease Supportive Services Program (ADSSP) to support expansion of services for PWD and their caregivers in strategic partnerships with states, with the goal of developing comprehensive and sustainable statewide systems (Administration on Aging, 2008).

MSCP The MSCP is a statewide community-based, caregiver training partnership between Maine’s Office of Aging and Disability Services; the Alzheimer Association, Maine Chapter (Association); Maine’s Aging and Disability Resource Centers/Agencies on Aging (ADRC/AAA); and the University of

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Southern Maine’s School of Nursing. The MSCP sought to implement the SCP to reach family caregivers in all 16 of Maine’s counties. The SCP, built on evidence from previous psychoeducation programs (Hepburn, Tornatore, Center, & Ostwald, 2001; Ostwald, Hepburn, Caron, Burns, & Mantell, 1999) and drawing on stress and coping theory (Lazarus & Folkman, 1984; Pearlin, Mullan, Semple, & Skaff, 1990), posits that caregiving is a career for which most family members have no requisite training. The SCP uses didactic, experiential, self-learning, and coaching techniques to help caregivers acquire the skills, knowledge, and outlook they need to function well in their clinical role, and to do so in a manner that preserves their own well-being. Otswald and colleagues (1999) first tested a 7-week 14-hr psychoeducation program (n = 94) in which the intervention group demonstrated reduced caregiver burden, less negative reaction to disruptive behavior and decreased symptoms of depression (p < 0.05). A decisionmaking component was added to a refined program resulting in reduced caregiver distress for the intervention group (n = 215; p < 0.05; Hepburn et al., 2005). The SCP, further refined and tested by Hepburn and colleagues as a 6-week fully transportable program, resulted in significantly improved caregiver mastery and reduced distress for the intervention group (n = 52; p < 0.05; Hepburn, Lewis, Tornatore, Sherman, & Bremer, 2007). The MSCP sought to evaluate this replicable version, the 6-week SCP, in a variety of community settings with multiple certified trainers.

RE-AIM AND RESEARCH AIMS The goal of the RE-AIM framework is to determine an evidence-based program’s (EBP) strengths, weaknesses, barriers, and opportunities to improve the chances of broad dissemination in real-world settings while maintaining program effectiveness. It seeks a balance between maintaining fidelity to the original program and understanding the impact of modifications and adaptations necessary for unique communities and existing resources (Green & Glasgow, 2006). The framework has been used to evaluate programmatic and policy issues related to a wide range of health conditions and behaviors (Kessler et al., 2013; King, Glasgow, & Leeman-Castillo, 2010). RE-AIM is currently being applied to evaluate translations of evidence-based family caregiver programs to inform policy makers and embed them in sustainable community infrastructures (Centers for Disease Control and Prevention, & the Kimberly-Clark Corporation, 2008; Gitlin et al., 2010). This study sought to evaluate the RE-AIM-driven implementation of MSCP within the context of Maine’s State Plan on Aging (Maine Office of Aging and Disability Services, 2012) that calls for programs to support older people to remain in their home, ensuring a high quality of life, through the provision of easily accessed home and community-based services, including

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TABLE 2 RE-AIM Definitions (http://www.re-aim.org), Maine Savvy Caregiver Project (MSCP) Aims, and Measures

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RE-AIM Dimension

Definition

Reach

Participation rates and representativeness among intended audience

Effectiveness

Impact on key outcomes; consistency of effects across subgroups

Adoption

Extent of organizational participation and representativeness of organizations

Implementation

Level and consistency of delivery of program’s core elements

Maintenance

Agency level: program sustainability Individual level: long-term effectiveness

MSCP Aim Reach a representative sample of rural caregivers with 40% of the targeted population drawn from rural areas of the state Improved caregiver competence, mastery, personal gain, mood, and reaction to care receiver behavior; reduction in depressive symptoms Develop diverse partnerships to expand training options in systems beyond those commonly defined as the aging network Develop and implement a train-the-trainer model and maintain fidelity to core SCP elements with delivery in multiple settings across the state Agency level: create a statewide organizational structure for program implementation and sustainability Individual level: key outcomes are sustained at 12-months post program

supports for family caregivers. Guiding the translation with RE-AIM contributes to the external validity and generalizability of findings by enabling program implementers to interpret and apply findings that are relevant to their settings and to inform decision and policy makers about the range of conditions necessary for a program’s viability (Green & Glasgow, 2006). MSCP aims and the definition for each RE-AIM dimension are presented in Table 2.

METHODS Design In this translational study, we used a quasi-experimental mixed-method approach guided by the RE-AIM framework (Kessler et al., 2013). Reach, adoption, implementation, and organizational maintenance were assessed formatively, to inform the ongoing project, and summatively, to assess program outcomes. Qualitative and quantitative descriptive methods were used.

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Effectiveness and individual level maintenance were assessed using outcome evaluation strategies. The study had University of Southern Maine IRB approval.

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Sample and Procedures The MSCP commenced in November 2008 with the training of one lead and 11 master trainers by one author (Kenneth Hepburn) through a Webinar training sponsored by the Rosalynn Carter Institute. These trainers, the program evaluator, and the project manager formed the implementation team. Planning involved creation of protocols, evaluation tools, schedules, and marketing strategies to accomplish the goals and objectives of the AoA grant. Eligible caregivers were English speaking, at least 18 years of age, and a resident of Maine (or the care receiver was a resident). Caregivers were excluded if the care receiver resided in a long-term care facility such as a nursing home or assisted living facility. Caregivers were recruited by the partner agencies using flyers, public service advertisements, community outreach, e-mail, Web-site postings, program cross fertilization, and professional presentations. Caregivers were screened by MSCP trainers; those not eligible were referred to other caregiver supports. Following intake, caregivers were mailed a preprogram survey packet including a cover letter, the survey, two consent forms, and a return postage-paid envelope. Caregivers returned the survey and consent directly to the University of Southern Maine evaluation team. Seven hundred and seventy caregivers accessed the MSCP and 88.8% (n = 676) agreed to participate in the outcome evaluation (returning their preprogram questionnaire and consent). Baseline demographics were compared for caregivers who consented to participate in the effectiveness evaluation (n = 676) and those who did not (n = 94). With the exception of gender (p = 0.047), there were no significant differences in demographics between groups (p < 0.05). Men were less likely than women to return their preprogram survey packet. Data were managed in IBM SPSS Statistics19, Microsoft Excel 2010, and NVivo8.

Measurement and Analysis Reach. Data for participant reach were collected using the preprogram questionnaire and attendance form. The participant’s zip code provided necessary information to determine rural, frontier, or urban designation and county penetration. The original target reach was 1,250 caregivers, adjusted to 780 with AoA approval as a result of early formative findings. Effectiveness. Outcome measures used in this study, and defined in Table 3, had well-established reliability and validity and were used in the original SCP efficacy studies and other caregiver research (Bradburn, 1989;

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Effectiveness Measures

Description

4–items: measure of caregiver sense of Caregiver self-efficacy in their role Competence Scale (Pearlin et al., 1990) Caregiver Personal 4-items: measures of inner growth stemming from the caregiver role Gain Scale (e.g., becoming aware of inner (Pearlin et al., strengths) 1990) 4- items: measure how well caregivers Caregiver are managing their responsibilities Management of in (a) directing behavior; (b) doing Situation things that are essential and letting (Pearlin et al., other things slide; (c) finding ways 1990) to keep the person with dementia busy; and (d) learning as much as possible about the disease through books, trainings, experts, etc. 3-items: measure of ability to be more Caregiver accepting of the care recipient’s Reduction in condition, stay focused on the Expectation present, and maintain a sense of Scale (Pearlin humor. et al., 1990) 3-items: measure of ability to keep the Making Positive caregiving situation in perspective Comparisons and to identify the more positive Scale (Pearlin aspects of the role. et al., 1990) 3-items: measure of the caregiver’s Caregiver Larger ability to gain a broader perspective Sense of Self of the care recipient’s condition and and Illness Scale draw on faith to keep going. (Pearlin et al., 1990) Caregiver Mastery 7-items: measure of caregiver’s sense Scale (Pearlin & of mastery of role Schooler, 1978) Depression Scale 20-items: measure of caregiver’s (CES-D) symptoms of depression (Radloff, 1977) 10 items: measure of difference Affect (Mood) between positive and negative Balance Scale mood (balance); 5 positive and (Bradburn, 5 negative items 1989) Caregiver Reaction 24 items: measure of severity of caregiver’s reaction to disruptive to Care behavior with consideration of Recipient frequency of behavior. Behavior Scale (Teri et al., 1992)

Scaling 1 to 4: 1 = not at all; 4 = very much 1 to 4: 1 = not at all; 4 = very much 1 to 4: 1 = never; 4 = very often

1 to 4: 1 = never; 4 = very often

1 to 4: 1 = never; 4 = very often 1 to 4: 1 = never; 4 = very often

1 to 4: 1 = strongly disagree; 4 = strongly agree 0 to 3: 0 = rarely or none of the time; 3 = most or all of time∗ 1 = Yes; 0 = No∗∗

Occurrence of behavior: 0 = no; 1 = yes; Reaction to behavior (how much bothered by behavior): 0 = not at all; 4 = extremely

Note. ∗ A score of 16 or higher is indicative of depression. ∗∗ 0 to 5 score on each of the positive or negative scale: negative affect score is subtracted from positive score then add a constant of 5 to avoid negative scores; final scale is 0–10.

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Hepburn et al., 2007; Ostwald et al., 1999; Pearlin et al., 1990; Pearlin & Schooler, 1978; Radloff, 1977; Teri et al., 1992). Measures were collected at baseline (T1), 5 (T2), and 12 months (T3) postprogram. A repeated-measure ANOVA compared mean outcome scores for participants who completed four or more MSCP sessions (n = 594), returned their T2 and T3 questionnaires as of February 2012 (T2 n = 370; T3 n = 250), and remained a caregiver (T2 n = 354; T3 n = 222). The Tukey method was used to perform multiple comparisons for each variable to determine which time point differed with significance (p < 0.05). A two-sample t-test analysis was first conducted to determine if there were any mean differences in baseline scores for key outcome measures comparing T2 respondents and nonrespondents’ baseline scores, and comparing T3 respondents’ and nonrespondents’ baseline scores. There was no significant difference in mean baseline scores when comparing respondents and nonrespondents at either time point (p > 0.05). Caregiver characteristics (age, relationship to care receiver, gender, level of education, and living location) were also examined for differences between respondents and nonrespondents at both time points. T2 respondents were older, averaging 63.23 years (10.98 SD), compared to nonrespondents at 60.48 years (12.87 SD; p < 0.01). This was likely due to the higher response rate from spousal caregivers at T2 (67.9%), as compared to children (53.9%) or other relation (52.0%) at p < 0.05. There was no significant difference for these characteristics at T3, nor was there a significant difference in response rate based on gender, living location, or level of education at T2 or T3 (p > 0.05). Adoption. The extent of agency participation and characteristics that contributed to or impeded program delivery and partnership formation were evaluated to determine the extent of MSCP adoption. Data on characteristics of program delivery such as MSCP workshops delivered as scheduled, group size, delivery setting, marketing strategies, and trainer capacity were collected. The MSCP evaluator (LS) also facilitated a 90-min focus group (n = 10) in April 2010 as a formative method to identify potential facilitators and barriers to adoption. Project coordinators and other master and/or associate trainers participated from each partner agency. The group was audio-taped, and a research assistant took notes. The audio-tape was transcribed, and data were managed with NVivo8. Themes were identified following content analysis of the transcript and notes (Hsieh & Shannon, 2005). Implementation. Project implementation was evaluated with measures of program fidelity; train-the-trainer measures; and program delivery measures. Caregiver data collected from workshop evaluations were aggregated, reported quarterly, and monitored for indications of fidelity breach. Evaluation questions included: The workshop trainer(s) followed the program content; The content of the training was relevant to me as a caregiver; The workshop trainer(s) was (were) effective; and The information presented in

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class was clear. Data from trainer self-report fidelity checklists were reviewed after completion of each training. These served as a reminder of core SCP elements and offered information about program adaptation. Delivery measures included training group size, percent of completers per agency, and differences in participant outcomes between agencies. Trainer measures included a self-report of knowledge and confidence following the MSCP trainer training, trainer attrition, and lead trainer observations guided by a checklist. Maintenance. Individual caregiver maintenance was measured with the repeated measure ANOVA analysis of 12-month outcomes described under effectiveness and with a thematic content analysis of 12-month responses to open-ended questions. Organizational maintenance was evaluated with data collected from semi-structured interviews conducted in spring 2012 with stakeholders from the four original lead partner agencies to explore plans for program sustainability beyond grant funding. Participants included two executive directors, two directors of community services, two family caregiver coordinators (who were also master trainers), one caregiver specialist (also a master trainer), and an administrative assistant responsible for coordination of all MSCP activities for the Association. Notes were taken, transcribed, and analyzed. A summary was provided to each agency for validation of findings.

RESULTS Reach One hundred and five (105) MSCP trainings were delivered from February 2009 through September 2012. Trainings averaged 7.3 caregivers, with a range of 1–17 participants. Maine’s target population was rural caregivers; in fact, 466 participants (60.5%) lived in rural Maine, exceeding the proposed target of 40% and reflective of 61.34 % of Maine’s population residing in rural areas (US Census Bureau, 2012). Of the rural caregivers, 35% (n = 163) lived in frontier areas, defined as Rural-Urban Commuting Areas designated as isolated, small rural census tracts (Rural Assistance Center, 2013). Caregivers were predominately female (82.6%) and White (97.5%). Daughters/daughter-in-laws represented 37.2% of the sample; wives 27.7%; husbands 7.5%; and sons 5.0%. They averaged 62.07 (SD = 12.25) years of age and were highly educated with 74.3% (n = 505) having at least some college education. Many lived with the care receiver (n = 396; 58.6%) and 42.9% had been caregiving for this person 3 or more years. Fifty percent (n = 335) described their health as very good or excellent; 11.9% (n = 80) reported fair to poor health. MSCP reached caregivers in each of Maine’s 16 counties. Piscataquis, the least populous county, with a population density of 4.4 persons per square mile, had the lowest reach at 0.3% (n = 2). The highest

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reach was in Cumberland (n = 123; 16%), Maine’s most densely populated area with 337.2 persons per square mile (US Census Bureau, 2010). Participants reported learning about MSCP via a variety of media. Forty percent learned from an ADRC/AAAs or the Association. Almost 20% learned from news print, 10% learned from support groups, and close to 10% learned from another service provider (typically a social worker, nurse, or physician).

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Effectiveness A repeated measure ANOVA comparing mean T1, T2 and T3 scores was conducted to evaluate program effectiveness using the Tukey method. As Table 4 illustrates, caregivers demonstrated significant improvement between baseline and T2 (p < 0.05) for improved competence; personal gain; management TABLE 4 Repeated Measure ANOVA Comparing M T1 With M T2 and M T3 Measure Caregiver competence Caregiver personal gain Management of the situation Management of expectations Management of comparisons Larger sense of self and illness Caregiver mastery Affect balance score Reaction to behavior Caregiver depression∗∗

Time

M

SD

Groupings∗

1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3 1 2 3

3.00 3.37 3.47 2.96 3.25 3.27 3.04 3.23 3.21 3.24 3.44 3.46 3.11 3.25 3.22 2.90 2.85 2.88 2.79 2.80 2.83 6.81 6.92 6.85 1.68 1.48 1.37 25.12 19.32 21.82

.56 .49 .47 .73 .64 .63 .53 .49 .49 .54 .51 .49 .68 .65 .66 .71 .76 .75 .52 .49 .51 2.89 2.09 2.32 .81 .75 .79 8.08 9.94 10.77

A B B A B B A B B A B B A B AB A A A A A A A A A A B B A B B

Note. ∗ Means that do not share a letter are significantly different (p < 0.05). (T1 CES-D Score ≥ 16; n = 117).

∗∗

p < 0.001 < 0.001 < 0.001 < 0.001 0.005 0.583 0.643 0.767 < 0.001 < 0.001

Depressive symptoms

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of the situation: directing, letting things slide, keeping the care receiver busy; management of more reasonable expectations; and improved ability to make comparisons and see the positive aspects of the caregiver role. Caregivers’ overall reaction to disruptive behaviors improved significantly and those with a baseline CES-D depression score of 16 or greater (n = 117) had reduction of depressive symptoms (p < 0.05). With the exception of making comparisons, these changes were sustained when measured at T3 (p < 0.05). Caregiver mastery did not show significant improvement post intervention. An ANOVA test for difference in means between T1 and T2 was conducted to compare mean differences between partner agencies on key variables listed in Table 3. This was one method used to monitor for variations in program effectiveness. There was no significant difference between agencies on key variables (p < 0.05).

Adoption Two adoption themes identified in the focus group were organizational commitment, resources, and readiness for MSCP marketing; and investment in developing paid associate trainers either within the existing organization or partnership sites. Marketing and recruitment were resource-intensive and greater success was experienced by the agencies with established relationships and champions in the location in which the training was offered. Depth in training resources with provisions for back-up trainers was essential for program stability. Of the four original lead partners, two ADRC/AAAs participated fully in adopting the MSCP. They supplied the necessary infrastructure for trainer development and support, intake, screening, marketing, and program delivery. These agencies embedded the MSCP in their existing Family Caregiver Program (FCP). Each agency had at least two program trainers, with one assuming responsibility for program coordination and fidelity monitoring. These were well-established agencies that had a decentralized infrastructure for program delivery within their service area. These agencies also had experienced previous success with adoption of other EBPs. They created unique delivery models based on existing community resources such as satellite offices and senior and community centers while also forging new partnerships to reach beyond the traditional aging services network where 74% (n = 78) of the MSCP trainings were offered. The most northern and rural ADRC/AAA also had a decentralized infrastructure, several certified trainers, and previous EBP experience. It embedded the program within its FCP, but was challenged by the rurality of its territory and marketing demands. This agency met 58% of its MSCP training commitment (n = 14 trainings), and 57% of the 6-week trainings (n = 8) were held with five or fewer participants. The agency reported relying more on word-of-mouth for recruitment to the trainings, which was evident from

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participant data that indicated 26.1% learned of the MSCP from family or friends. The Alzheimer’s Association had significant staff turnover during the 3-year project, including five MSCP trainers, the executive director, and marketing staff. For most of the project, there was only one trainer serving seven counties, the majority very rural, with the commitment to deliver 16 MSCP trainings per year. In the end, the Association had no trainer resources and was unable to subcontract for this resource. The Association was able to deliver 92% of their contracted MSCP trainings (44), but over the course of 3 years 45% of these trainings (20) were cancelled or rescheduled due to low enrollment or lack of trainer resources. Two new agencies were successful in adopting the MSCP, Maine’s Department of Health and Human Services, and a private nonprofit dementia-care agency. These agencies invested in training resources, collaborated with established ADRC/AAAs to provide trainings in their service territories, and they reached out to caregiver employees and contacts within their established networks to populate MSCP workshops. Their ability to be more selective and restrictive with their service territory was essential to their success as compared to the experience of the Association that had MSCP demands beyond available resources.

Implementation In addition to data collected at T2 and T3, caregivers were asked to complete an anonymous workshop evaluation following the sixth MSCP session. The response from 619 participants was overwhelmingly positive. Most agreed or strongly agreed that they felt more knowledgeable (99%), skillful (96%), and confident (94%) upon completion of the training and that the trainers (99%) and materials (97%) were effective. A Pearson chi-square analysis of these results from the four lead partner agencies revealed significant differences (p < 0.05) for three items: The caregiver’s manual is understandable; The manual tied in well with the material presented in the sessions; and The trainer(s) followed the program content. The variance was seen in one region of the state that had lower rankings on these items. It may be that caregivers are less educated in this rural county; additionally, there is a large population of caregivers of French Canadian descent, and this may contribute to a cultural barrier. Trainers’ fidelity checklists indicated adherence to core program elements, including use of caregiver manual, slides, and trainer manual; provisions for practice and debriefing; and hours of program delivery. Deviations were observed in group size and trainer model. Six to 12 participants per MSCP training was the goal. Thirty-one percent (n = 32) of the trainings included five or fewer participants, which were more prevalent

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in rural communities. The trainer model was adapted and piloted in one ADRC/AAA following the death of its master trainer/program coordinator early in the project. In an effort to continue the program, two family caregiver specialists were trained and certified for the MSCP and then they co-facilitated 6-week sessions, each becoming an expert in 3 weeks of content. They had regular planning and debriefing sessions to ensure seamless program delivery with fidelity. There were no significant differences in MSCP outcomes for this agency. A formal train-the-trainer model with a specific protocol for associate trainer certification was developed and implemented. Associate training and certification involved attendance at a one-day workshop, observation of a 6-week MSCP workshop, and then co-facilitation of a 6-week workshop with master trainer observation and feedback. The original intent was to utilize both employee and volunteer trainers, who had dementia knowledge and experience, and ideally group facilitation experience. In total, 37 trainers were trained (12 master and 25 associate). All master trainers and 18 associate trainers were certified. Seven associate trainers never delivered a MSCP training and no volunteer trainer remained active. The time commitment and complexity of the dyad relationship were reasons given for dropout. Forty-nine percent (n = 18) of the trainers remained active at the end of the project. All trainers had a minimum of a bachelor’s degree and were employed as a family caregiver program coordinator, specialist, or trainer within their organization. Many were social workers.

Maintenance Caregiver effectiveness at 12 months. In addition to measuring outcomes at T3 (see Table 3), caregivers were asked two global questions to evaluate their continued use of MSCP strategies and manual. Most caregivers (n = 196; 90%) agreed or strongly agreed that SCP strategies continued to be useful to them; fewer (n = 104; 48%) agreed or strongly agreed that they continued to use the manual. Responses (n = 167) to the following open-ended question: What change have you made as a result of the Savvy Caregiver Training? were also analyzed at 12 months. Six themes emerged and were strongly endorsed by caregivers: (a) They were able to reestablish a relationship with the care receiver that improved over time, with more acceptance of the situation; (b) they were overwhelmingly more patient with the care receiver; (c) MSCP strategies were used and adapted with changing situations; (d) caregivers took better care of themselves; (e) they had more confidence; and (f) they were thinking about the future. Agency level maintenance. All MSCP lead partners reported that the program was an excellent fit for their agency’s mission. The MSCP is well integrated into two ADRC/AAAs’ FCP, one of several service options, and serves as a feeder program to support groups, respite, and other long-term

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care services. Funding is being pursued via additional ADSSP awards, private donors, and small grants. The northernmost ADRC/AAA is working with a community hospital to seek funding to continue the MSCP and strengthen its marketing capacity. ADRC/AAAs also discussed opportunities to work with retirement communities, especially in the more affluent communities, to secure future program support. At the time of this evaluation, sustainability within the Alzheimer’s Association is tenuous pending opportunities to cover a smaller territory and replenish trainer resources.

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DISCUSSION RE-AIM dimensions were applicable to translating research to practice in the MSCP. The model supported broad participation and proactive planning to anticipate limitations and strategize adjustments throughout all phases of the project. (King et al., 2010; Klesges, Estabrooks, Dzewaltowski, Bull, & Glasgow, 2005). Although the study was conducted in only one rural northeastern state with a predominantly White non-Hispanic population, the framework strengthens its external validity and provides options for generalizing when the conditions and context of the translation indigenous to the community are clearly defined, and outcomes are evaluated broadly from the perspective of multiple stakeholders (Green & Glasgow, 2006; Kessler et al., 2013). It is possible to extrapolate and apply findings to similar conditions in new locations, while considering what might need further translation for different circumstances. Five aims reflective of the RE-AIM dimensions guided this study. The first aim, to reach a representative sample of rural caregivers, was partially met. We reached caregivers in each of Maine’s counties, and we exceeded our rural reach target of 40%. We adjusted our original reach target of 1,280 caregivers to 780 based on formative evaluation findings requiring the team to acknowledge the challenges of rural marketing and recruitment obstacles. A decision was made to offer MSCP trainings with fewer than six caregivers in some rural communities; training locations were adjusted to accommodate access; and heightened attention was given in monthly team conference calls to marketing and recruitment strategies. The sample characteristics, in relation to national statistics, Maine demographics, and previous intervention studies, have implications for the representativeness of reach. Compared to national statistics MSCP caregivers were more apt to be woman (83.6% vs. 62%); older, with 58% versus 23% over the age of 65; of White non-Hispanic race (97.9% vs. 70%); and have some college education or beyond (74.8% vs. 50%; Alzheimer’s Association, 2013). In comparison to previous intervention studies, the MSCP sample was of similar age, however a higher percentage of women and persons of White non-Hispanic race were represented (Parker et al., 2008; Pinquart

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& Sorensen, 2006). It is likely that male caregivers were underrepresented, given that only 51.1% of the state is women and men were less likely to participate in the MSCP evaluation. The findings for race/ethnicity were reflective of Maine demographics. The sample is also underrepresentative of caregivers with lower levels of education given that the state is old, rural, and poor, with only 26.9% who have earned a bachelor’s degree (US Census Bureau, 2012); however, these results are comparable to those of previous studies involving white non-Hispanic participants (Belle et al., 2006; Hepburn et al., 2007). Evaluating program effectiveness was the goal of Aim 2. Outcomes achieved in the original SCP research were replicated in the MSCP, at 5months and sustained at 12-months postprogram, with the exception of caregiver mastery (a 5- and 12-month t-test analysis indicated significantly improved mastery (p = 0.024; 0.017), but this finding was not confirmed in the ANOVA analysis). Maine caregivers were more confident, better able to manage the situation and expectations, and grew from the experience. They were less depressed and had fewer negative reactions to the care receiver’s behavior. Although there was no significant improvement in caregiver mastery, scores remained stable over the course of 12 months, despite the progressive nature of dementing illness and likelihood of greater demands. The third aim, program adoption through diverse partnerships beyond those commonly defined as the aging network, was the most challenging. For the MSCP, adoption was affected not only by program demands but also the 2008 economic downturn. Organizational adoption required that the program be a fit with the agency’s mission and its ability to meet the minimal resource commitment for program development, marketing, coordination, training, and fidelity monitoring. A minimum of two certified trainers at each organization was necessary for program stability, or agency willingness to subcontract for trainer resources. A strong community presence and relationships were essential. Public/private relationships evolved with the rollout of the MSCP which enhanced adoption potential when the aging services network provided the certified trainer, program materials, and intake resources while tapping into space, marketing and client base resources of the partner organization. Typically partners had a shared mission to serve the local community and strengthen the presence and access to their respective organizations. Agencies were most successful with reach and adoption when they partnered with entities that could assist with recruitment and participants could be drawn from existing membership or contacts. Thus, adult education programs advertised the MSCP in their marketing materials; hospitals advertised on their outside signage, in newsletters, and flyers; faith-based communities drew from their congregations. Partners having a local champion, whether internal to the organization or a former MSCP participant, contributed to success.

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Implementation with fidelity to the MSCP evidence base (Aim 4), from the Canadian border to Maine’s southernmost county, was resourceintensive. Fidelity was achieved with closely monitored processes and procedures including a structured training program for all MSCP trainers; a trainer hierarchy with master trainers providing oversight to associate trainers; and MSCP procedure and trainer program manuals. Additional monitoring and correction was accomplished with analysis of workshop evaluation results; review of a fidelity checklist submitted following each training; observation visits made by the project coordinator; and formal discussions in team meetings. Key to success was anticipating fidelity breaches, and having a continuous quality improvement approach to assess and learn from the mistake(s) while moving forward. This approach led to an atmosphere in which team members were willing to share challenges and remain open to solutions that were not punitive. Caregiver outcomes were consistent across sites suggesting there was no significant variability in program delivery. However, there was some variability in one agency with caregivers’ self-report of trainers following the program content. Timely corrective action and remediation was feasible in response to information generated from quarterly reports. Maintenance at the individual and organizational level, the fifth aim, was partially achieved. Caregiver’s 12-month outcomes were improved over baseline and sustained from 5-months post program, although it can be assumed that the care receiver’s dementing disease was progressing. Although this is a positive outcome, it remains unknown whether 12-month nonrespondents remained in a caregiving role and if so, continued to apply learned skills. The MSCP ended with a statewide organizational structure in place to serve all 16 of Maine’s counties with the ADRC/AAAs assuming the lead role in partnership with multiple and varied community organizations. An MSCP Associate Trainer curriculum was in place with plans to offer annual statewide trainings. This infrastructure enabled two additional ADRC/AAAs to join the MSCP and advance the program in their regions. Agencies will offer fewer MSCP trainings, likely one per quarter, when grant funding ceases. This will not meet caregiver demand necessitating significant efforts to forge public/private partnerships to sustain the program. Results from a cost analysis will establish recommendations for a caregiver fee, with provisions for scholarships, post grant funding.

Key Lessons There were four key lessons learned that may also be useful to those implementing other caregiver programs. First, startup planning is labor intensive for an EBP; it takes a minimum of 6 months from the initial trainer training to the offering of the first pilot program. There were multiple simultaneous

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start-up activities that had to be integrated into existing roles in the partner agencies. Stakeholders unanimously agreed that more time was needed at start-up to assimilate the SCP evidence-base, and then create protocols, procedures, and material revisions to support the MSCP translation, while also developing a recruitment strategy and scheduling. Statewide implementation meant considering the unique culture and needs of each region with little direct program experience upon which to draw. A phased implementation might have been beneficial. Although feasibility pilots were conducted in each region, taking a pre-aim approach with earlier and more thorough exploration of potential regional implementation challenges and strategies may have facilitated efforts towards community relationship building, recruitment, and avoidance of program cancellations (Centers for Disease Control and Prevention, & the Kimberly-Clark Corporation, 2008). Second, monitoring and maintaining fidelity requires a multiprong, multilevel approach, and all involved should go open-eyed in to the possibility of fidelity breaches, regardless of the checks and balances in place. Each organization must assume accountability for ongoing program fidelity; and this implies that administrators invest some resources for monitoring fidelity to include observation visits, trainer debriefings, and retraining. A central mechanism is essential to aggregate, analyze, and report data trends and identify outliers. Open and regular communication via team meetings and conference calls is essential. Third, unlike experience with some healthy aging EBPs where volunteer coaches or leaders can facilitate, the MSCP requires that the trainers be employed professionals who are knowledgeable about dementia and caregiving. The complexity of the caregiver dyad, family situation, and the clinical nature of the MSCP with its emphasis on training, rather than support, requires a skilled trainer. Social workers were highly effective in this capacity. Although this is a more costly delivery mechanism, there was less turnover among the employed certified trainers. Because some trainer turnover is inevitable, program maintenance is dependent on having a formal mechanism to timely certify and replace trainers in all regions of the state. Finally, reaching a more representative sample of Maine dementia family caregivers will likely require further program adaptations. Although rural caregivers accessed the MSCP and were as likely to complete the program as were urban caregivers, there was less penetration in the most rural counties; rural groups were small, and several trainings were cancelled or rescheduled. Rural caregivers reported barriers of distance and limited respite. Given that we reached 770 of Maine’s estimated 147,000 unpaid dementia family caregivers, there is more work to be done. Consideration was given to consolidating the content to fewer sessions; however, MSCP participants and trainers discouraged this adaptation due to the intensity of content and time needed for practice and reinforcement of new learning. Thus, there are

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implications for adapting the MSCP to reach those caregivers where 6 weeks might be a barrier, while also preserving the evidence-base. We must also consider that we reached a highly educated group of caregivers who were women. Strengthening partnerships between the aging services network, social services, health care providers, and employers, to raise awareness and invite more diverse caregivers to the MSCP, is one strategy to reach a more representative group. Future consideration for a statewide dementia-capable infrastructure must be given to innovative strategies using distance training and telehealth modalities (Talley et al., 2011). Caregivers must be engaged in a participatory process to advise on preferred technologies, frequency of face-to-face encounters, and format and content of supporting resources. The RE-AIM framework will have further utility to guide focused planning and evaluation of a technologically enhanced psychoeducation program and other dementia and caregiver programs.

ACKNOWLEDGMENTS The authors gratefully acknowledge all Maine Savvy Caregiver Project team members and family caregivers.

FUNDING This project was supported in part by grant number 90AE0321/01, from the US Administration for Community Living, US Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express their findings and conclusions freely. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy.

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The Maine Savvy Caregiver Project: translating an evidence-based dementia family caregiver program within the RE-AIM Framework.

This article presents findings of a 3-year Savvy Caregiver Program translational study designed with the RE-AIM framework to create a statewide sustai...
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