The Maine Savvy Caregiver Project - elitehomework.com · gram reached 770 caregivers and 87.7% (n = 676) participated in the study with 60.5% (n = 409) residing in rural locations

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The Maine Savvy Caregiver Project:Translating an Evidence-Based DementiaFamily Caregiver Program Within the RE-AIM FrameworkLinda W. Samiaa, AbouEl-Makarim Aboueissab, Jan Halloranc &Kenneth Hepburnd

a School of Nursing, University of Southern Maine, Portland, Maine,USAb Department of Mathematics and Statistics, University of SouthernMaine, Portland, Maine, USAc Maine Office of Aging and Disability Services, Augusta, Maine, USAd Nell Hodgson Woodruff School of Nursing, Emory University,Atlanta, Georgia, USAAccepted author version posted online: 30 Oct 2013.Publishedonline: 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 CaregiverProgram 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, 2014Copyright © Taylor & Francis Group, LLCISSN: 0163-4372 print/1540-4048 onlineDOI: 10.1080/01634372.2013.859201

The Maine Savvy Caregiver Project: Translatingan Evidence-Based Dementia Family Caregiver

Program Within the RE-AIM Framework

LINDA W. SAMIASchool of Nursing, University of Southern Maine, Portland, Maine, USA

ABOUEL-MAKARIM ABOUEISSADepartment of Mathematics and Statistics, University of Southern Maine, Portland,

Maine, USA

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

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

This article presents findings of a 3-year Savvy Caregiver Programtranslational study designed with the RE-AIM framework to createa statewide sustainable infrastructure and improve dementiafamily caregiver outcomes in one rural state. The RE-AIMdimensions—reach, effectiveness, adoption, implementation andmaintenance—were evaluated using mixed methods. The pro-gram reached 770 caregivers and 87.7% (n = 676) participatedin the study with 60.5% (n = 409) residing in rural locations.Participants demonstrated improved confidence, fewer depressivesymptoms, and better managed their situation. Trainer resources,partnerships, and adequate planning were essential for programadoption and sustainability. Implications for replication are dis-cussed.

KEYWORDS dementia family caregiving, Savvy CaregiverProgram, RE-AIM, Alzheimer’s disease, translation

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]

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The Maine Savvy Caregiver Project 641

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 commu-nity and receive 80% of their care from unpaid family caregivers (Instituteof Medicine, 2008). These caregivers face difficult demands that generallyincrease in scope over time and in unpredictable ways. On average, dementiafamily caregivers provide more extensive care over a longer duration thancaregivers of persons with other conditions (Alzheimer’s Association, 2013).Dementia family caregivers assume a clinical role and they have little tono role preparation or requisite training. It is firmly established that thesecaregivers pay a high price for the care they provide in declining physicaland psychological health (Pinquart & Sorensen, 2007; Schulz & Sherwood,2008).

Sustainable infrastructures are essential to support the array of servicesthese caregivers and PWD will require. The RE-AIM framework, consisting offive dimensions (reach, effectiveness, adoption, implementation, and main-tenance), offers a comprehensive framework for translating and integratingevidence-based programs into an existing organizational infrastructure inways that are responsive to variable community needs while also ensur-ing fidelity to the program’s evidence base and achieving sustainability(Glasgow, Vogt, & Boles, 1999; Kessler et al., 2013). Reach refers to the extentto which a program has reached its targeted population; program impactis a measure of effectiveness; adoption reflects the extent of organizationalparticipation and the representation of these organizations; implementationaddresses the extent to which core program elements are delivered withfidelity; and maintenance reflects the degree of organizational sustainabilityand the long-term effects of individual level target outcomes (Kessler et al.,2013). This article describes how the RE-AIM framework guided the MaineSavvy Caregiver Project (MSCP) in creating a sustainable infrastructure fordementia family caregiver training. The MSCP was a statewide initiative toimplement the Savvy Caregiver Program (SCP), a 12-hour evidence-basedpsychoeducation 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. Careinvolves the management of daily life and the person’s principal and comor-bid conditions, entails much more than social and companionate care, andis fundamentally clinical in nature (Alzheimer’s Association, 2013). Dementia

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642 L. W. Samia et al.

TABLE 1 Savvy Caregiver Program (SCP) Core Elements

SCP Core Elements Description Week

Dementiainformation

The symptoms and progression of dementia;impact on thinking and feelings; implications oflosses.

1

Caregiver self-care Identification of individualized self-care strategiesand how to implement them; how to takecontrol of the situation

2

Contentedinvolvement

Concept of “fit” to enable performance andsuccessful interactions and outcomes;introduction of the staging system

3

Managing care andbehaviors

Linking disease stages to structure, support, andeffective communication; developing strategies toaddress common behavioral problems.

4

Decision-making Introduction to decision making model based onvalues, options, and likelihood for desiredoutcome.

5

Resources Types of caregiving families; strengthening familiesas resources; other resource options.

6

Caregiver mastery Weekly practice exercises for caregivers to apply totheir specific situation with 20-30 minutes ofgroup debriefing

1–6

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

Caregiving in Rural Areas

Rural family caregivers’ needs are more numerous and complex than thoseof urban caregivers. Older rural caregivers are more likely to have higherrates of chronic disease and more limitations in activities of daily liv-ing, and face the added burden of geographical barriers of distance andtransportation when attempting to access resources (National Center forHealth Statistics, 2010). Rural caregivers tend be isolated and less awareof resources, and often have fewer available resources (Innes, Morgan, &Kosteniuk, 2011). They often have lower income and less education, andendure the chronic effects of health disparity (Buckwalter & Davis, 2011).Adding to this, rural regions have distinct diversity of values and culturesthat 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 populationis 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 projectedto grow to 53,000 by 2020, contributing to the future demands on familycaregivers (Maine State Alzheimer’s Disease Task Force, 2012).

Caregiver interventions. Dementia family caregivers benefit fromevidence-based interventions to improve self-efficacy, reduce burden, andameliorate symptoms of depression, stress, and anxiety. Effective programspromote active caregiver participation in the educational intervention andinvolvement 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 withcaregivers (Coon & Evans, 2009; Parker et al., 2008). The psycho-educationalapproach, which has demonstrated the broadest effect on caregiver out-comes, melds training to better understand the dementing disease withskill 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 componentsof 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 grouptreatment, and skill building (Coon & Evans, 2009).

Caregivers, however, continue to be underserved or to receive servicesthat 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 Institutesof Health, a growing number of translation projects are underway to closethe 20-year gap between research and practice (Centers for Disease Controland 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) tosupport expansion of services for PWD and their caregivers in strategicpartnerships with states, with the goal of developing comprehensive andsustainable statewide systems (Administration on Aging, 2008).

MSCP

The MSCP is a statewide community-based, caregiver training partnershipbetween Maine’s Office of Aging and Disability Services; the AlzheimerAssociation, Maine Chapter (Association); Maine’s Aging and DisabilityResource 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 theSCP 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 caregivingis a career for which most family members have no requisite training. TheSCP uses didactic, experiential, self-learning, and coaching techniques tohelp caregivers acquire the skills, knowledge, and outlook they need tofunction well in their clinical role, and to do so in a manner that preservestheir own well-being. Otswald and colleagues (1999) first tested a 7-week14-hr psychoeducation program (n = 94) in which the intervention groupdemonstrated reduced caregiver burden, less negative reaction to disruptivebehavior and decreased symptoms of depression (p < 0.05). A decision-making component was added to a refined program resulting in reducedcaregiver distress for the intervention group (n = 215; p < 0.05; Hepburnet al., 2005). The SCP, further refined and tested by Hepburn and colleaguesas a 6-week fully transportable program, resulted in significantly improvedcaregiver mastery and reduced distress for the intervention group (n = 52;p < 0.05; Hepburn, Lewis, Tornatore, Sherman, & Bremer, 2007). The MSCPsought to evaluate this replicable version, the 6-week SCP, in a variety ofcommunity settings with multiple certified trainers.

RE-AIM AND RESEARCH AIMS

The goal of the RE-AIM framework is to determine an evidence-based pro-gram’s (EBP) strengths, weaknesses, barriers, and opportunities to improvethe chances of broad dissemination in real-world settings while maintainingprogram effectiveness. It seeks a balance between maintaining fidelity to theoriginal program and understanding the impact of modifications and adap-tations necessary for unique communities and existing resources (Green &Glasgow, 2006). The framework has been used to evaluate programmaticand policy issues related to a wide range of health conditions and behav-iors (Kessler et al., 2013; King, Glasgow, & Leeman-Castillo, 2010). RE-AIMis currently being applied to evaluate translations of evidence-based familycaregiver programs to inform policy makers and embed them in sustainablecommunity 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 ofMSCP within the context of Maine’s State Plan on Aging (Maine Office ofAging and Disability Services, 2012) that calls for programs to support olderpeople to remain in their home, ensuring a high quality of life, through theprovision 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

RE-AIM Dimension Definition MSCP Aim

Reach Participation rates andrepresentativeness amongintended audience

Reach a representative sample ofrural caregivers with 40% ofthe targeted population drawnfrom rural areas of the state

Effectiveness Impact on key outcomes;consistency of effects acrosssubgroups

Improved caregiver competence,mastery, personal gain, mood,and reaction to care receiverbehavior; reduction indepressive symptoms

Adoption Extent of organizationalparticipation andrepresentativeness oforganizations

Develop diverse partnerships toexpand training options insystems beyond thosecommonly defined as the agingnetwork

Implementation Level and consistency of deliveryof program’s core elements

Develop and implement atrain-the-trainer model andmaintain fidelity to core SCPelements with delivery inmultiple settings across thestate

Maintenance Agency level: programsustainability

Agency level: create a statewideorganizational structure forprogram implementation andsustainability

Individual level: long-termeffectiveness

Individual level: key outcomesare sustained at 12-monthspost program

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

METHODS

Design

In this translational study, we used a quasi-experimental mixed-methodapproach guided by the RE-AIM framework (Kessler et al., 2013). Reach,adoption, implementation, and organizational maintenance were assessedformatively, to inform the ongoing project, and summatively, to assess pro-gram outcomes. Qualitative and quantitative descriptive methods were used.

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Effectiveness and individual level maintenance were assessed using out-come evaluation strategies. The study had University of Southern Maine IRBapproval.

Sample and Procedures

The MSCP commenced in November 2008 with the training of one lead and11 master trainers by one author (Kenneth Hepburn) through a Webinartraining sponsored by the Rosalynn Carter Institute. These trainers, the pro-gram evaluator, and the project manager formed the implementation team.Planning involved creation of protocols, evaluation tools, schedules, andmarketing strategies to accomplish the goals and objectives of the AoA grant.

Eligible caregivers were English speaking, at least 18 years of age, anda resident of Maine (or the care receiver was a resident). Caregivers wereexcluded if the care receiver resided in a long-term care facility such as anursing home or assisted living facility.

Caregivers were recruited by the partner agencies using flyers, pub-lic service advertisements, community outreach, e-mail, Web-site postings,program cross fertilization, and professional presentations. Caregivers werescreened by MSCP trainers; those not eligible were referred to other caregiversupports. Following intake, caregivers were mailed a preprogram surveypacket including a cover letter, the survey, two consent forms, and a returnpostage-paid envelope. Caregivers returned the survey and consent directlyto 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 (returningtheir preprogram questionnaire and consent). Baseline demographics werecompared for caregivers who consented to participate in the effectivenessevaluation (n = 676) and those who did not (n = 94). With the exceptionof gender (p = 0.047), there were no significant differences in demograph-ics between groups (p < 0.05). Men were less likely than women to returntheir preprogram survey packet. Data were managed in IBM SPSS Statistics19,Microsoft Excel 2010, and NVivo8.

Measurement and AnalysisReach. Data for participant reach were collected using the preprogram

questionnaire and attendance form. The participant’s zip code provided nec-essary information to determine rural, frontier, or urban designation andcounty penetration. The original target reach was 1,250 caregivers, adjustedto 780 with AoA approval as a result of early formative findings.

Effectiveness. Outcome measures used in this study, and defined inTable 3, had well-established reliability and validity and were used in theoriginal SCP efficacy studies and other caregiver research (Bradburn, 1989;

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TABLE 3 Effectiveness Measures

EffectivenessMeasures Description Scaling

CaregiverCompetenceScale (Pearlinet al., 1990)

4–items: measure of caregiver sense ofself-efficacy in their role

1 to 4: 1 = not at all; 4 = verymuch

Caregiver PersonalGain Scale(Pearlin et al.,1990)

4-items: measures of inner growthstemming from the caregiver role(e.g., becoming aware of innerstrengths)

1 to 4: 1 = not at all; 4 = verymuch

CaregiverManagement ofSituation(Pearlin et al.,1990)

4- items: measure how well caregiversare managing their responsibilitiesin (a) directing behavior; (b) doingthings that are essential and lettingother things slide; (c) finding waysto keep the person with dementiabusy; and (d) learning as much aspossible about the disease throughbooks, trainings, experts, etc.

1 to 4: 1 = never; 4 = veryoften

CaregiverReduction inExpectationScale (Pearlinet al., 1990)

3-items: measure of ability to be moreaccepting of the care recipient’scondition, stay focused on thepresent, and maintain a sense ofhumor.


Making PositiveComparisonsScale (Pearlinet al., 1990)

3-items: measure of ability to keep thecaregiving situation in perspectiveand to identify the more positiveaspects of the role.


Caregiver LargerSense of Selfand Illness Scale(Pearlin et al.,1990)

3-items: measure of the caregiver’sability to gain a broader perspectiveof the care recipient’s condition anddraw on faith to keep going.


Caregiver MasteryScale (Pearlin &Schooler, 1978)

7-items: measure of caregiver’s senseof mastery of role

1 to 4: 1 = strongly disagree;4 = strongly agree

Depression Scale(CES-D)(Radloff, 1977)

20-items: measure of caregiver’ssymptoms of depression

0 to 3: 0 = rarely or none ofthe time; 3 = most or all oftime∗

Affect (Mood)Balance Scale(Bradburn,1989)

10 items: measure of differencebetween positive and negativemood (balance); 5 positive and5 negative items

1 = Yes; 0 = No∗∗

Caregiver Reactionto CareRecipientBehavior Scale(Teri et al.,1992)

24 items: measure of severity ofcaregiver’s reaction to disruptivebehavior with consideration offrequency of behavior.

Occurrence of behavior:0 = no; 1 = yes; Reaction tobehavior (how muchbothered 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 ornegative scale: negative affect score is subtracted from positive score then add a constant of 5 to avoidnegative 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 atbaseline (T1), 5 (T2), and 12 months (T3) postprogram. A repeated-measureANOVA compared mean outcome scores for participants who completed fouror more MSCP sessions (n = 594), returned their T2 and T3 questionnairesas 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 multiplecomparisons for each variable to determine which time point differed withsignificance (p < 0.05).

A two-sample t-test analysis was first conducted to determine if therewere any mean differences in baseline scores for key outcome measurescomparing T2 respondents and nonrespondents’ baseline scores, and com-paring T3 respondents’ and nonrespondents’ baseline scores. There was nosignificant difference in mean baseline scores when comparing respondentsand nonrespondents at either time point (p > 0.05). Caregiver character-istics (age, relationship to care receiver, gender, level of education, andliving location) were also examined for differences between respondentsand nonrespondents at both time points. T2 respondents were older, aver-aging 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 fromspousal caregivers at T2 (67.9%), as compared to children (53.9%) or otherrelation (52.0%) at p < 0.05. There was no significant difference for thesecharacteristics at T3, nor was there a significant difference in response ratebased on gender, living location, or level of education at T2 or T3 (p > 0.05).

Adoption. The extent of agency participation and characteristics thatcontributed to or impeded program delivery and partnership formation wereevaluated to determine the extent of MSCP adoption. Data on characteris-tics of program delivery such as MSCP workshops delivered as scheduled,group size, delivery setting, marketing strategies, and trainer capacity werecollected. The MSCP evaluator (LS) also facilitated a 90-min focus group(n = 10) in April 2010 as a formative method to identify potential facilita-tors and barriers to adoption. Project coordinators and other master and/orassociate trainers participated from each partner agency. The group wasaudio-taped, and a research assistant took notes. The audio-tape was tran-scribed, and data were managed with NVivo8. Themes were identifiedfollowing content analysis of the transcript and notes (Hsieh & Shannon,2005).

Implementation. Project implementation was evaluated with measuresof program fidelity; train-the-trainer measures; and program delivery mea-sures. Caregiver data collected from workshop evaluations were aggre-gated, reported quarterly, and monitored for indications of fidelity breach.Evaluation questions included: The workshop trainer(s) followed the programcontent; The content of the training was relevant to me as a caregiver; Theworkshop 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 reviewedafter completion of each training. These served as a reminder of core SCPelements and offered information about program adaptation. Delivery mea-sures included training group size, percent of completers per agency, anddifferences in participant outcomes between agencies. Trainer measuresincluded a self-report of knowledge and confidence following the MSCPtrainer training, trainer attrition, and lead trainer observations guided by achecklist.

Maintenance. Individual caregiver maintenance was measured with therepeated measure ANOVA analysis of 12-month outcomes described undereffectiveness and with a thematic content analysis of 12-month responsesto open-ended questions. Organizational maintenance was evaluated withdata collected from semi-structured interviews conducted in spring 2012 withstakeholders from the four original lead partner agencies to explore plans forprogram sustainability beyond grant funding. Participants included two exec-utive directors, two directors of community services, two family caregivercoordinators (who were also master trainers), one caregiver specialist (also amaster trainer), and an administrative assistant responsible for coordinationof all MSCP activities for the Association. Notes were taken, transcribed, andanalyzed. A summary was provided to each agency for validation of findings.

RESULTS

Reach

One hundred and five (105) MSCP trainings were delivered from February2009 through September 2012. Trainings averaged 7.3 caregivers, with arange of 1–17 participants. Maine’s target population was rural caregivers; infact, 466 participants (60.5%) lived in rural Maine, exceeding the proposedtarget of 40% and reflective of 61.34 % of Maine’s population residing in ruralareas (US Census Bureau, 2012). Of the rural caregivers, 35% (n = 163) livedin frontier areas, defined as Rural-Urban Commuting Areas designated asisolated, 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 ofage and were highly educated with 74.3% (n = 505) having at least somecollege education. Many lived with the care receiver (n = 396; 58.6%) and42.9% 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 personsper 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 popu-lated area with 337.2 persons per square mile (US Census Bureau, 2010).Participants reported learning about MSCP via a variety of media. Forty per-cent learned from an ADRC/AAAs or the Association. Almost 20% learnedfrom news print, 10% learned from support groups, and close to 10%learned from another service provider (typically a social worker, nurse, orphysician).

Effectiveness

A repeated measure ANOVA comparing mean T1, T2 and T3 scores was con-ducted to evaluate program effectiveness using the Tukey method. As Table 4illustrates, caregivers demonstrated significant improvement between base-line 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 Time M SD Groupings∗ p

Caregiver competence 1 3.00 .56 A2 3.37 .49 B < 0.0013 3.47 .47 B

Caregiver personal gain 1 2.96 .73 A2 3.25 .64 B < 0.0013 3.27 .63 B

Management of the situation 1 3.04 .53 A2 3.23 .49 B < 0.0013 3.21 .49 B

Management of expectations 1 3.24 .54 A2 3.44 .51 B < 0.0013 3.46 .49 B

Management of comparisons 1 3.11 .68 A2 3.25 .65 B 0.0053 3.22 .66 A B

Larger sense of self and illness 1 2.90 .71 A2 2.85 .76 A 0.5833 2.88 .75 A

Caregiver mastery 1 2.79 .52 A2 2.80 .49 A 0.6433 2.83 .51 A

Affect balance score 1 6.81 2.89 A2 6.92 2.09 A 0.7673 6.85 2.32 A

Reaction to behavior 1 1.68 .81 A2 1.48 .75 B < 0.0013 1.37 .79 B

Caregiver depression∗∗ 1 25.12 8.08 A2 19.32 9.94 B < 0.0013 21.82 10.77 B

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

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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 makecomparisons and see the positive aspects of the caregiver role. Caregivers’overall reaction to disruptive behaviors improved significantly and those witha baseline CES-D depression score of 16 or greater (n = 117) had reductionof depressive symptoms (p < 0.05). With the exception of making com-parisons, 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 con-ducted to compare mean differences between partner agencies on keyvariables listed in Table 3. This was one method used to monitor for varia-tions in program effectiveness. There was no significant difference betweenagencies on key variables (p < 0.05).

Adoption

Two adoption themes identified in the focus group were organizational com-mitment, resources, and readiness for MSCP marketing; and investment indeveloping paid associate trainers either within the existing organizationor partnership sites. Marketing and recruitment were resource-intensive andgreater success was experienced by the agencies with established relation-ships and champions in the location in which the training was offered. Depthin training resources with provisions for back-up trainers was essential forprogram stability.

Of the four original lead partners, two ADRC/AAAs participated fullyin adopting the MSCP. They supplied the necessary infrastructure for trainerdevelopment and support, intake, screening, marketing, and program deliv-ery. These agencies embedded the MSCP in their existing Family CaregiverProgram (FCP). Each agency had at least two program trainers, with oneassuming responsibility for program coordination and fidelity monitoring.These were well-established agencies that had a decentralized infrastructurefor program delivery within their service area. These agencies also had expe-rienced previous success with adoption of other EBPs. They created uniquedelivery models based on existing community resources such as satelliteoffices and senior and community centers while also forging new partner-ships 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 infras-tructure, several certified trainers, and previous EBP experience. It embeddedthe program within its FCP, but was challenged by the rurality of its territoryand marketing demands. This agency met 58% of its MSCP training com-mitment (n = 14 trainings), and 57% of the 6-week trainings (n = 8) wereheld with five or fewer participants. The agency reported relying more onword-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 orfriends.

The Alzheimer’s Association had significant staff turnover during the3-year project, including five MSCP trainers, the executive director, and mar-keting staff. For most of the project, there was only one trainer serving sevencounties, the majority very rural, with the commitment to deliver 16 MSCPtrainings per year. In the end, the Association had no trainer resources andwas unable to subcontract for this resource. The Association was able todeliver 92% of their contracted MSCP trainings (44), but over the course of3 years 45% of these trainings (20) were cancelled or rescheduled due to lowenrollment or lack of trainer resources.

Two new agencies were successful in adopting the MSCP, Maine’sDepartment of Health and Human Services, and a private nonprofitdementia-care agency. These agencies invested in training resources, col-laborated with established ADRC/AAAs to provide trainings in their serviceterritories, and they reached out to caregiver employees and contacts withintheir established networks to populate MSCP workshops. Their ability tobe more selective and restrictive with their service territory was essentialto their success as compared to the experience of the Association that hadMSCP demands beyond available resources.

Implementation

In addition to data collected at T2 and T3, caregivers were asked to completean anonymous workshop evaluation following the sixth MSCP session. Theresponse from 619 participants was overwhelmingly positive. Most agreedor 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 ofthese results from the four lead partner agencies revealed significant differ-ences (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 Thetrainer(s) followed the program content. The variance was seen in one regionof the state that had lower rankings on these items. It may be that caregiversare less educated in this rural county; additionally, there is a large popula-tion of caregivers of French Canadian descent, and this may contribute to acultural barrier.

Trainers’ fidelity checklists indicated adherence to core program ele-ments, 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 par-ticipants per MSCP training was the goal. Thirty-one percent (n = 32) ofthe 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 oneADRC/AAA following the death of its master trainer/program coordina-tor early in the project. In an effort to continue the program, two familycaregiver specialists were trained and certified for the MSCP and then theyco-facilitated 6-week sessions, each becoming an expert in 3 weeks of con-tent. They had regular planning and debriefing sessions to ensure seamlessprogram delivery with fidelity. There were no significant differences in MSCPoutcomes for this agency.

A formal train-the-trainer model with a specific protocol for associatetrainer certification was developed and implemented. Associate training andcertification involved attendance at a one-day workshop, observation of a6-week MSCP workshop, and then co-facilitation of a 6-week workshop withmaster trainer observation and feedback. The original intent was to utilizeboth employee and volunteer trainers, who had dementia knowledge andexperience, and ideally group facilitation experience. In total, 37 trainerswere trained (12 master and 25 associate). All master trainers and 18 asso-ciate trainers were certified. Seven associate trainers never delivered a MSCPtraining and no volunteer trainer remained active. The time commitmentand complexity of the dyad relationship were reasons given for dropout.Forty-nine percent (n = 18) of the trainers remained active at the end ofthe project. All trainers had a minimum of a bachelor’s degree and wereemployed as a family caregiver program coordinator, specialist, or trainerwithin their organization. Many were social workers.

MaintenanceCaregiver effectiveness at 12 months. In addition to measuring outcomes

at T3 (see Table 3), caregivers were asked two global questions to evaluatetheir continued use of MSCP strategies and manual. Most caregivers (n = 196;90%) agreed or strongly agreed that SCP strategies continued to be useful tothem; fewer (n = 104; 48%) agreed or strongly agreed that they continued touse 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 stronglyendorsed by caregivers: (a) They were able to reestablish a relationship withthe care receiver that improved over time, with more acceptance of thesituation; (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 theprogram was an excellent fit for their agency’s mission. The MSCP is wellintegrated into two ADRC/AAAs’ FCP, one of several service options, andserves 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, privatedonors, and small grants. The northernmost ADRC/AAA is working with acommunity hospital to seek funding to continue the MSCP and strengthenits marketing capacity. ADRC/AAAs also discussed opportunities to workwith retirement communities, especially in the more affluent communities,to secure future program support. At the time of this evaluation, sustainabil-ity within the Alzheimer’s Association is tenuous pending opportunities tocover a smaller territory and replenish trainer resources.

DISCUSSION

RE-AIM dimensions were applicable to translating research to practice inthe MSCP. The model supported broad participation and proactive planningto anticipate limitations and strategize adjustments throughout all phasesof the project. (King et al., 2010; Klesges, Estabrooks, Dzewaltowski, Bull,& Glasgow, 2005). Although the study was conducted in only one ruralnortheastern state with a predominantly White non-Hispanic population, theframework strengthens its external validity and provides options for gener-alizing when the conditions and context of the translation indigenous to thecommunity are clearly defined, and outcomes are evaluated broadly from theperspective of multiple stakeholders (Green & Glasgow, 2006; Kessler et al.,2013). It is possible to extrapolate and apply findings to similar conditionsin new locations, while considering what might need further translation fordifferent circumstances.

Five aims reflective of the RE-AIM dimensions guided this study. Thefirst aim, to reach a representative sample of rural caregivers, was partiallymet. We reached caregivers in each of Maine’s counties, and we exceededour rural reach target of 40%. We adjusted our original reach target of1,280 caregivers to 780 based on formative evaluation findings requiringthe team to acknowledge the challenges of rural marketing and recruitmentobstacles. A decision was made to offer MSCP trainings with fewer than sixcaregivers in some rural communities; training locations were adjusted toaccommodate access; and heightened attention was given in monthly teamconference calls to marketing and recruitment strategies.

The sample characteristics, in relation to national statistics, Mainedemographics, and previous intervention studies, have implications for therepresentativeness of reach. Compared to national statistics MSCP caregiverswere 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 havesome college education or beyond (74.8% vs. 50%; Alzheimer’s Association,2013). In comparison to previous intervention studies, the MSCP samplewas of similar age, however a higher percentage of women and personsof 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 toparticipate in the MSCP evaluation. The findings for race/ethnicity werereflective of Maine demographics. The sample is also underrepresentativeof 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 CensusBureau, 2012); however, these results are comparable to those of previousstudies involving white non-Hispanic participants (Belle et al., 2006; Hepburnet al., 2007).

Evaluating program effectiveness was the goal of Aim 2. Outcomesachieved in the original SCP research were replicated in the MSCP, at 5-months and sustained at 12-months postprogram, with the exception ofcaregiver mastery (a 5- and 12-month t-test analysis indicated significantlyimproved mastery (p = 0.024; 0.017), but this finding was not confirmed inthe ANOVA analysis). Maine caregivers were more confident, better able tomanage the situation and expectations, and grew from the experience. Theywere less depressed and had fewer negative reactions to the care receiver’sbehavior. Although there was no significant improvement in caregiver mas-tery, scores remained stable over the course of 12 months, despite theprogressive nature of dementing illness and likelihood of greater demands.

The third aim, program adoption through diverse partnerships beyondthose commonly defined as the aging network, was the most challenging.For the MSCP, adoption was affected not only by program demands butalso the 2008 economic downturn. Organizational adoption required thatthe program be a fit with the agency’s mission and its ability to meet theminimal resource commitment for program development, marketing, coordi-nation, training, and fidelity monitoring. A minimum of two certified trainersat each organization was necessary for program stability, or agency willing-ness to subcontract for trainer resources. A strong community presence andrelationships were essential. Public/private relationships evolved with therollout of the MSCP which enhanced adoption potential when the aging ser-vices network provided the certified trainer, program materials, and intakeresources while tapping into space, marketing and client base resources ofthe partner organization. Typically partners had a shared mission to serve thelocal community and strengthen the presence and access to their respectiveorganizations.

Agencies were most successful with reach and adoption when they part-nered with entities that could assist with recruitment and participants couldbe drawn from existing membership or contacts. Thus, adult education pro-grams advertised the MSCP in their marketing materials; hospitals advertisedon their outside signage, in newsletters, and flyers; faith-based communitiesdrew from their congregations. Partners having a local champion, whetherinternal to the organization or a former MSCP participant, contributed tosuccess.

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Implementation with fidelity to the MSCP evidence base (Aim 4),from the Canadian border to Maine’s southernmost county, was resource-intensive. Fidelity was achieved with closely monitored processes andprocedures including a structured training program for all MSCP trainers;a trainer hierarchy with master trainers providing oversight to associatetrainers; and MSCP procedure and trainer program manuals. Additionalmonitoring and correction was accomplished with analysis of workshopevaluation results; review of a fidelity checklist submitted following eachtraining; observation visits made by the project coordinator; and formal dis-cussions in team meetings. Key to success was anticipating fidelity breaches,and having a continuous quality improvement approach to assess and learnfrom the mistake(s) while moving forward. This approach led to an atmo-sphere in which team members were willing to share challenges and remainopen to solutions that were not punitive. Caregiver outcomes were consis-tent across sites suggesting there was no significant variability in programdelivery. However, there was some variability in one agency with caregivers’self-report of trainers following the program content. Timely corrective actionand remediation was feasible in response to information generated fromquarterly reports.

Maintenance at the individual and organizational level, the fifth aim,was partially achieved. Caregiver’s 12-month outcomes were improvedover baseline and sustained from 5-months post program, although it canbe assumed that the care receiver’s dementing disease was progressing.Although this is a positive outcome, it remains unknown whether 12-monthnonrespondents remained in a caregiving role and if so, continued to applylearned skills. The MSCP ended with a statewide organizational structure inplace to serve all 16 of Maine’s counties with the ADRC/AAAs assuming thelead role in partnership with multiple and varied community organizations.An MSCP Associate Trainer curriculum was in place with plans to offer annualstatewide trainings. This infrastructure enabled two additional ADRC/AAAs tojoin the MSCP and advance the program in their regions. Agencies will offerfewer MSCP trainings, likely one per quarter, when grant funding ceases.This will not meet caregiver demand necessitating significant efforts to forgepublic/private partnerships to sustain the program. Results from a cost anal-ysis will establish recommendations for a caregiver fee, with provisions forscholarships, post grant funding.

Key Lessons

There were four key lessons learned that may also be useful to those imple-menting other caregiver programs. First, startup planning is labor intensivefor an EBP; it takes a minimum of 6 months from the initial trainer trainingto 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 partneragencies. Stakeholders unanimously agreed that more time was needed atstart-up to assimilate the SCP evidence-base, and then create protocols, pro-cedures, and material revisions to support the MSCP translation, while alsodeveloping a recruitment strategy and scheduling. Statewide implementationmeant considering the unique culture and needs of each region with littledirect program experience upon which to draw. A phased implementationmight have been beneficial. Although feasibility pilots were conducted ineach region, taking a pre-aim approach with earlier and more thoroughexploration of potential regional implementation challenges and strategiesmay have facilitated efforts towards community relationship building, recruit-ment, and avoidance of program cancellations (Centers for Disease Controland Prevention, & the Kimberly-Clark Corporation, 2008).

Second, monitoring and maintaining fidelity requires a multiprong, mul-tilevel approach, and all involved should go open-eyed in to the possibilityof fidelity breaches, regardless of the checks and balances in place. Eachorganization must assume accountability for ongoing program fidelity; andthis implies that administrators invest some resources for monitoring fidelityto include observation visits, trainer debriefings, and retraining. A centralmechanism is essential to aggregate, analyze, and report data trends andidentify outliers. Open and regular communication via team meetings andconference calls is essential.

Third, unlike experience with some healthy aging EBPs where volun-teer coaches or leaders can facilitate, the MSCP requires that the trainersbe employed professionals who are knowledgeable about dementia andcaregiving. The complexity of the caregiver dyad, family situation, and theclinical nature of the MSCP with its emphasis on training, rather than sup-port, requires a skilled trainer. Social workers were highly effective in thiscapacity. Although this is a more costly delivery mechanism, there wasless turnover among the employed certified trainers. Because some trainerturnover is inevitable, program maintenance is dependent on having a for-mal mechanism to timely certify and replace trainers in all regions of thestate.

Finally, reaching a more representative sample of Maine dementia fam-ily caregivers will likely require further program adaptations. Although ruralcaregivers accessed the MSCP and were as likely to complete the program aswere urban caregivers, there was less penetration in the most rural counties;rural groups were small, and several trainings were cancelled or resched-uled. Rural caregivers reported barriers of distance and limited respite. Giventhat we reached 770 of Maine’s estimated 147,000 unpaid dementia fam-ily caregivers, there is more work to be done. Consideration was givento consolidating the content to fewer sessions; however, MSCP participantsand trainers discouraged this adaptation due to the intensity of content andtime 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 weeksmight be a barrier, while also preserving the evidence-base. We must alsoconsider that we reached a highly educated group of caregivers who werewomen. Strengthening partnerships between the aging services network,social services, health care providers, and employers, to raise awarenessand invite more diverse caregivers to the MSCP, is one strategy to reach amore representative group.

Future consideration for a statewide dementia-capable infrastructuremust be given to innovative strategies using distance training and telehealthmodalities (Talley et al., 2011). Caregivers must be engaged in a participa-tory process to advise on preferred technologies, frequency of face-to-faceencounters, and format and content of supporting resources. The RE-AIMframework will have further utility to guide focused planning and evaluationof a technologically enhanced psychoeducation program and other dementiaand caregiver programs.

ACKNOWLEDGMENTS

The authors gratefully acknowledge all Maine Savvy Caregiver Project teammembers and family caregivers.

FUNDING

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

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Documents

The Maine Savvy Caregiver Project - elitehomework.com · gram reached 770 caregivers and 87.7% (n = 676) participated in the study with 60.5% (n = 409) residing in rural locations