The Gerontologist Advance Access published February 17, 2015

The Gerontologist, 2015 Vol. 00, No. 00, 1–17
doi:10.1093/geront/gnu123

Special Issue:
2015 WHCoA
Downloaded from http://gerontologist.oxfordjournals.org/ by guest on October 22, 2016

Translating Evidence-Based Dementia
Caregiving Interventions into Practice:
State-of-the-Science and Next Steps
Laura N.  Gitlin, PhD,*,1 Katherine  Marx, PhD, MPH,2 Ian H.  Stanley, BA,1
Nancy Hodgson, PhD, RN, FAAN2
Center for Innovative Care in Aging, School of Nursing, Johns Hopkins University, Baltimore, Maryland
Center for Innovative Care in Aging, Johns Hopkins University School of Nursing, Baltimore, Maryland.

1
2

*Address correspondence to Laura N. Gitlin, PhD, Center for Innovative Care in Aging, School of Nursing, Johns Hopkins
University, 525 North Wolfe Street Suite 316, Baltimore, MD 21205. E-mail: lgitlin1@jhu.edu
Received September 25 2014; Accepted November 3 2014.

Decision Editor: Suzanne Meeks, PhD

Over the past 3 decades, more than 200 dementia caregiver interventions have been
tested in randomized clinical trials and found to be efficacious. Few programs have been
translated for delivery in various service contexts, and they remain inaccessible to the
15+ million dementia family caregivers in the United States. This article examines translational efforts and offers a vision for more rapid advancement in this area. We summarize the evidence for caregiver interventions, review published translational efforts,
and recommend future directions to bridge the research-practice fissure in this area. We
suggest that as caregiver interventions are tested external to service contexts, a translational phase is required. Yet, this is hampered by evidentiary gaps, lack of theory to
understand implementation challenges, insufficient funding and unsupportive payment
structures for sustaining programs. We propose ways to advance translational activities
and future research with practical applications.
Key words:  Dementia, Caregiving, Interventions, Translation

For more than 5 million persons in the United States living
with dementia, there are over 15 million family members
providing on-going support including care coordination,

transportation and accompaniment to health visits, daily
assistance with bathing and feeding, and end-of-life care
(Alzheimer’s Association, 2014; Reinhard, Samis, & Levine,

© The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America.
All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Page 1 of 17

rejects care. Smith cut back work hours to provide care. in press). aggressive. behavior management/skills training. and antianxiety medication that has not addressed behaviors most challenging to Mrs. & De Leo. Smith has grown children busy with family life who can provide little help. This investment has yielded a robust corpus of intervention studies demonstrating small but clinically and statistically significant benefits for families. a persistent and widespread gap exists between what is known about effective strategies that support families and diminish the burdens of dementia care. 1995). Smith? This case snapshot of a real family captures the U.S. physical morbidities (Dassel & Carr. She does not fully understand the disease process and has difficulty managing her father’s physical dependencies and behavioral symptoms. No. Her father was diagnosed with probable Alzheimer’s disease 4 years ago. As T3 activities depend upon the scope and nature of evidence previously generated. The U.. struggles to make ends meet and is juggling care demands with need for employment. O’Brien. Smith) at her urban home. 2010). & Desrosiers. Interventions have in turn been summarized in 7 meta-analyses and 17 systematic reviews (Gitlin & Hodgson. we provide recommendations for moving translation forward and future research with practical applications. an action referred to as T3 research. Zimmer‐Gembeck. insufficient funding. p.S. stress. to all patients in all settings of care and improve the health of individuals and populations” (Dougherty & Conway. Schulz. families are at elevated risk for many jeopardies including financial (early retirement. Benefits reported by studies overall are small to moderate. a wide array of proven interventions exist that could help Mrs. 2014. Brodaty and Arasaratnam (2012) identified 23 caregiver interventions demonstrating positive outcomes for families. Her church is a source of support but she cannot attend as previously. However. and environmental redesign. Smith is overwhelmed. In response. which were not included in reviews. Smith. we review the small body of published translational activities from which to identify key activities of this research phase and breaches hampering the field. & Squires. lack of theoretically guided activities. we begin by briefly reviewing the quality of empirical evidence of caregiver interventions as it concerns implications for translation. Families of individuals with dementia do not have access to optimal and evidence-based care. which was halted due to poor tolerance. With disease progression. although the exact number is unclear. counseling/psychotherapy. Smith. and societal costs. Gitlin and Hodgson (in press) identified more than 200 interventions reviewed in 24 meta-analyses and systematic reviews conducted between 1966 and 2013. modest government investments have been directed at developing and testing caregiver interventions. Moore. psycho-educational. Mrs. 2014. familial. Nevertheless. Chen. Interventions reviewed in any one article ranged from 4 to 127 and are complemented by 10 newly tested interventions with positive caregiver outcomes published between 2013 and 2014. reduced paid working hours. burden. . Case Vignette Mrs. self-care/relaxation techniques. The consequences for families providing protracted care for this complex condition are extensive and well documented. Smith anticholinesterase medication. efforts have been directed at purposively transporting proven caregiver interventions from the randomized trial to social service and clinical environments. 2003). 2012). suicidal ideation (O’Dwyer. Bookwala. and has nothing to do. 2010). Moyle.oxfordjournals. health care system is based on the premise that families will assume responsibilities for day-to-day care and assure quality of life and safety of people with dementia (Carbonneau. Lavis. Although there is no agreed-upon classification system. & Fleissner. treatment modalities of proven programs can be categorized as professional support. Next. and dementia (Norton et al. Despite increased interest in translation. Smith. Downloaded from http://gerontologist. resulting in continued elevated individual. T3 research seeks to translate proven interventions for consistent delivery “. suggesting that a strong evidence base exists. A physician initially provided Mr. and Clipp. Finally. and becoming depressed. and physically dependent. Mrs. 2013). This Forum article examines the state of translational efforts to stimulate more rapid movement in this area. and real-world practices and policies for this population. 2319). Caron. How Can We Help Mrs. However.org/ by guest on October 22. and payment structures that exclude families from receiving support. We suggest that translational efforts Page 2 of 17 . Maslow (2012) identified 44 interventions targeting individuals with dementia and/or their family caregivers and suggested more publications of tested programs were forthcoming. impaired life quality (depressive symptomatology. In a comprehensive review. 00. repeats questions. an African American in her early 50s. 00 are necessary yet burdened by evidentiary gaps. few interventions have been implemented in practice. 2001). Hill. 2015 Vol. anxious. over the past decade. Zhang. lives with and provides cares for her father (Mr. Subsequently. Vitaliano. over the past three decades. Eccles. Mrs. & Scanlan. with disease progression. Zhu. 2016 2014). most involve multiple treatment components. he is more agitated. 2008.The Gerontologist. dementia caregiving experience. . A strong evidence base is an important requisite for knowledge translation or moving evidence from research to practice (Grimshaw.

2014. Hence. funding is essential.01) and caregiver negative reactions to behavioral symptoms (effect size  =  0. Kales. Smith are willing to pay. long-distance and multiple carers) whose prevalence is increasing. unclear is what constitutes a meaningful benefit to Mrs. 2006. Gitlin. or Centers for Medicare and Medicaid Services. unknown is what families such as Mrs. 00. Kales. The Administration on Aging (AoA) through the Congressionally mandated Alzheimer’s Disease Supportive Services Program developed a funding category in 2008 devoted to translating caregiver interventions tested in Downloaded from http://gerontologist. but no interventions address these (Reinhard et al. Nichols. Nichols et al. & Hauck. Mrs. or church attendance. 2014. 2010b). 2016 improvements compare more than favorably to pharmacologic trials. grant support for translational efforts specific to dementia caregiver interventions has been limited to four sources. & Pizzi. few studies examine long-term effectiveness or formally test performance with a delivery context. practice guidelines and algorithms for systematically addressing behavioral symptoms (Gitlin. with few exceptions. it may be having more time during the day.. 2012. the Physician Consortium for Performance Improvement’s Dementia Performance Measurement Set recommending routine screening of behavioral symptoms. Funding Mechanisms As this diagnostic phase requires resources (investigator and service partner time). cost effectiveness. Gitlin. 2006. Smith’s life quality (Gitlin. Secondly. opportunities for exercise. Haley. Financial distress and physical burdens of care. Third. Gitlin. it is difficult to discern clinical significance of small changes in common outcomes such as burden. Jutkowitz. No. Smith (Tailored Activity Program. Gitlin et  al. Dennis. skills to manage functional dependence (Care of Persons with Dementia in their Environments [COPE]. 2009). & Hauck. but are not limited to. Hodgson. or mastery. developing and testing interventions have occurred outside of care systems. & Roth. Winter. Further. Callahan et  al.15.. or cost benefits are unknown (Gitlin. To date. but are not limited to. Translational Efforts With few exceptions (Burns. and improvements are often documented for caregivers and persons with dementia (Salloway et  al. Martindale-Adams.006). 2010a. 00 Page 3 of 17 Knowledge Gaps This case vignette also brings to light important limitations in the evidence impacting translation. Correspondingly. Gitlin et al. Health care organizations including social service agencies. are most concerned with utilization and harm reduction. Nevertheless. Winter. are significant triggers for nursing home placement in population-based studies. Samus et al. p = . and provision of caregiver education (Odenheimer et al. 2014). 2003). Exemplars of interventions that could address Mrs. rural. Additionally. Smith experiences. 2008).. Fifth. & Lyketsos. which. Furthermore. p < . Brodaty and Arasaratnam (2012) found significant treatment effects across 20 caregiver interventions for reducing behavioral symptoms (effect size = 0. 2014).. benefits outweigh risks. and at what point along the disease trajectory.. 2006). Spillman & Long. Smith.01 to 0. studies rely on volunteer samples who differ on critical characteristics from caregivers at-large. Vol. Fourth. thus. 2006). particularly concerning persons with dementia.. Bass et al.. 2003. First.. strategies to address behavioral symptoms (Advancing Caregiver Training. in press) and physician approach. disease education (Savvy Caregiver.34.org/ by guest on October 22. as Mrs. 2014). Also. intervention costs. her father.oxfordjournals. Hodgson. Skills2Care®. Mittelman & Bartels. 2010. Smith & Bell. 2006) to address dementia patients’ comorbidities and caregiver burden. most studies do not evaluate outcomes of relevance to stakeholders. Partners in Care. would benefit Mrs. there is limited evidence concerning intervention benefits for demographic subgroups (men.68 depending upon measures and caregiver outcomes.The Gerontologist. Dennis. Gitlin and Hodgson (in press) found pooled effect sizes (d) ranging from 0. 2008). Smith. 2015. Gitlin et  al.. 2014). her need for care management (Maximizing Independence at Home. upset. study samples are not well characterized. These include. . minority populations. & Lummus.. help at home. a translational phase is necessary to modify complex protocols and interventionist training to derive a better fit with service environments and identify environmental supports and barriers to implementation. Service providers are unable to quantify needed resources for implementation and understand financial implications or possible cost savings. Smith’s physician to discern which programs to prescribe. and counseling and support (Belle et al.. generalizability of interventions may be questionable (Pruchno et  al. it is difficult for clinicians such as Mr.. for the most part.. & Lyketsos. cognitive and functional abilities. & Choi. for what outcomes. and collaborative primary care (Callahan et  al. As interventions are not purposively linked to disease stage or etiology nor classified in a meaningful way. Hodgson. 2014. Graney. in turn. 2005). activities to effectively engage Mr. and physician do not have knowledge of or access to these proven programs and approaches. proven programs exist that could improve Mr. 2009). Hodgson. Smith’s challenges include. self-efficacy. Mittelman. Clay. Smith. self-care.

in collaboration with AoA. 00 Translational Activities Only a few reports of translational activities are published to date. we conducted searches in major databases (CINAHL. Skills2Care®. Funding limitations has and will continue to significantly limit translational activity. In all cases. Unclear is why some caregiver interventions are translated and others not as most were tested in randomized trials resulting in positive outcomes. 2008). but it is unclear why. translational research. and (e) change in interventionist training. Burns. Although efforts are in progress. University of Connecticut). the Rosalynn Carter Institute through Johnson & Johnson funding (2007–2009) supported nine small translational projects involving four interventions: REACH I-Skills2Care®. Graney. (b) streamlining and modifying treatment manuals and training procedures. 2014 (PA-14-159). 2. 114 sites. and the Benjamin Rose Care Consultation program.. 2011). Alzheimer’s disease. This number is disconcerting yet consistent with other health fields in which an estimated 14% of evidence becomes integrated into practice (Institute of Medicine. Dr. renewed March. Savvy Caregiver-CA. Page 4 of 17 . (d) elimination of treatment elements (group support. Unclear is whether funding for translational efforts will endure. Google Scholar. Translation also appears to be characterized by eight actions as shown in Table  2: (a) identifying and involving key stakeholders to guide program integration in a site. Under this initiative. we are aware of one recent grant award for translation of the COPE intervention (Gitlin et  al. the decision-making processes for deriving adaptations are not articulated. The National Institute on Aging. As Table  1 suggests. Although not specific to dementia caregiving. ME). ranging from 34 in REACH II (NC) to 1. Fortinsky. PsychINFO.567 caregivers participated in translational efforts. REACH II-GA. Although modifications are notated. Savvy Caregiver-ME). (c) change in delivery mode (from face-to-face to telephone).S. A  quality improvement framework may be more appropriate in which adaptations to an intervention are continuously made in response to environmental demands and systematically documented and evaluated. Savvy Caregiver-CA. 2012). (c) evaluating readiness and preparing sites for implementation. Department of Veterans Affairs funded translation of one intervention to our knowledge. 2015 Vol. Summarized in Table  1. and better behavioral symptom management (NYUCI-MN. Demographic data available for five grants indicate most were women (59% for NYUCI-MN to 88% for REACH II-NC) and non-Hispanic White (50% for REACH II-NC to 98% for NYUCI-MN). Georgia. ME). REACH II and its variants (REACH OUT. Of 16 published translational studies. intervention. men and all race and ethnic minorities were underrepresented. initiated a program announcement (Translational Research to Help Older Adults Maintain their Health and Independence in the Community) in February. translation. RDAD. Reported outcomes included increased caregiver knowledge and understanding of memory problems (Coping with Caregiving-AZ. (d) identifying immutable and mutable treatment elements to improve intervention efficiency and dosing. RDAD-OH.210 in Savvy Caregiver (CA). replication. translation of National Institutes of Health (NIH) REACH or other dementia caregiver interventions was noted as areas of interest. RE-AIM) and their combination. only 6 of 200+ proven interventions (<3%) have been submitted to a translational process resulting in publication. REACH II. involving 15 states. The AoA 2013 report (Gould et  al. NYUCI. and STAR-C). 2013) summarizes outcomes of eight evidence-based funded grants. five key changes to delivery characteristics of the original intervention are mentioned: (a) change to session number and/or duration. No. We identified 16 publications using key words (dementia. O’Keeffe. New York University Caregiver Intervention (NYUCI) (MN).. three describe works-in-progress and 13 report outcomes. Hughes. It is not possible to discern funded translational efforts specific to dementia caregiving through this mechanism. This serves as an important lesson for intervention development. As to design. Skills2Care®-NJ). REACH II-NC. Reducing Disability in Alzheimer’s Disease (RDAD-OH). & Wiener. Savvy Caregiver Program. 2010a) for publicly funded home care clients and families (PI. and 127 family caregivers (Nichols. Resources for Enhancing Alzheimer’s Caregiver Health II (REACH II. REACH II-GA. studies report translations of six programs (REACH II. The U.The Gerontologist. 00.oxfordjournals. 2013). 355 trained staff. Gould. and not the other way around. NC). Scopus) to identify publications that purposively described translational efforts of proven dementia caregiver interventions. (e) evaluating uptake or Downloaded from http://gerontologist. technology applications). attention to context and involvement of stakeholders early on in intervention development may minimize future translational challenges. Savvy Caregiver-CA. Finally. 2016 randomized trials and reported in peer-reviewed publications. and Skills2Care® (NJ. Using a rapid review process (Harker & Kleijnen. carer. modifications are designed to simplify complex interventions to fit the delivery environment. & Zuber. Savvy Caregiver (California. translational efforts used pre-post designs. decreased caregiver stress and depression (NYUCI-MN.org/ by guest on October 22. Martindale-Adams. NYUCI in multiple sites. Embase. REACH adapted for Hospital). to date. PubMed. eight grants were funded in eight states involving translation of six interventions: Coping with Caregiving (AZ). (b) change in session location (from home to clinic or combination). 2011 (PA-11-123). caregiver.

positive aspects of (Continued) available support. and Mixed-methods. social home visits and 3 telephone calls sion.org/ by guest on October 22. pre- “as needed” consultant Sustainability into usual service delivery.oxfordjournals.R. but no Improvements in burden. mid- Study design course assessment: RE-AIM translation Theory of regions): NC (three translation program NC-REACH II Site of Name of Gwyther.A. embedded in NC NC-REACH II addressed 272 enrolled with 236 (87%) In progress Effectiveness In progress Reach (number of caregivers) sessions from 12 to 4 visits content and delivery of program • More flexibility with timing and length of time • Reduced number of sessions weekly coaching sessions to use of REACH II • Shifted the mandatory guides and tools • Streamlined intervention intervention Modifications to original Downloaded from http://gerontologist. health. mood.(2009) indicated Not AL: AAAs Burgio et al. wandering) behaviors (supervi- lems. Altpeter. 2016 REACH OUT implementation process setting Derence (2013) Fidelity evaluated and eight-steps reviewing community Patterson. 00 . 2015. 00. REACH II Citation Table 1.E.  Summary of Published Translational Studies of Dementia Caregiver Interventions Page 5 of 17 The Gerontologist. No. number of home visits and manager recorded the Fidelity evaluated: case post (4 months) Single group design. during visit were “checked off” if used Treatment components phone calls. sustainability data Seeks integration Caregiver: • Shortened number of completing at least three of four stration funding with AOA demon- respite program dementia-specific a comprehensive Project C. risk in behavior prob- PwD: Improvements frustration caregiving. depression.. 1. Kennedy. Vol.

org/ by guest on October 22. vs. service departments.data available Effectiveness Reach (number of caregivers) four of the in-home visits districts) Support Project (REACH-HK) across 18 Caregiver post (6 months) Single group design. pre- Rural Georgia Not and Coleman GA-REACH up interview Downloaded from http://gerontologist. 2016 Easom.Improvements in per. Citation Table 1. (Continued) data available caregiver depresintervention for telephone visits vs.in the original REACH II setting new hire process repeated with each Training certification calls. burden. with governmental through partnership concerted efforts future research and be achieved with behavioral problems sustainability could PwD: Abatement in Noted that ing risks bother.  Continued The Gerontologist. Alston. and confidence in sion. ception of positive (53%) caregivers completing Single group design. pre- • Eliminated support groups Dementia RE-AIM (11 NGOs Reaching out (2014) Hong Kong Modifications to original intervention Study design translation translation program Theory of Site of Name of Cheung et al. 00 Page 6 of 17 . caregivers’ homes counseling rooms of NGOs quent sessions conducted in • After first 2 sessions. to random support group Program manager listened interventionists’ interaction. supervision and tracking of Fidelity evaluated: close intervention behavioral problems PwD: Decrease in caregiving skills. and universities.oxfordjournals. health. No. 2015 Vol. burden. and caregiv- depression. two community (2013) No sustainability • Caregiver could substitute Improvements in post (6 months) (11 counties): indicated Caregiver: providers. 00. aspects of caregiving. subse- telephone system computer-integrated Eliminated specialized No sustainability 161 caregivers enrolled with 85 Fidelity not indicated Caregiver: 243 completed baseline interview Sustainability addressed with 201 (83%) completing follow.

and care risk score. indicated data available Improvement in completing the program Improvements in available for 105 (83%) additional Noted that ing and that the VA is discussing rollout at a national level sion on daily lives.5-hr telephone. Reyes- Citation Table 1. caregiver through monetary. No.org/ by guest on October 22. and • Nine 1-hr in-home visits printed in Spanish • Caregiver notebooks also • Change terminology in by nity setting Ortiz. Improvements in (44%) completing all treatment contacts Noted continued Caregiver: 164 enrolled caregivers with 72 behaviors reported problem REACH-VA trainimpact of depres- burden. followed original. Not indi- 15 States: REACH: Nichols et al. and ing hospitals. RE-AIM 24 VAMC (REACH-VA) uted to fidelity adherence. Fidelity not indicated grams across text Veterans Affairs facilities pre-post (6 months) cated in HBPC pro- Department of (2011) Single group design. setting includ- health care integrated Scott and Scott and White Stevens. 00 .  Continued Page 7 of 17 The Gerontologist. 00. Smith. recipient safety PwD: Patient organizational and burden. VAMCs requested Caregiver: 127 enrolled with follow-up data and burden caregiver depression No sustainability Caregivers: 494 families enrolled with 177 Sustainability addressed Effectiveness Reach (number of caregivers) Downloaded from http://gerontologist. member contrib FCP staff by a REACH II Training and oversight of components.substituting “dementia care specialists” for “counselors” Alzheimer’s Association (2014) White Health care system: FCP. and Singh Fidelity not indicated pre-post (6 month) • Modifications in delivery Single group design. 2015. groups • Did not provide support component • Did not provide technology • Abbreviated assessment • No homevisits • Technology not provided group support sessions. Vol. and McGhee (2012) AAA clinics. 2016 Lykens. REACH II in Texas Trickett. depression. frustration PwD: Fewer institutional support decreased problem behaviors regions (Continued) two more service FCP expanded into educational efforts. five 1-hr monthly telephone • Three 0. Moayad.oxfordjournals. Not REACH II Modifications to original intervention Study design translation Theory of commu- translation program North TX: Site of Name of Biswas. core treatment delivery schedule intervention materials and Fidelity evaluated: pre-post (6 months) Single group design.

the intervention on reaction to which this transbehaviors lational study was based but payment PwD: Decrease model not specified in frequency of depressive problems. ability to engage PwD in activities. No telephone option for one by project coordinator therapist Documentation reviewed receipt.g. of whom 117 (51%) longer period of time • Fewer consultations with in program • No limit to amount of time sultations received • No limit to number of con. and Not indi- MN: 4 Fidelity not indicated intervention: 6-month to cated in Association Lack of structured Not indi- regions): Services Program Peterson (2014) • Diagnosis does not have to session and PI. Skills2Care® Citation Table 1. NYUCI care Fidelity evaluated: provided surveys available for 20 practice home 2 days Sustainability data available No sustainability sustainability a mechanism for tion and serves as dementia educa- to patient with of care provided Medicare B as part reimbursed through sessions were Skills2Care® addressed (Continued) Caregiver: Noted that the state Improvements in has committed to social support. disruptive behaviors Caregivers: Improvements in caregiver competence and confidence Caregiver: Improvements in caregiver knowledge and skills (e. 00. pre- translation Theory of states: private translation program Mid-Atlantic RE-AIM Site of Name of Gitlin et al. No. more confidence managing behaviors.oxfordjournals.  Continued The Gerontologist. Evaluated training with PI and research absorbed by occupational Name changed from Klug. continue providing tangible assistance. caregiver through examination of interventionist. and enactment.750 caregivers and 951 persons four sessions least one follow-up assessment number of sessions and had at had completed the minimum • Reduced from six sessions to 228 enrolled.reported empowerment be confirmed Downloaded from http://gerontologist. 2015 Vol. and ND Dementia Care ND (eight 3. therapist delivery. guiding scripts. 00 Page 8 of 17 .org/ by guest on October 22. (2010) Skills2Care® 2. understanding memory loss. and taking better care of self) sessions but post-treatment 41 completed one or more collapsed from 2 weeks to Effectiveness Reach (number of caregivers) Training of interventionists intervention Modifications to original post (4 months) Study design Single group design.environmental skill-building Optional PT visit to train in proper body techniques manual of procedures. treatment documentation forms. 2016 the Minnesota Pre-post (4. 8.. and 42-month time frame text Alzheimer’s MN Family Mittelman and Bartels (2014) text selected by (FMC) AAAs Aging and the Board on Fidelity not indicated 12 months) cated in project sites Memory Care completing survey of self- with dementia with 101 caregivers 1. Halaas.

2-. of whom Caregiver: Hepburn. Vol. letting thing slide.Savvy Caregiver Program (2005) Not indi- Association Alzheimer’s urban) (rural and text communities cated in CO: 25 than 7 to 6 weeks. and positive aspects of caregiving.  Continued Page 9 of 17 The Gerontologist. • Shortened length of training -54 rural and 42 urban caregivers 676 (88%) agreed to post-test Downloaded from http://gerontologist.org/ by guest on October 22. Savvy Caregiver Paone (2014) Citation Table 1. Aboueissa. urban caregivers. program handling changes in PwD behavior. No. prepost. directing. 2015. and increasing knowledge of Alzheimer’s disease components of FMC ing. personal gain. depression (for those with baseline elevated scores) Caregiversimprovement in rural caregivers’ depression scores. assessment. MSCP Program 4. process evaluation (4–8 months) RE-AIM MN : 14 University Sustainability (Continued) data available No sustainability Caregiver Program on Aging Family Centers/Agencies Disability Resource into two Aging and MSCP is integrated addressed Effectiveness Reach (number of caregivers) New York Modifications to original intervention Study design translation translation program Theory of Site of Name of Samia. (2014) Single group design.oxfordjournals. whereas urban caregivers’ scores did not improve • Shortened from weekly 2-hr 770 accessed the program. AAAs) Fidelity not indicated pre-post (6 months) to 1-. 00. management of the situation. keeping the PwD busy. and reporting tools were program sites. mixed-methods sites included RE-AIM ME: project Halloran. train- Mixed-methods. management of more reasonable expectations. 137 caregivers completed core Protocol. or 3-week sessions Rural vs. and Minnesota Memory Care in Fidelity not indicated based setting Intervention called Family interventions with 105 modified community- Caregiver Caregivers: Lack of on-going Reported that the funding source and intervention was grant expiration helpful in discussing contributed to lack problems related of sustainability of to caring for PwD. 2016 Smith and Bell sessions more group psych-education hospitals and Fidelity evaluated survey completing post-intervention Improvements in competence. 00 .

g. C. content. (2012)a STAR-C Teri et al. AAA = Area Agencies on Aging. and Maintenance. assessments with clear. (2012)a (2014) Menne et al. MSCP = Maine Savvy Caregiver Project.E = Caregiver Alternatives to Running on Empty. NGO = Non-government organization... same including original RDAD program adhered to original and intervention was monitored noted that fidelity OH: AAA STAR-Community OR: RDAD text Association Disease-OH Fidelity evaluated: components post (3 months) services and No changes made to core Single group design.. 2012 publication) 405 (at time of Teri et al. 00 Page 10 of 17 .org/ by guest on October 22. Implementation. 2015 Vol. RDAD = Reducing Disability in Alzheimer’s Disease.R.translation program text (STAR-C) Consultants home-based modified (e. RDAD Citation Table 1. HBPC = Home-Based Primary Care. VAMC = Veterans Affairs Medical Center.g. AoA = Administration on Aging. More sessions associated with decrease in unmet needs after intervention 326 participants enrolled with 219 (67%) completing pre-post Effectiveness Reach (number of caregivers) cated in Not indi- not blinded) sive details for program cated in adoption modified (e. No. REACH = Resources for Enhancing Alzheimer’s Caregiver Health. 2012 surveys Sustainability data available No sustainability addressed study for the outcome Outcome data not Noted as an imporyet reported. tant area of inquiry study for the outcome Outcome data not Noted as an imporyet reported. Teri et al. Adoption. RE-AIM = Reach. PwD = person with dementia. assessments not publication) blinded) taped sessions of STAR-C reviewed by University of text Washington trainers Assessment procedures were Fidelity evaluated: audio- 70 (at time of Teri et al. and delivery schedule. 00. comprehen- Not indi- home-based Fidelity evaluated: manuals Assessment procedures were handouts tools.oxfordjournals.  Continued The Gerontologist. Efficacy/Effectiveness. PI = principal investigator. 5. a This publication presents two translational studies that are currently under way with no outcome data reported at time of publication. tant area of inquiry Caregiver: Improvement in caregiver strain.. FCP = Family Caregiver Program.A. REACH OUT = Resources for Enhancing Alzheimer’s Caregiver Health Offering Useful Treatments. 2016 Notes. pre- cated in intervention Modifications to original Not indi- Study design Alzheimer’s translation Theory of in Alzheimer’s Reducing Disability OH: Site of Name of Downloaded from http://gerontologist. readings.

PA.. adoption.The Gerontologist. and (h) exploring sustainable payment models. Although translational efforts are small in scope. For “implementation. As perceptions of an innovation predict rate of diffusion.461 caregivers were enrolled with 876 (60%) completing post-tests. training. (g) evaluating participant benefits. Downloaded from http://gerontologist. Vogt.g. Yet. integrate it into practice or service site routines • Identify immutable and mutable aspects of the intervention guided by theory and empirical analyses (e.. When translating interventions. (Table 2) Future translational efforts should explicitly address each of these tasks so that interventions can be more uniformly translated. fidelity monitoring plans are indicated by nine (56. mediation. Of 13 studies reporting outcomes. quality control needs. CO. achieving a fixed dose may be beyond the ability of interventionists. implementation. It is unclear whether attrition is from programs or data collection efforts.org/ by guest on October 22. agencies. little evidence is provided such that conclusions and lessons learned cannot be gleaned. 00. 1. families) Intervention refinements Manual refinements Establish training program Site preparedness Examine payment mechanisms Establish an approach to fidelity Evaluate translational activities adoption by interventionists.  Key Domains and Activities of a Translational Phase for Caregiver Interventions Key activities Identify stakeholders and partners Involve key stakeholders including potential interventionists. AL. Of these 16 studies. clients.” or consistency of program delivery. 00 Page 11 of 17 Table 2. three Mid-Atlantic states: NJ. (f) evaluating fidelity. all indicated participant benefits commensurate with original trials. dose response) • Streamline dose and intensity based on contextual requirements and available evidence • Adapt and streamline treatment manual for consumption by practice site and interventionists • Standardize all aspects of the intervention and manual for scaling up • Streamline training time to fit service context • Identify criteria for being an interventionist • Identify approach to certifying training • Identify future training strategies for scaling up • Evaluate readiness of site to implement an evidence-based program • Identify staffing. and families. MN. supervision. Of six published translational activities involving REACH II. and OR). This is a critical distinction. and associated site costs • Identify costs and costs savings for intervention delivery • Identify and evaluate reimbursement mechanisms and other payment approaches • Develop a fidelity plan commensurate with resources and context of service setting • Integrate plan within site routines if possible involving supervisory and monitoring structures in place • Use theoretical or conceptual models to understand translational processes and outcomes • Evaluate uptake by interventionists and adoption at site • Evaluate outcomes for end users (participants. GA. attrition from data collection presents a methodological challenge for documenting translational activity. and families. a broad public health model to appraise the impact of moving evidence to practice (Glasgow. As to “adoption” of interventions by interventionists. this is the good news. administrators. or program impact. market it. effectiveness. Comparisons across translational efforts could then be derived from which to advance more nuanced understandings of which interventions work and in what contexts. agencies. 2015. maintenance).3%) studies. If attrition is from programs. this would pose a significant barrier (Berwick. 2014). For example. As to “reach” or whether the right population is engaged. Outcomes Outcomes of published translational activities can be evaluated using RE-AIM criteria (reach. DE.oxfordjournals. 1999). One indicator may be attrition. No. although adherence rates are not necessarily reported. Fidelity is an important consideration to ensure intervention delivery is consistent with the original tested program. states (NC. 15 states with VAs. Vol. then the issue of perceived relevance is a concern. it is unclear how much flexibility can be tolerated to address implementation barriers without altering active ingredients of original interventions (Washington et al. 1 study occurred in Hong Kong and 15 in specific regions in 28 (56%) U. Alternately. ND. moderation. there is a lack of diversity in caregivers represented in efforts to date. of 13 publications reporting data. 4. Most participants of translational efforts are Caucasian and women. 2 = TX. some degree of flexibility is warranted to ensure optimal delivery. & Boles.809 caregivers were enrolled and 2. Effectiveness. and end users (family caregivers) to identify best way to name and frame program. ME. OH. is the primary focus of publications.179 (45%) provided posttest data. 2016 Domain . 2003).S.

org/ by guest on October 22. The lack of use of knowledge transfer frameworks significantly inhibits a full understanding of facilitators and barriers to program implementation (Grimshaw et al. Although RE-AIM has high utility. could be employed to guide measurement and obtain a better understanding of contextual supports and barriers to implementation. for which there are many. Improve clinical relevance of evidence   • Evaluate cost and cost benefits of interventions   • Employ new trial designs such as embedded. hybrid designs that combine efficacy. Policy makers are critical stakeholders who need to be engaged to change payment mechanisms that reflect family needs and scientific evidence. or organizational level (REACH-FCP. CFIR (Consolidated Framework for Implementation Research. Of 16 studies. Other conceptual models. Davies. Savvy Caregiver Program-MSCP).. it does not address the myriad of translational concerns. Normalization Process Theory (May et al.5%) studies. 2016 1. 2008). The methodology used to identify immutable intervention components is not clearly described in reports. effectiveness with implementation testing phases to shorten translational phase   • Use mixed methodologies to simultaneously examine intervention effects. Walker. PRISM (Practical.. Dissemination and policy considerations   • Coordinate with health organizations and the aging network to disseminate proven caregiver interventions   • Coordinate with professional organizations to identify core competencies for using dementia caregiver interventions and their integration within professional training   • Develop a meaningful classification system and central registry for proven caregiver interventions for use by organizations and agencies   • Develop bundled or reimbursement payment mechanisms for providers to use proven caregiver interventions .5%) report using a conceptual model to inform implementation. quality of care. Damschroder et  al. state (NYUCI-FMC). or identify interventions most likely to improve targeted outcomes   • Use mediation to evaluate intervention treatment components   • Use moderation analyses to identify who benefits for what outcomes and from which to derive tailoring strategies 4. PRECEDE-PROCEED Model (Green & Kreuter. adoption. Pinpointing “active ingredients” or what makes an intervention work is challenging although integral to achieving effective translation and maintaining fidelity. and Grimshaw (2010) revealed that only 6% of studies they reviewed used theory to inform design and/or implementation of knowledge transfer interventions. lack of theory-informed translational activity is not uncommon. No. 2005).. only 6 (37.. Skills2Care®). Downloaded from http://gerontologist.. Regardless of these small incremental positive results overall. Funding allocation   • Allocate more funds for translating existing proven programs   • Expand research to develop and test caregiver interventions that target unaddressed needs along disease trajectory 3. Smith does not live in a state with translational activities. 2009). identify new intervention targets. Conceptual clarity   • Standardize activities that compose a translational phase   • Develop agreed-upon criteria for reporting translational activity   • Use different theoretical frameworks for understanding translational activities and evaluating outcomes   • Develop standard approach to manualizing treatment manuals   • Evaluate cost. and implementation facilitators and barriers   • Better align epidemiological findings from national representative data sets with new intervention development for dementia caregivers   • Examine dose response and role of treatment components   • Explore use of simulation models to examine cost savings. Existing care systems are not currently designed to fund or reimburse evidence-based practices. 2008).oxfordjournals.  Recommendations for Advancing Translation of Dementia Caregiver Interventions Another aspect of implementation concerns identifying core ingredients of interventions that cannot be altered (Gearing et al. 2012). 2015 Vol.1%) had a sustainability mechanism in place at the federal (REACH-VA. Finally. pragmatic. Unfortunately. Kitson et  al. Feldstein & Glasgow. and other key outcomes   • Evaluate needs to prepare workforce and standardize curriculum for using evidence-based dementia caregiver interventions   • Develop agreed-upon criteria for determining which interventions to move forward with translation 2. 00. Moreover. 2009). Further. as there are no common metrics on what should be evaluated at a translational phase. Six (46. utilizing theoretical frameworks could help close this gap. 2005). 00 Page 12 of 17 Table 3. Robust Implementation and Sustainability Model. The possibility for sustainability was mentioned by 8 of 13 (61.The Gerontologist. or Theoretical Domains Framework (Michie et al.. exemplars include Promoting Action on Research Implementation in Health Services (PARiHS Model. Mrs. 2011). the “maintenance” of proven interventions is unknown. NC-REACH II. there do not appear to be any next steps or plans for wide-scale practice change. with RE-AIM being the singular approach employed.

As an interim study phase to move interventions from randomized trials to implementation. Smith will continue to not receive any benefits from proven interventions if our course of action remains the same. theory.S. which typifies U. For future interventions. Advancing a meaningful classification system of proven programs might help to inform agencies as to delivery characteristics. . In the United States. From all accounts. Smith. and potential benefits (Maslow.oxfordjournals. For existing interventions. 2012. and articulating theoretical frameworks for guiding translation would be important. Vol.org/ by guest on October 22. establishing criteria for identifying which interventions to move forward for translation. it represents an extremely small percentage (0. and reduce caregiver strain.0003%) of the 15+ million U. requires a strong and overdue societal response. .S. and identifying mechanisms by which interventions achieve benefits (mediational analyses). dementia family caregivers. and measurement considerations are not well delineated. activities. states have participated in translational studies with efforts limited to small regions. 5). there is a limited understanding of why some interventions over others are selected for translation. Etheredge. Riley. as illustrated by Mrs. this may involve conducting economic evaluations. 2013). practical trial or hybrid designs combining effectiveness and implementation queries could be pursued (Curran. determining which subgroups benefit the most (moderating analyses). the state-of-the-science of this phase is incipient. design. this should involve aligning intervention targets to those identified in population-based studies and involving stakeholders and end users (families and interventionists) early on in developmental phases. . 00. This first wave of translational Downloaded from http://gerontologist. Further. achieving consistency in reporting translational efforts. Further. A partnership between researchers and stakeholders to derive consensus as to what this phase includes is imperative. a host of dissemination and policy considerations are necessary. & Stetler. The translation of caregiver interventions can be considered a test phase for advancing proven programs. Despite the strength of extant interventions. 2015. Just over half of U. Smith and other families right now. to advance translation. Mittman.  caregiver experiences. the good news is that there are concrete programs to support Mrs. Finally. No. identifying common core competencies for delivery of proven programs and introducing these into health professional educational programs may offset the extensive training that programs typically require. Third is the need to improve clinical relevance and implementation potential of evidence. and what interventions work best in which settings. resources needed for implementation.566 caregivers (4. 00 Page 13 of 17 Recommendations Conclusions The 2013 World Alzheimer’s Report concluded that Caregiver multi-component interventions (comprising education. Although a wide range of interventions with strong evidentiary support could help dementia caregivers now. Of importance is revamping reimbursement policies or bundling programs into payment structures to incentivize providers to offer proven programs (Table 3). we are aware of no governments that have invested in this intervention to scale-up provision throughout the dementia care system. adopting flexible and rapid testing strategies of new interventions such as embedded.809 including Hong Kong) have participated in translation studies. Smith. Although this is a beginning and other translational efforts are underway. The case of Mrs. The overreliance of the health care system on the family’s therapeutic role in dementia care combined with negative consequences of this prolongated activity. processes for modifying interventions. Knowledge of translational challenges and decision making is critical to inform not only future translational efforts and widescale implementation. Second is the urgent need for funding. Bauer. Also. Mrs. Given that more than 200 interventions with strong evidence are available. but also the future design and testing of new interventions that are more suitable for delivery in practice settings. 2012). there is a need to balance resource allocation between discovery (developing/testing new interventions) and translating existing efficacious programs. Pyne. 4. costs. Despite the need for more and better interventions. One initial step to address the chasm between practice and existing knowledge involves greater attention to the science of translation. standardizing what activities occur in this phase.S. Consequently. Creating a central repository for proven programs from which to access training information and intervention details may also promote dissemination and use. 2016 Table  3 outlines four key recommendations for advancing translation of proven dementia caregiver interventions. illustrates the balance needed between investing in translation/implementation and discovery/intervention development/testing. Glasgow. training. as training or preparation of a workforce is critical. and hence coverage is minimal (p. there remain significant gaps in our knowledge of optimal interventions for diverse family caregivers. First is the need to obtain conceptual clarity and consensus as to the activities constituting translation. Nevertheless. funds for translation appear a worthy investment. & Abernethy. few have access to these programs. support and respite) maintain caregiver mood and morale.The Gerontologist.

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