The devastating impact and escalating. Translating Research Into Practice: Case Study Of A Community-Based Dementia Caregiver Intervention

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1 By Mary S. Mittelman and Stephen J. Bartels THE CARE SPAN Translating Research Into Practice: Case Study Of A Community-Based Dementia Caregiver Intervention doi: /hlthaff HEALTH AFFAIRS 33, NO. 4 (2014): Project HOPE The People-to-People Health Foundation, Inc. ABSTRACT One of the most devastating impacts of Alzheimer s disease and related dementias is the toll on caregivers. Evidence from randomized clinical trials has demonstrated the effectiveness of providing psychosocial interventions for caregivers to lessen their burden. However, the implementation of such interventions in community settings has proved challenging. This case study describes outcomes of the implementation of an evidence-based intervention in a multisite program in Minnesota. Consistent with the original randomized clinical trial of the intervention, assessments of this program showed decreased depression and distress among caregivers. Participating in a greater number of caregiver counseling sessions was also associated with longer time to nursing home placement for the person with dementia. Some of the challenges in the community setting included having caregivers complete the full six counseling sessions and acquiring complete outcome data. Given the challenges faced in the community setting, web-based training for providers may be a cost-effective way to realize the maximum benefits of the intervention for vulnerable adults with dementia and their families. Mary S. Mittelman (mary.mittelman@nyumc.org) is a research professor in the Department of Psychiatry, NYU School of Medicine, in New York City. Stephen J. Bartels is a professor in the Department of Psychiatry and in the Department of Community and Family Medicine at the Geisel School of Medicine at Dartmouth, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, and director of the Dartmouth Centers for Health and Aging, in Lebanon, New Hampshire. The devastating impact and escalating costs of dementia affect not only the person who has the illness, but also the family. There is an extensive body of evidence showing that caring for a family member with dementia has substantial negative physical and mental health consequences, in addition to the direct and lost opportunity costs borne by families. 1 Family caregivers are at increased risk of stress, depression, and physical illness. Sixty-one percent of caregivers rate their level of emotional stress as high, and about one-third report symptoms of depression. 1 Caregivers for people with dementia are more likely than other caregivers to have low self-rated health status and to report that their health has declined noticeably since they began caregiving. 1 These negative health assessments are corroborated by physical evidence: Family caregivers of people with dementia are more likely than other caregivers to have high levels of stress hormones, reduced immune function, slow wound healing, and new onset of hypertension and coronary heart disease. 1 The physical and emotional impact of caregiving on family members of people with dementia was estimated to result in $9.1 billion in increased health care costs in 2012 in the United States. Caring for a relative with dementia also poses an especially high risk of other negative outcomes: 56 percent of these caregivers report financial stress, and 53 percent April :4 Health Affairs 587

2 report family conflict. 1 Over the past two decades, randomized controlled trials have demonstrated that psychosocial interventions for caregivers are effective in producing clinically and socially meaningful improvements in their psychological well-being. 2 These interventions have been shown to substantially delay institution-based care by supporting the capacity of caregivers to continue to provide care within the home at low cost to third-party payers. 3 Yet despite extensive research demonstrating the benefits of caregiver support interventions, their implementation by communitybased providers is remarkably limited. Studying the processes and outcomes of implementing evidence-based practices in the community may make it possible to identify approaches that can overcome the research-topractice gap. The purpose of this article is to inform the practice of dementia care and related policies by describing the outcomes and challenges of a large-scale implementation of an evidence-based psychosocial intervention for caregivers of people with dementia. The New York University Caregiver Intervention The New York University Caregiver Intervention (NYUCI) was developed in the mid-1980s. The two overarching goals of the intervention are to improve the ability of the caregiver to withstand the difficulties of caregiving and to avoid or defer the need for institutionalization of the family member with dementia. The NYUCI consists of individual and family counseling, participation in a caregiver support group, and the ongoing telephone-based availability of counselors to caregivers and families (called ad hoc counseling) to help them deal with crises and changing symptoms during the course of the disease. Counselors also provide resource information and referrals. The NYUCI is delivered in two phases: a timelimited counseling phase and an ongoing maintenance and support phase. The intensive phase consists of two individual and four family counseling sessions within four months of enrollment. In this phase the primary focuses are on improving social support for the caregiver and helping the family understand the nature of dementia and the difficulties it presents. The second phase begins after the six counseling sessions. At that point, ongoing support continues to be available through ad hoc counseling, and participation in a support group is recommended so that caregivers can share lessons learned, caregiving skills, and coping strategies. Comprehensive assessments at intake and follow-up provide information about the changing physical and emotional health and social support needs of the primary caregiver and the problems associated with dementia care. All caregivers and participating family members are encouraged to telephone the counselor whenever they need additional advice and support. The NYUCI was first evaluated in a randomized clinical trial consisting of 406 spouse caregivers. 3 The study continued to receive funding for two decades, making it possible to evaluate both short- and long-term benefits. In the trial, study subjects completed a comprehensive assessment during an in-person interview with a trained social service provider. The subjects were then randomly assigned to the NYUCI or a control group whose members received usual care. In the intervention group, people with dementia resided in the community an average of 557 days longer, compared to those in the control group. 3 For the caregiver, the intervention was associated with a decrease in depressive symptoms and related symptoms of distress. 4 8 This result persisted through the nursing home placement and death of the person with dementia. 9,10 A simulation analysis has suggested that broad implementation of the NYUCI would result in substantial savings to state and federal governments through delayed institutionalization. 11 The effects of the NYUCI on spouse caregiver depression have been replicated in the Three Country Study, a randomized controlled trial conducted in the United States, Australia, and England. 12 The positive findings of the studies of the NYUCI led to international interest in making its benefits more widely available. To facilitate this effort, Mary Mittelman an author of this article and the developer of the intervention and coauthors published a book 13 describing the intervention. In addition, Mittelman and an experienced NYUCI clinician, Cynthia Epstein, have offered in-person training and supervision in the NYUCI to all prospective providers. Case Study: The Minnesota Family Memory Care Program Evidence of the effectiveness of the NYUCI led the Administration on Aging to fund translations of the NYUCI in six states Minnesota, Florida, Georgia, California, Wisconsin, and Utah through the Alzheimer s Disease Supportive Services Program. Minnesota was the earliest, and is the longest-running, implementation. The Minnesota project (called Minnesota Family Memory Care, or FMC) is administered 588 Health Affairs April :4

3 The NYUCI is deliveredintwo phases: a time-limited counseling phase and an ongoing maintenance and support phase. by the Minnesota Board on Aging and the Minnesota Department of Human Services. The FMC program began in 2008 at four sites; five new sites were added in each of the second and third years. The project was financed by three Alzheimer s Disease Supportive Services Program grants, with additional funding from the Minnesota Department of Human Services. To ensure its sustainability after the grant funds ended, the FMC program has been embedded within the statewide network of caregiver consultation services funded by the Older Americans Act of Implementation sites were selected by the Minnesota Board on Aging in cooperation with Area Agencies on Aging. The criteria for site participation included experience in delivering general caregiver services and the current provision of services for caregivers of people with Alzheimer s disease. Counselors were chosen from among the social service providers serving these caregivers. Marketing materials were developed jointly by the Minnesota Board on Aging and the sites. The service was marketed locally by the sites through their network of referral sources, educational activities of consultants, radio programs, newspaper articles, and newsletters. The original NYUCI model includes six counseling sessions. In 2010, after the NYUCI translation project in Minnesota had been in operation for several years, the Administration on Aging defined completion of intervention as participation in two-thirds or more of the program sessions. 14 Thus, in the NYUCI translations funded by the Alzheimer s Disease Supportive Services Program, participation in six sessions was the goal, but completion was defined as participation in a minimum of four sessions. Training And Clinical Supervision Of Providers Seventeen counselors were trained in the NYUCI and participated in the FMC program. Nine of them had a master s degree in social work or an allied profession: Four were licensed clinical social workers. The other eight counselors had bachelor s degrees in social work, psychology, or occupational therapy. Prior to receiving in-person training, the counselors participated in three discussion sessions of the book describing the NYUCI. 13 In the first phase of implementation, counselors at the original four FMC sites participated in a day and a half of in-person training provided by Mittelman and Epstein. The second cohort of counselors was initially trained by the previously trained Minnesota providers. Twelve months later, the counselors in the second and third cohorts received in-person training from Epstein. Regular biweekly group-based telephone supervision was provided by the NYUCI team for the first eighteen months of the FMC program. Subsequently, supervision was provided by a Minnesota-based clinician who participated in quarterly calls with the NYUCI team. Outcome Measures Consistent with the protocol of the research trial, 3 outcomes were to be assessed every four months for the first year after enrollment and every six months thereafter. Counselors were encouraged, whenever possible, to use the results of the assessments to provide additional advice and counseling to caregivers. The assessment measured the domains of outcomes for which the original study of the NYUCI 3 had published evidence of efficacy These included caregiver depression, measured with the Center for Epidemiological Studies Depression Scale, a twenty-item self-rating scale; 15 caregiver reaction to problem behavior of the person with dementia, measured with the Revised Memory and Behavior Problems Checklist, a twenty-fouritem self-report questionnaire that assesses the frequency of and reaction to behavioral problems; 16 caregiver self-rated health status, measured with an item from the Older Americans Resources and Services questionnaire; 17 and caregiver satisfaction with social support, measured with the Stokes social network questionnaire. 18 In addition, the severity of dementia as reported by the caregiver was measured using the Global Deterioration Scale. 19 Status tracking forms for each caregiver were filled out and updated by each counselor and submitted quarterly to the Minnesota Board on Aging. Information about the number of counseling sessions, dates of nursing home placement and death, and reasons for discontinuing the intervention was extracted from these forms and merged into the outcome database that was provided to the authors. April :4 Health Affairs 589

4 Exhibit 1 Study Results Participants In the period from March 1, 2008, through May 6, 2013, 228 caregivers were enrolled in the FMC program. The caregivers were either spouses or partners of a person with dementia. The mean age of the caregivers was 73.1 years (Exhibit 1). The majority of them were female and Caucasian, lived in a rural area, and had completed at least some college. The mean age of the people with dementia was 75.6 years (data not shown). Counseling Session Completion Data on the number of counseling sessions attended were available for 207 (90.8 percent) of the caregivers. Of these caregivers, 160 (77.3 percent) completed four or more sessions, and 103 (49.8 percent) completed all six sessions. A linear regression analysis found no relationship between caregiver characteristics and the number of sessions completed. Characteristics Of The 228 Caregivers Enrolled In The Minnesota Demonstration Project Of The New York University Caregiver Intervention, March 1, 2008 May 6, 2013 Characteristic Number Percent Mean caregiver age (years) a 73.1 b Caregiver sex Male Female Caregiver race or ethnicity Caucasian African American Geographic classification Rural Urban Caregiver education Completed at least some college Insurance Of caregiver c Medicaid Medicare Long-term care insurance Of person with dementia c Medicaid Medicare Long-term care insurance Year caregiver enrolled d SOURCE Authors analysis of data provided to Mary Mittelman by the Minnesota Board on Aging. a Standard deviation: 9.9 years. b Not applicable. c 103 respondents to questions about caregiver insurance; 102 respondents to questions about insurance for person with dementia. Despite the number of missing data values for insurance source, the information is included here because it helps identify who pays for care. d January 1 May 6, Follow-Up Assessment Completion At least one follow-up assessment was obtained for 123 of the caregivers (53.9 percent). Of those caregivers, 117 (95.1 percent) also had completed four or more counseling sessions. Followup assessments were obtained for ninety-nine caregivers (43.4 percent) at four months, eightynine (39.0 percent) at eight months, seventythree (32.0 percent) at twelve months, thirtyeight (16.7 percent) at eighteen months, and thirty (13.2 percent) at twenty-four months. The results of the intervention could be determined only for those caregivers who completed at least one follow-up assessment. Therefore, we evaluated differences between the 123 caregivers who completed at least one assessment and the 105 who did not. We also evaluated differences across the counselors of these caregivers. Using logistic regression analysis, we first examined one possible predictor at a time, and then we entered significant predictors into a multivariate logistic regression analysis simultaneously. The likelihood of completing at least one follow-up assessment was greater for Caucasian caregivers compared to African American caregivers; for rural compared to urban caregivers; and for caregivers of people with more severe dementia and a greater frequency of problem behaviors (Exhibit 2). For a fuller version of Exhibit 2, including the univariate analysis results, see online Appendix Exhibit A1. 20 The likelihood of conducting at least one follow-up assessment was greater for counselors who had at least a master s degree in social work or a related field, compared to those who had only a bachelor s degree (Exhibit 2). Counselors who were trained and had clinical supervision by the NYU expert team were more likely to complete an assessment than those who were initially trained by previously trained local counselors and supervised by a Minnesota-based clinician. In the multiple predictor model, training and supervision of providers by the NYU experts and the frequency of problem behaviors of the person with dementia were most strongly associated with the completion of follow-up assessments (Exhibit 2). Number Of Counseling Sessions And Nursing Home Placement During the period of the demonstration project in Minnesota, 41 caregivers (18 percent) placed their spouse or partner in a nursing home, and four of those caregivers ended their participation because of that placement. When we conducted a Cox proportional hazard analysis, in which we controlled for severity of dementia at enrollment, we found that the number of counseling sessions completed had a statistically significant effect on time 590 Health Affairs April :4

5 Exhibit 2 Counselor, Caregiver, And Dementia Characteristics Associated With Completion Of At Least One Follow-Up Assessment, Minnesota Demonstration Project Of The New York University (NYU) Caregiver Intervention Factor Coefficient p value Counselor Has master s degree Was trained by NYU team Was supervised by NYU team Caregiver and person with dementia Race (Caucasian versus African American) Severity of dementia at intake a Frequency of problem behaviors at intake b SOURCE Authors analysis of data provided to Mary Mittelman by the Minnesota Board on Aging. NOTES Themultivariatelogistic regression analysis used only the predictors that were significant in univariate analyses. One additional variable was explored in a univariate analysis: geographic location (urban versus rural; p ¼ 0:22). a According to the Global Deterioration Scale (see Note 19 in text), on which 4 is mild dementia and 7 is very severe dementia. b According to the Revised Memory and Behavior ProblemsChecklist(seeNote16intext). to placement, even in that small subsample. A Kaplan-Meier survival analysis estimated that the mean time to placement for the six caregivers completing four to six sessions was 436 days (standard error: 61.92), compared to days (standard error: 47.01) for the thirty-one caregivers completing one to three sessions. Outcomes At Intake And Follow-Up Change in outcome from intake to follow-up assessments at four, eight, and twelve months after intake was evaluated for caregivers who completed at least one follow-up. Because of a substantial drop-off in follow-up assessments over time and statistical power considerations, we conducted paired t tests to measure changes from intake to followup assessments instead of using multivariate repeated measures analysis. Representative results are shown in Exhibit 3. Full results are available Exhibit 3 Outcomes: Changes From Intake To Follow-Up Assessment For Caregivers Who Completed At Least One Follow-Up Assessment, Minnesota Demonstration Project Of The New York University (NYU) Caregiver Intervention Mean outcome, intake and follow-up at: 4 months 8 months 12 months Outcome Intake Follow-up Intake Follow-up Intake Follow-up Caregiver s satisfaction with support, and self-rated depression Social support in general a **** ** Tangible assistance a *** ** Emotional support a ** * Caregiver s symptoms of depression b ** ** Caregiver s reaction to the person with dementia s problem behaviors Depressive behaviors c *** *** Memory problems c *** **** Disruptive behaviors c ** *** **** Problem behaviors (total) c **** **** Frequency with which the person with dementia has problem behaviors Depressive problems c *** Memory problems c Disruptive behaviors c ** *** Problem behaviors (total) c Caregiver s health status Caregiver s self-rated physical health d SOURCE Authors analysis. a Stokessocialnetworkquestionnaire(seeNote18intext),onwhich1isverysatisfiedand6isvery dissatisfied. Thus, a decrease in score means an improvement. b Center for Epidemiological Studies Depression scale (see Note 15 in text). c Revised Memory and Behavior Problems Checklist (see Note 16 in text). d Older Americans Resources and Servicesquestionnaire(seeNote17intext),onwhich1isexcellentand4ispoor.*p < 0:10 **p < 0:05 ***p < 0:01 ****p < 0:001 April :4 Health Affairs 591

6 in Appendix Exhibit A2. 20 At four-month follow-up assessments, caregivers reported a significant decrease in the number of their symptoms of depression and in the severity of their reaction to disruptive behaviors of the people with dementia for whom they cared (Exhibit 3). At eight-month follow-up assessments, caregivers reported significantly greater general satisfaction with social support from family and friends, tangible assistance, and emotional support; a significant reduction in symptoms of depression; and reduced reactions to all three domains of problem behaviors (memory problems, disruptive behaviors, and depression), although there were no significant changes in the frequency of the behaviors themselves. At twelve-month follow-up assessments, caregivers reported significant improvements in satisfaction with general social support and tangible assistance and reduced reactions to problem behaviors. Discussion Among the participants completing at least one follow-up assessment, the findings replicated many of those of the original randomized clinical trial. 3 8 Within this group, participation was associated with a decrease in caregiver depression and in severity of caregiver reactions to all three domains of problem behaviors (memory, disruption, depression). In addition, caregivers reported an overall increase in satisfaction with social support and assistance. Our finding of a decrease in caregivers symptoms of depression and in the severity of their reported reactions to challenging behaviors replicates prior results from the original randomized trial. 4 6 These are important outcomes for family caregivers. They reduce the likelihood of caregiver stress and burnout and the associated risks of neglect, abuse, and premature nursing home placement for the person with dementia. Caregivers report that they experienced greater social support is another important outcome, because social support is known to reduce the feelings of isolation that are often experienced by family caregivers. Social support can also help facilitate constructive problem solving and increase family caregivers confidence in their ability to manage challenging caregiving situations. Moreover, our previous research has shown that by improving social support, the NYUCI reduces caregivers stress and depression and the risk of nursing home placement. 7 Finally, our observation of increased time to institutionalization among people with dementia whose caregivers completed the full six counseling sessions (although based on a small subsample) is consistent with the findings in our original study 3 and underscores the potential cost savings associated with this intervention. In addition to reduced costs associated with delayed nursing home placement for the person with dementia, reduced depression 9 and stress 6 on the part of the caregiver could also contribute to lower overall health care costs. Spouse caregivers, who are generally older adults, may be vulnerable to psychological, physical, and cognitive disorders that can be exacerbated by stress. Counseling and support for spouse caregivers that effectively decreases their stress and depressive symptoms could have a major impact on health services use and spending. 21 Challenges To Implementing The Model In Real-World Settings The implementation of the NYUCI in Minnesota was associated with improved outcomes in multiple key domains for caregivers of people with dementia that have critical clinical and public health implications. At the same time, the FMC program illustrates some of the challenges that are commonly experienced in translating an evidence-based intervention from research into practice. 22 Almost 25 percent of enrollees discontinued counseling before completing the minimum four counseling sessions, and 54.8 percent discontinued counseling before completing all six sessions. This contrasts with the completion rates in the initial randomized controlled trial of 98.3 percent. 3 Importantly, completion of at least four counseling sessions was associated with greater time to nursing home placement than completion of fewer sessions. Completion by more caregivers of all six sessions might have improved the positive impact of the intervention. There are a number of potential explanations for the lower rate of session completion in the FMC program compared to the original clinical trial. First, it is possible that the intervention is less likely to be fully implemented when provided outside of the context of a controlled research study. Second, it is possible that lower rates of completing counseling sessions in this program might be due to differences in the characteristics of the participating caregivers. The original intervention was delivered to urban caregivers who agreed to participate in a randomized research study. In contrast, the Minnesota intervention was delivered largely to rural caregivers who were recipients of social services. Third, the different priorities of research and service delivery may have complicated the implementation of the intervention. 22,23 For example, from the perspective of Mittelman, this program provided an opportunity to disseminate the 592 Health Affairs April :4

7 An indicator of success is the sustainability of the program: The state has made a commitment to continue to provide the NYUCI. NYUCI and improve outcomes for as many caregivers as possible. The program also made it possible for her to evaluate the effectiveness of the intervention when delivered by usual care providers, instead of by counselors in a research setting. In contrast, the community service providers were focusing on solving practical operational challenges, including how to staff, supervise, and finance a new service while continuing to provide usual services to other caregivers. As Donna Walberg, the Minnesota project director, put it, Embedding a complex intervention in rural and culturally diverse communities was challenging in a time of economic upheaval. Fourth, Mittelman and colleagues had published peer-reviewed articles 3 10 and a book about the intervention. 13 However, an implementation manual was not available until after the FMC program s second year. Finally, it is possible that greater fidelity to the original research protocol might have been achieved with additional training in the NYUCI and clinical supervision. In addition, more frequent feedback to the counselors about targeted intervention outcomes such as caregivers satisfaction with support, symptoms of depression, and severity of reactions to problem behaviors might have improved the quality and effectiveness of the implementation. 24 Successful implementation is most likely to occur with a sustainable model of ongoing training, supervision, practical outcome measures, implementation coaching, real-time feedback, and sufficient financing and program staffing Outcome Measurement In Real World Settings Despite the highly promising results that were obtained in this community-based implementation, caution in their interpretation is warranted. First, this evaluation used a pre-post outcome evaluation design without a comparison group. Second, the evaluation relied on outcome measures administered by the providers. Most importantly, the effects of the intervention could be analyzed only for the participants who completed outcome assessments. The inclusion of extensive research-based measures in the outcome assessment may have contributed to incomplete follow-up data. Slightly more than half of the participants (53.9 percent) had at least one follow-up assessment, and fewer than one-third of the participants had a one-year follow-up. Importantly, follow-up assessments were more likely among caregivers with family members who had more severe symptoms of dementia and more frequent problem behaviors at intake. This suggests that adherence to intervention protocols may have been greater in families with the most challenging caregiving situations. Project leaders attributed declining completion of outcome assessments over time to the burden of research-based measures on caregivers. The assessment was seen as being too lengthy; including measures not commonly used in clinical practice, such as the Revised Memory and Behavior Problems Checklist; and taking up some of the limited time that providers had to serve caregivers. The assessment was shortened at the request of the Administration on Aging in the second year of the FMC program, but completion rates did not increase. An even shorter battery of person- and family-centered outcome measures with a clear link to guiding clinical care might have been completed more routinely. 26 In addition, conducting a comprehensive assessment with a more interactive approach might provide an opportunity for the caregiver to reflect on desired outcomes and consider new strategies for addressing the many challenges associated with caring for a person with dementia. 23 Despite the multiple challenges encountered in this real world translation of the NYUCI intervention, outcome assessments showed a decrease in depression and distress among caregivers, and adherence to the original intervention protocol was associated with longer time to nursing home placement. An additional indicator of success is the sustainability of the program: The state has made a commitment to continue to provide the NYUCI. ACT on Alzheimer s, the Minnesota Alzheimer s Plan implementation team, has developed an economic model in an effort to build the case for sustainable funding of psychosocial interventions such as the NYUCI. 27 Social workers with master s degrees will be targeted to receive either in-person training or newly developed web- April :4 Health Affairs 593

8 based training in providing the NYUCI. Methods to ensure that counselors receive the ongoing expert and peer clinical supervision that is essential to maintaining the core elements of the intervention are currently being discussed. Conclusion This case study illustrates the many challenges associated with translating research on a multicomponent psychosocial intervention into practice in community settings. The positive outcomes observed for caregivers with follow-up assessments suggest that the core components of the intervention were sustained in the translation. Systematic coaching in the implementation process, buy-in from all stakeholders, the use of audit and feedback of the results of the assessments aimed at improving fidelity to the intervention, and the use of brief outcome measures that have clear value for clinicians in guiding care can increase the success of translation of research-based interventions into practice. The use of applied technology may improve the implementation and standardized delivery of evidence-based interventions along with outcome evaluations. 28 Internet technology can also help meet the growing need for a trained workforce to provide supportive services to caregivers of older adults with cognitive and other mental disorders. 29 To achieve these goals, we developed a web-based training and certification program for future providers of the NYUCI. Web-based training may not only be a cost-effective alternative to in-person training. It may also have other advantages, including being available whenever and wherever new staff members need to be trained. In addition, to reduce the barriers to participation in the NYUCI, we are developing a telehealth platform for linking providers and caregivers who cannot easily access in-person counseling. Telehealth-delivered interventions will be particularly advantageous in rural areas because they eliminate the need for the primary caregiver to leave home (and the person with dementia) to participate. This approach has the potential added advantage of facilitating the inclusion of dispersed family members in different locations. The projected future cost of dementia care has the potential to adversely affect the financial sustainability of regional systems of acute and long-term care. Greater availability of in-home caregiver support, complemented by web-based training of providers, is likely to increase the reach of effective evidence-based interventions and reduce the impact of this devastating illness on health care systems. In the short run, achieving this goal will require reforms in regulatory and licensure-related limitations on third-party reimbursement for inperson and home-based telehealth caregiver interventions. In the long run, capitated systems seeking to improve care quality and lower costs are likely to benefit from the broad implementation of caregiver interventions to support family members and people with dementia, who are among the most vulnerable of older adults. This project was supported in part by the Administration on Aging within the Administration for Community Living (Grant No. 90AE0336), the US Department of Health and Human Services, and the Minnesota Board on Aging. Additional support was provided by the National Institutes of Health (Grant Nos. R01 MH42216 and R01 AG14634) and the NYU Alzheimer s Disease Center (Grant No. P30 AG08051). Grantees undertaking projects under government sponsorship are encouraged to express their findings and conclusions freely. Points of view or opinions do not, therefore, necessarily represent official policy of the Administration on Aging or the Minnesota Board on Aging. The authors acknowledge the contributions of Donna Walberg and Nancy Lee of the Minnesota Board on Aging, who spearheaded the implementation of the NYU Caregiver Intervention in Minnesota; Cynthia Epstein of the NYU School of Medicine, who partnered with Mary Mittelman in providing in-person training and expert supervision for all the program sites; Katie Maslow of the Institute of Medicine for her advice; and JessicaE.HoytoftheDartmouth Centers for Health and Aging for editorial assistance. 594 Health Affairs April :4

9 NOTES 1 Thies W, Blieler L, Alzheimer s Association Alzheimer s disease facts and figures. Alzheimers Dement. 2013;9(2): Sörensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated metaanalysis. Gerontologist. 2002;42(3): Mittelman MS, Haley WE, Clay OJ, Roth DL. Improving caregiver wellbeing delays nursing home placement of patients with Alzheimer disease. Neurology. 2006;67(9): Mittelman MS, Ferris SH, Shulman E, Steinberg G, Ambinder A, Mackell JA, et al. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist. 1995;35(6): Mittelman MS, Roth DL, Coon DW, Haley WE. Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer s disease. Am J Psychiatry. 2004;161(5): Mittelman MS, Roth DL, Haley WE, Zarit SH. Effects of a caregiver intervention on negative caregiver appraisals of behavior problems in patients with Alzheimer s disease: results of a randomized trial. J Gerontol B Psychol Sci Soc Sci. 2004; 59(1):P Roth DL, Mittelman MS, Clay OJ, Madan A, Haley WE. Changes in social support as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer s disease. Psychol Aging. 2005;20(4): Mittelman MS, Roth DL, Clay OJ, Haley WE. Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. Am J Geriatr Psychiatry. 2007;15(9): Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer s disease during the transition to institutionalization? Results from the New York University caregiver intervention study. J Am Geriatr Soc. 2008; 56(3): Haley WE, Bergman EJ, Roth DL, McVie T, Gaugler JE, Mittelman MS. Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms. Gerontologist. 2008;48(6): Weimer DL, Sager MA. Early identification and treatment of Alzheimer s disease: social and fiscal outcomes. Alzheimers Dement. 2009;5(3): Mittelman MS, Brodaty H, Wallen AS, Burns A. A three-country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with Alzheimer disease: effects on caregiver depression. Am J Geriatr Psychiatry. 2008;16(11): Mittelman MS, Epstein C, Pierzchala A. Counseling the Alzheimer s caregiver: a resource for health care professionals. Chicago (IL): AMA Press; Administration for Community Living. Alzheimer s Disease Supportive Services Program (ADSSP) data collection terms and FAQs. Washington (DC): Administration on Aging; p Radloff LS. The CES-D scale: a selfreport depression scale for research in the general population. Appl Psychol Meas. 1977;1(3): Teri L, Truax P, Logsdon R, Uomoto J, Zarit S, Vitaliano PP. Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychol Aging. 1992;7(4): Fillenbaum G. Multidimensional functional assessment: the OARS methodology a manual. Durham (NC): Duke University, Center for the Study of Aging and Human Development; Stokes JP. Predicting satisfaction with social support from social network structure. Am J Commun Psychol. 1983;11(2): Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139(9): To access the Appendix, click on the Appendix link in the box to the right of the article online. 21 Unützer J, Patrick DL, Simon G, Grembowski D, Walker E, Rutter C, et al. Depressive symptoms and the cost of health services in HMO patients aged 65 years and older. A 4-year prospective study. JAMA. 1997;277(20): Grimshaw JM, Eccles MP, Lavis JN, Hill SJ, Squires JE. Knowledge translation of research findings. Implement Sci. 2012;7: Davies H, Powell A, Rushmer R. Healthcare professionals views on clinician engagement in quality improvement: a literature review [Internet]. London: Health Foundation; 2007 Apr [cited 2014 Mar 5]. Available from: 24 Jamtvedt G, Young JM, Kristoffersen DT, O Brien MA, Oxman AD. Audit and feedback: effects on professional practice and health care outcomes. Cochrane Database Syst Rev. 2006; (2):CD Glasgow RE, Chambers D. Developing robust, sustainable, implementation systems using rigorous, rapid and relevant science. Clin Transl Sci. 2012;5(1): Aarons GA. Mental health provider attitudes toward adoption of evidence-based practice: the Evidence- Based Practice Attitude Scale (EBPAS). Ment Health Serv Res. 2004;6(2): Long KH, Moriarty JP, Mittelman MS. 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