Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers A Way Forward (2021) / Chapter Skim
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5 Assessing the Current State of Evidence
5 Assessing the Current State of Evidence
Pages 95-146
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This chapter begins with a review of the evidence supporting the two types of dementia care interventions for which the Agency for Healthcare Research and Quality (AHRQ) systematic review found sufficient evidence to support conclusions about effectiveness: collaborative care models and a multicomponent intervention for family caregivers (REACH [Resources for Enhancing Alzheimer's Caregiver Health]
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However, the AHRQ systematic review found limited such evidence, finding sufficient evidence to draw conclusions about effectiveness for only the two types of interventions noted above -- collaborative care models and multicomponent interventions for family caregivers (REACH II and daptations) -- each found to be supported by low-strength evidence of bena efit on specific outcomes for persons living with dementia or care partners and caregivers (Butler et al., 2020)
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107) It is important to emphasize that the AHRQ systematic review was designed specifically to inform the question of which interventions, if any, are ready for broad dissemination and implementation, and the review
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The limitations described above make it challenging to answer the core question that motivated this study of which dementia care interventions, if any, are ready for broad dissemination and implementation. To provide the most complete view of the evidence available to inform decision making in real-world settings, the committee supplemented the AHRQ review findings by applying the GRADE EtD framework and considering supplemental evidence, as described below.
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FIGURE 5-1 Framework for the use of evidence to make recommendations regarding the broad implementation of dementia care interventions. SOURCE: Adapted from NASEM, 2020.
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These findings include primary outcomes from individual studies for which the AHRQ review found insufficient evidence to draw a conclusion (often because of inconsistencies in this outcome across studies) , primary outcomes not included in the AHRQ review,2 secondary outcomes mentioned in the AHRQ review, and results from implementation studies that did not meet the AHRQ inclusion criteria.
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Summary of AHRQ Findings on the Effectiveness of Collaborative Care Models As described in Box 5-2, the seven studies of collaborative care models included in the AHRQ systematic review's analytic set examined six different model interventions. The three outcomes for persons living with dementia for which the AHRQ review found sufficient evidence to draw conclusions were (1)
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* The Indiana University/Purdue University collaborative care model, while no longer in use, helped inform the design of an ongoing collaborative care intervention, the Aging Brain Care Medical Home (Callahan et al., 2011)
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The AHRQ review's analytic set for collaborative care models included one study that evaluated emergency room visits. This study assessed the Care Ecosystem model, and observed benefit for decreasing emergency room visits for persons living with dementia during 12 months of followup (Possin et al., 2019)
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. C Findings for care partners and caregivers The AHRQ review's analytic set for collaborative care models included studies evaluating five outcomes for care partners and caregivers: quality of life, strain, depression, self-efficacy, and quality measures (Butler et al., 2020)
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. Findings for related interventions Several interventions that share features with collaborative care models, including several identified in the AHRQ systematic review in categories other than collaborative care, have been implemented in various settings.
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Additional Evidence on Effectiveness Several collaborative care interventions for which no studies met the AHRQ review inclusion criteria were assessed in CMMI evaluations. The two interventions that had sufficient data enabling CMMI to perform a rigorous analysis were the Aging Brain Care Medical Home program and the University of California, Los Angeles (UCLA)
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Two of the collaborative care models for which effectiveness evidence is described above -- Central Union for the Welfare of the Aged in Helsinki and the Dementia Care Management program in Germany -- were implemented in contexts very different from that of the United States, so that data on such criteria as feasibility and cost would not be applicable. Equity Collaborative care models have been implemented in racially and ethnically diverse populations spanning various geographic areas.
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. The Indiana University/Purdue University collaborative care model was delivered in an urban Indianapolis health care system that serves lowincome individuals, as well as the Indianapolis Veterans Affairs Medical Center (Callahan et al., 2006)
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Feasibility Collaborative care models tend to leverage existing health care and community resources, a feature that may make implementing such models across diverse settings more feasible. The authors of the ACCESS intervention emphasize that the ability of the program to link patients and caregivers with existing community resources facilitates the adaptation of ACCESS to other settings (Vickrey et al., 2006)
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found that such models were effective interventions for adults with various psychiatric conditions. A narrative review of emerging collaborative care interventions for dementia also describes a general finding of feasibility and sustainability for the interventions across settings, as well as responsiveness to the needs of health care systems (Heintz et al., 2020)
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Total health care costs for the intervention and control groups demonstrated a great degree of variability and were highly skewed. Conclusion Regarding Collaborative Care Models As a whole, the evidence supporting collaborative care models is encouraging.
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. A Multicomponent Intervention for Family Caregivers: REACH II and Its Adaptations The AHRQ systematic review identified 22 unique studies of multi component interventions for care partners and caregivers, 7 of which were rated as having a low or medium risk of bias and were included in the analysis (Butler et al., 2020)
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. REACH II via videophone: Randomized controlled trial evaluating a con densed REACH II intervention delivered primarily by videoconference technol ogy in Miami, Florida (Czaja et al., 2013)
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. Summary of AHRQ Findings on the Effectiveness of REACH II The AHRQ systematic review found low-strength evidence that REACH II improved care partner/caregiver depression at 6 months ( utler B et al., 2020)
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With the exception of caregiver depression, the AHRQ review found insufficient evidence to support conclusions about these outcomes. The additional studies described in this section were not included in the AHRQ review analytic set, in many cases because they used an ineligible study design, such as a single pre–posttest.
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An analysis of the results of REACH II according to racial and ethnic groups observed that the intervention improved quality of life for white and Hispanic or Latino family caregivers, but for Black caregivers, quality of life improved only for those who were caring for a spouse (Belle et al., 2006)
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Of these, 82 percent said the services offered were helpful, and 93 percent were satisfied with the quality of those services. Moreover, all participating caregivers reported satisfaction with the information provided and the phone contacts from intervention staff.
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. REACH II and its adaptations have been administered by individuals from diverse professions, including nursing, social work, and counseling, in real-world care settings (Benjamin Rose Institute on Aging and FCA, 2020; Nichols et al., 2011)
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CONCLUSION: REACH II and its adaptations -- interventions that provide support for family care partners/caregivers through a combination of strategies that include problem solving, skills training, stress management, support groups, provision of infor mation and education, and role playing -- have demonstrated some effectiveness under clinical trial conditions and are already being implemented in a variety of community settings with promising results. These interventions are ready for the next stage of field testing to support their widespread adaptation to and adoption in a variety of settings where people seek dementia care.
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First, given the inherent challenges of studying this topic -- including the complexity of dementia care interventions, the diversity of populations affected, and the importance of contextual effects, as described in Chapter 3 -- the fact that these two interventions produced low-strength evidence of effectiveness is important. Second, there is a notable trend in benefits across multiple outcomes beyond those for which the AHRQ review was able to draw a conclusion, and the consistency of evidence of benefit across sources of evidence is encouraging.
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RECOMMENDATION 1: Implement and evaluate outcomes for collaborative care models in multiple and varied real-world settings under appropriate conditions for monitoring, quality improvement, and information sharing. To enhance the evidence base for decision making about the implementation of collaborative care models -- which use multi disciplinary teams to integrate medical and psychosocial approaches to the care of persons living with dementia -- agencies of the U.S.
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Department of Veterans Affairs, should support infrastructure that would facilitate the collaboration of providers of primary care, mental health and other specialty care, and long-term services and sup ports within the health care system and with local home-based community services and supports agencies in implementing collaborative care models to improve the well-being of persons living with dementia and their care partners and caregivers. RECOMMENDATION 2: Implement and evaluate outcomes for REACH II and its adaptions in multiple and varied real-world settings under appropriate conditions for monitoring, quality improvement, and information sharing.
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As discussed next, additional research on a full range of interventions should be undertaken to continue to innovate and develop better ways of meeting the urgent needs of persons living with dementia, care partners, and caregivers. IMPROVING AND EXPANDING THE EVIDENCE BASE FOR DEMENTIA CARE INTERVENTIONS: GAPS AND OPPORTUNITIES For the majority of dementia care interventions included in the AHRQ systematic review, the evidence was insufficient to draw conclusions regarding their effect on outcomes for persons living with dementia and/or their
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Approach to Assessing the State of the Evidence for Other Interventions and Identifying Gaps and Opportunities Consistent with the study charge, the committee's approach to assessing the state of the evidence for interventions other than collaborative care models and REACH II and adaptations relied heavily on the findings from the AHRQ systematic review. However, the committee also considered additional sources of evidence, including expert and stakeholder input and such resources as Best Practice Caregiving, a database resulting from a joint project of the Benjamin Rose Institute on Aging, the Family Caregiver Alliance, and the Gerontological Society of America.
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The committee also mapped the interventions in the AHRQ systematic review against the framework for dementia care interventions presented in Chapter 3. This mapping exercise made it possible to assess the balance among interventions targeting the individual, community, policy, and s ocietal levels, all of which are important to meeting the needs of persons living with dementia, care partners, and caregivers.
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The AHRQ systematic review and a recent Lancet Commission report ( ivingston et al., 2020) used different approaches to evaluate the L evidence, but both focused heavily on individual-level interventions, highlighting an evidence gap related to community-, policy-, and societal-level strategies.7 In addition to the collaborative care models described earlier in this chapter, other community-level interventions evaluated in the AHRQ systematic review included case management, implementation of care protocols (descriptions of procedures, processes, and tools for providing care in an organization or care delivery system)
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At the committee's public workshop in April 2020, Mary utler B of the Minnesota Evidence-based Practice Center indicated that those s tudies had been excluded because they were considered to be evalua tions of the effectiveness of care delivery settings rather than intervention studies.8 The AHRQ systematic review notes that some community services and supports approaches, such as referral services and awareness-raising outreach, may have been missed because of the challenges of designing effective search strategies for such interventions in the context of a review with such broad scope. Going forward, adopting a broader definition of what constitutes a dementia care intervention may ensure that resources are invested in evaluating community-, policy-, and societal-level interventions and that such evaluations are included in future efforts to take stock of the state of the evidence.
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Gaps and Opportunities for Interventions Targeting the Individual Level Although the evidence base for interventions targeting the individual level is larger as a whole relative to that for community-, policy-, and societal-level interventions, the AHRQ review determined that for all but collaborative care models and REACH II and its adaptations, the evidence was insufficient to draw conclusions regarding their effect on outcomes for persons living with dementia and/or their care partners and caregivers. The committee identified several gaps related to the quality and heterogeneity of the evidence for other individual-level interventions that need to be addressed to better support decision makers seeking guidance on which interventions are ready for broad dissemination and implementation.
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Late-stage care interventions evaluated in the AHRQ systematic review include decision aids and supportive interventions for decision making about feeding options, advance care planning, and palliative care (Butler et al., 2020)
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The AHRQ systematic review process identified three unique studies on respite care interventions (Lawton et al., 1989; Vandepitte et al., 2019; Zarit et al., 1998) , but none were included in the analytic set because of high risk of bias.
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. Social support interventions, including peer support groups, were identified by caregivers as beneficial in their personal experience and deserving of priority attention in future research.12,13 At the committee's April 2020 public workshop, Douglas Pace of the Alzheimer's Association discussed the results from 3,000 listening sessions with persons living with dementia and care partners/caregivers from across the organization's chapter network around the country, and noted that social support groups and the education they can provide were consistently identified as very important.14 However, the AHRQ systematic review found little evidence to support conclusions on the effectiveness of these interventions.
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CONCLUSION: While there have been important advances in knowledge regarding ways to better provide care, support, and ser vices for persons living with dementia and their care partners and caregivers, significant gaps remain in the evidence base for many interventions evaluated in the AHRQ systematic review, including interventions identified by persons living with dementia, care part ners, and caregivers as important to their health and well-being. To address these gaps, future research investments will need to ensure that studies are appropriately designed and conducted with meth odological rigor, and progress beyond pilot and efficacy tudies to s include the evaluation of interventions in real-world settings.
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of those individuals enrolled in studies, the dearth of data for specific demographic subpopulations further hinders drawing conclusions about the real-world effectiveness of dementia care interventions. Important subpopulations to consider in the context of research on dementia care interventions include major racial/ thnic groups, e LGBTQ populations, people with significant comorbidities (e.g., hearing loss or vision impairment)
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The AHRQ review acknowledges this challenge, especially in the absence of a field-accepted taxonomy for classifying dementia care interventions (Butler et al., 2020)
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. In discussions with the committee, persons living with dementia and care partners/caregivers indicated that exercise is an important part of staying active15 and that physical activity helps with mental health and coping.16 Exercise was the intervention category with the second largest body of studies meeting the criteria for inclusion in the AHRQ systematic review; the analytic set included 10 studies, 3 of which were cluster RCTs (Butler et al., 2020)
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At the committee's public workshop, one caregiver described how enjoyment of music was an important aspect of quality of life for her and her husband, for whom she is providing care.17 Another speaker noted that, despite the mixed research results, music has been helpful in practice for some people experiencing such feelings as loneliness and helplessness.18 The analytic set for the AHRQ systematic review included five RCTs of music interventions, but implementation and reported outcomes varied across studies, so that for most outcomes, assessment of strength of evi 17 Presented by Janet Michel at the Care Interventions for Individuals with Dementia and Their Caregivers workshop on April 15, 2020. 18 Presented by Douglas Pace of the Alzheimer's Association at the Care Interventions for Individuals with Dementia and Their Caregivers workshop on April 15, 2020.
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that are effective. The category of psychosocial therapies for care partner/caregiver wellbeing represented the largest body of included studies among the interventions evaluated in the AHRQ systematic review (29 studies)
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24 Of note, whether educational and skills-building interventions included in the Best Practice Caregiving database would have been classified as psychosocial or multicomponent interventions using the AHRQ systematic review taxonomy is often not clear because of the limitations of the intervention descriptions and the lack of consensus on taxonomies for d ementia care interventions.
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As a result of heterogeneity in study popula tions, intervention implementation, and measured outcomes, little is known regarding which interventions are likely to be effective for persons living with dementia, care partners, and caregivers experiencing different stages of disease progression and how they should optimally be implemented. CONCLUSION: Evidence is lacking with respect to the effective ness of dementia care interventions in diverse populations, such as specific racial/ethnic groups, LGBTQ populations, people with significant comorbidities or of low socioeconomic status, and those
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However, the AHRQ systematic review also brings to the forefront some addressable limitations in the existing research base, such as a lack of diversity in study popula tions, underpowered and limited-duration studies, heterogeneity of outcome measures that precludes aggregation of results, lack of reporting on contextual factors that facilitate or impede inter vention effectiveness, and research that is divorced from practical implementation needs. REFERENCES Alonso-Coello, P., H
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2013. Collaborative care man agement reduces disparities in dementia care quality for caregivers with less education.
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2017. Collaborative care for psychiatric disorders in older adults: A systematic review.
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2020. Emerging collaborative care models for dementia care in the primary care setting: A nar rative review.
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2015. A break-even analysis for dementia care collaboration: Partners in dementia care.
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2019. Variations in costs of a collaborative care model for dementia.
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2019. Effective ess of an in-home respite care program to support informal dementia caregivers: n A comparative study.
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