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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Care partners may or may not live with the person or be involved in the provision of hands-on assistance with daily activities as a caregiver. Some persons living with MCI or dementia prefer the term "care partner" as it acknowledges the reciprocal contributions of and the partnership between both individuals.
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To help address this long-standing and deeply urgent need to better support persons living with dementia and their care partners and caregivers, there is a corresponding urgent need for evidence to guide effective action. In this context, the National Institute on Aging (NIA)
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The AHRQ systematic review provides a thorough review of available RCT evidence on care interventions for persons living with dementia and their care partners and caregivers. The literature search conducted for the AHRQ review also included prospective studies with concurrent comparator arms and interrupted time series with at least three measures both pre- and postintervention, but no such studies met the review criteria, and therefore these studies did not contribute to the review analysis.
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The committee concluded that the evidence needed to inform decisions about policy and the implementation of specific interventions broadly -- including prioritization of the many interventions that could be helpful but require resources -- is limited. The AHRQ systematic review and this committee's analysis highlight limitations of the existing research base that can be addressed, such as a lack of diversity among study participants, underpowered and limited-duration studies, heterogeneity of outcome measures that precludes aggregation of results, lack of reporting on contextual factors that may facilitate or impede the effectiveness of interventions, and research that is divorced from practical implementation needs.
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Thus, it is currently impossible to determine through a high-level systematic review whether an intervention is ineffective, whether it is effective but only for some people or in certain settings, or whether only some of its elements are effective. Consistent with its charge, the committee relied heavily on the findings from the AHRQ systematic review.
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Recognizing the importance of changing this situation, the committee sought to identify opportunities to expand the evidence base for interventions deemed important by persons living with dementia, care partners, and caregivers. The committee also considered other expert and stakeholder input presented during a public workshop and such resources as the Best Practice Caregiving database, which aided in the identification of types of interventions already being implemented in real-world practice settings but for which the AHRQ systematic review found insufficient evidence of effectiveness.
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INTERVENTIONS READY FOR IMPLEMENTATION IN REAL-WORLD SETTINGS WITH MONITORING, EVALUATION, QUALITY IMPROVEMENT, AND INFORMATION SHARING Together, the two types of interventions identified by the AHRQ systematic review as supported by low-strength evidence of benefit -- ollaborative c care models and REACH II and associated adaptations -- incorporate many, although not all, of the core components of care, services, and supports listed in Box S-2. Collaborative Care Models Collaborative care models use multidisciplinary teams to integrate medical and psychosocial approaches to the care of persons living with d ementia.
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Aggregating results across collaborative care interventions to draw conclusions regarding particular outcomes, the AHRQ systematic review found sufficient evidence to support conclusions of low-strength evidence that collaborative care models are effective for three outcomes for persons living with dementia: (1) quality of life, (2)
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In addition to the outcomes for which the AHRQ systematic review found low-strength evidence of benefit, both the systematic review and original study authors identified evidence of b enefit for other outcomes in individual studies, including decreasing neuro psychiatric symptoms and nursing home placement for persons living with dementia, and reducing caregiver strain and depression. The evidence was not sufficient to warrant reaching conclusions on effectiveness for these outcomes, generally because of inconsistent findings across studies.
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Studies of adaptations of REACH II also found improvements in selfreported social support, self-reported caregiver health, caregiver reactions to challenging behaviors, positive aspects of caregiving, and safety of persons living with dementia. Although the AHRQ systematic review did not find sufficient evidence to support conclusions about these outcomes, the trends of benefit across many outcomes in these implementation and adaptation studies complement the AHRQ systematic review findings.
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Taken together, these considerations led the committee to conclude that the evidence is sufficient to justify implementation of these two types of interventions in a broad spectrum of community settings, with evaluation conducted to continue expanding the evidence base to inform future implementation. The committee believes that this approach to expanding the evidence base is likely to bring greater gains and better inform realworld implementation relative to focusing on additional large RCTs aimed at generating moderate- or high-strength evidence in a future systematic review before any further dissemination can be supported.
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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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• The Centers for Medicare & Medicaid Services should explore the value of REACH II and its adaptations offered as a benefit through Medicare Advantage programs and alternative pay ment models and for fee-for-service beneficiaries to build the infrastructure, train the workforce, and redesign the workflows that would facilitate the adoption, monitoring, and evaluation of these programs. • State Medicaid programs serving persons living with ementia d and dual-eligible beneficiaries should encourage participat ing health systems, systems that provide long-term services and supports, and managed care organizations to provide REACH II and its adaptations for care partners and care givers.
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THE STATE OF THE EVIDENCE FOR OTHER DEMENTIA CARE INTERVENTIONS: GAPS AND OPPORTUNITIES Beyond the two types of interventions discussed above that met the AHRQ systematic review's criteria for low-strength evidence of benefit, the review found insufficient evidence to support conclusions about benefit for all other interventions. Importantly, a finding of insufficient evidence does not necessarily mean that an intervention is ineffective, but rather reflects high uncertainty given the limitations of the evidence base and of the approach used in the AHRQ systematic review to synthesize the existing evidence and assess its strength to support conclusions on readiness for broad dissemination and implementation.
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A BLUEPRINT FOR FUTURE RESEARCH To strengthen the evidence base by addressing the limitations described above, the committee offers a blueprint for future research. This blueprint includes methodological improvements aimed at limitations frequently found in the current evidence base -- such as underpowered and limitedduration studies, and heterogeneity of outcome measures that precludes aggregation across studies -- as well as approaches that can supplement the quantitative measures in RCTs to advance understanding in the face of the complexity of dementia care interventions and the systems in which they operate.
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RECOMMENDATION 4: Prioritize inclusive research. When funding research on care interventions for persons living with dementia and their care partners and caregivers, the National Insti tutes of Health (NIH)
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The committee's recommendations provide a path forward for building a more robust and useful evidence base by employing cutting-edge methods that are rigorous, most informative for this domain, inclusive, and equitable, and can yield information critical for real-world implementation. These exciting approaches can be implemented throughout this field, including by early-career researchers and others who want to harness new approaches to make a difference in addressing this critical societal need and better supporting persons living with dementia and their care partners and caregivers in living as well as possible.
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