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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6 A Blueprint for Future Research
6 A Blueprint for Future Research
Pages 147-180
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From page 147... ...
. In this chapter, the committee lays out a blueprint for future research on dementia care interventions by outlining the methodological improvements needed across the research enterprise to strengthen the evidence base at multiple levels, including prioritizing inclusive research and incorporating throughout the study process the priorities of persons living with dementia and their care partners and caregivers.
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Ensure a Balanced Portfolio of Short- and Longer-Term Studies with Sufficient Sample Sizes Much of the dementia care research conducted to date has consisted of studies with small sample sizes and limited duration, making it challenging to detect significant effects. This limitation of the evidence base was highlighted in the AHRQ systematic review, in which the vast majority of
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From page 149... ...
Longitudinal studies in community populations that are representative of persons living with dementia, care partners, and caregivers -- as opposed to convenience samples often drawn from specialized clinics -- may shed light on the progressive nature of the disease and how care, support, and service needs evolve. It will be important to understand whether an intervention implemented over the long term can adapt effectively to the changing needs of persons living with dementia, care partners, and caregivers, including the settings in which care is delivered (e.g., individual home, residential care facility, nursing home)
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NIA might also consider providing a road map for researchers offering funding support for each stage of the NIH Stage Model, tailored to the unique challenges inherent in dementia care research. Particularly for longer-duration studies, methods need to be in place for addressing issues related to attrition and how best to retain study participants.
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Chapter 3 highlights this point, noting that outcomes related to quality of life and meaning are difficult to capture for persons living with dementia because of the cognitive impairments they experience, as well as the inherent goals of dementia care, services, and supports aimed at helping a person live well in the world. The AHRQ systematic review found that quality of life was rarely the outcome of primary interest in a study, and often not measured at all, despite its being a central goal of dementia care interventions (Butler et al., 2020)
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is warranted. Focus on Outcomes of Greatest Importance to Persons Living with Dementia and Their Care Partners and Caregivers In reviewing the quality of the existing evidence on dementia care interventions, one finds that most studies to date have not taken stakeholder perspectives, and the diversity of those perspectives, into account from the outset.
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Within the set of harmonized outcomes and measures for dementia care research, a person's well-being is central. As noted in Chapters 1 and 2, this was a recurring theme highlighted among a group of persons living with dementia, care partners, and caregivers who served as advisers to the committee.
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. Similarly, the AHRQ systematic review revealed a lack of outcomes related to harms to care partners and caregivers.
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The committee acknowledges the ongoing efforts of NIH and NIA to institute new funding mechanisms that prioritize implementation science and the NIH Stage Model and align with the need for qualitative and mixed-method approaches.2 To continue to advance work in this domain, it may be necessary to establish expert working groups to develop standards and guidance on when best to use qualitative and mixed-method designs for dementia care research. 2 One such example is the NIA IMPACT (IMbedded Pragmatic Alzheimer's disease and related dementias Clinical Trials)
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The data thus obtained can serve as benchmarks for interventionists or adopters of interventions in evaluating the populations they serve. TABLE 6-1 Overview of Randomized and Nonrandomized/Observational Study Designs at the Individual and Community Levels, with Selected Examples Nonrandomized Experiments and Randomized Experiments Observational Studies Individual Individually Randomized Trials Follow-Up Studies Level Randomized trials randomly Observational follow-up studies assign individuals to one or more compare the outcomes of individuals interventions, including a control, who happen to receive the which may be standard care or interventions of interest without the some other comparator.
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randomized controlled trials, these rather than individuals. Cluster designs are limited in their ability randomized trials are also used for to determine the causal relationship interventions that are likely to be between the intervention and learned by participants who will outcome measure.
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Commit to Comprehensive Study Reporting The AHRQ systematic review highlights a variety of shortcomings in reporting of study results that impeded analysis. These included the need to improve and better understand fidelity in implementation, lack of reporting about the effects of the context in which an intervention was implemented, and lack of reporting on null findings or negative results and methodological approaches that did not work (Butler et al., 2020)
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. The adoption of similar approaches for dementia care research is needed to improve fidelity in the field.
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Realist review methods are increasingly being used to understand how complex public health, policy, and health services interventions work, for whom, and in which contexts (Pawson et al., 2005) , and may be useful in elucidating these relationships for dementia care interventions.
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of an intervention might help address some of those questions. According to the AHRQ systematic review, dementia care research has been slow to incorporate key elements of r igorous intervention design.
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Strengthening the evidence base to advance the ultimate goal of improving well-being for all will require greater investments in increasing diversity across the entire research enterprise (e.g., researchers, study participants, and stakeholders) , along with accountability measures to assess progress.
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. In short, there remains a critical gap in the development and implementation of dementia care interventions tailored to and driven by the needs of persons living with dementia, care partners, and caregivers from underrepresented groups and low-resource areas, as well as persons living with dementia who do not have care partners or caregivers.
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To achieve true progress in dementia care research, NIH will need to assume greater administrative accountability for ensuring increased representation of racial and ethnic minorities in research studies. The NIH evitalization Act of 19937 amends the Public Health Service Act to R incorporate a mandate for the inclusion of minorities in all NIH clinical research; however, progress on carrying out this mandate remains slow (Oh et al., 2015)
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. As noted above, few interventions considered in the AHRQ systematic review were designed for such areas, which therefore represent a critical gap in the implementation of care interventions to meet the needs of persons living with dementia, care partners, and caregivers.
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ASSESSING REAL-WORLD EFFECTIVENESS In assessing the evidence base for dementia care interventions in the context of determining readiness for broad dissemination and implementation, the AHRQ systematic review was guided by the NIH Stage Model for Behavioral Interventions (Butler et al., 2020)
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As discussed earlier in this chapter, much of the focus on interventions in the field has been on those targeting individual persons living with dementia, care partners, and caregivers. The effectiveness of these individual-level interventions can be assessed using randomized trials and observational studies that emulate randomized trials.
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Expand the Focus on Community/Policy-Level Interventions Using a Broad Set of Research Methodologies Because much of the focus of dementia care research has been on interventions applied to individuals, the AHRQ systematic review includes a paucity of evidence for interventions applied to communities or to the entire system. Estimating the effectiveness of the latter interventions is difficult, especially when they are implemented in parallel with individual-level interventions, as it can be difficult to link many distal processes of care to desired outcomes (NQF, 2014)
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and R34 (grant planning program) approaches, or funding of replication studies.10 NIA could expand this approach, for example, by providing a road map for researchers offering funding support for each stage of the NIH Stage Model tailored to the unique challenges inherent in dementia care research and the many opportunities for future research identified in this chapter.
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, have been applied in research with persons living with dementia, care partners, and caregivers, including a rural and remote dementia care program (e.g., Morgan et al., 2014)
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This progress should be encouraged, along with additional methodological improvements needed across the research enterprise to strengthen the rigor and representativeness of the evidence base for dementia care interventions at multiple levels, as well as the evidence base on the effect of interventions under real-world conditions. The committee also emphasizes the significant impact the COVID-19 pandemic has had on quality of life for persons living with dementia and their care partners and caregivers, as well as the implications for research (e.g., challenges to study recruitment)
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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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Studying dementia care interventions is challenging and complex, and the body of evidence is complicated to interpret. Two types of interventions are supported by sufficient evidence to warrant implementation in real-world settings, along with evaluation to continue to expand the evidence base.
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2014. Multicomponent intervention on enhancing dementia caregiver well-being and reducing behavioral problems among Hong Kong Chinese: A translational study based on REACH II.
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2013. A videophone psychosocial intervention for dementia caregivers.
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2018. Under reporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions.
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2018. Personal ized goal attainment in dementia care: Measuring what persons with dementia and their caregivers want.
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2020. Embedded pragmatic trials in dementia care: Realizing the vision of the NIA IMPACT Collaboratory.
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2014. Raising the standard of applied dementia care research: Addressing the implementation error.
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2014. What is known about dementia care recipient violence and aggression against caregivers?
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