Throughout the United States and around the world, millions of people are living with dementia, with impacts on their own health and quality of life, on their families and other caregivers, and on society more broadly. The signs and symptoms of dementia can be a significant source of fear and distress for persons living with dementia, and many desire support in leading meaningful and rewarding lives, maintaining independence and agency, enjoying activities of interest, maintaining social relationships with others, and being connected to familiar environments and communities (Gitlin and Hodgson, 2018; Han et al., 2016). To live as well as possible, persons living with dementia need medical care, physical quality of life, social and emotional quality of life, and access to services and supports. The needs, values, preferences, and desires of different individuals vary and evolve over time. In its early stages, persons living with dementia may need support in such activities as planning, making decisions, attending medical appointments, and engaging in pleasurable community and social activities. As cognitive impairment progresses, persons living with dementia need more extensive care and support in such basic activities of daily living as eating and bathing and in oversight of medications and more complex medical care, as well as continued support in engaging in activities that bring pleasure. Finally, as with many progressive diseases, some persons living with dementia will enter a terminal phase in which complete supportive care is needed.
Because of the disease’s effects on the ability to perform daily activities, persons living with dementia co-manage its demands with or rely on the support of a wide range of care partners and caregivers, including spouses,
other family members, friends, and direct care workers in the home or in care settings, working individually or in combination. These care partners and caregivers may or may not reside with the person living with dementia, who may live alone, particularly during their condition’s early stages. And as the needs of the person with dementia evolve over time, so, too, does the intensity of co-management.
Those who provide care often experience positive aspects of caregiving, including a deeper appreciation for life, satisfaction with living according to one’s values and sense of duty, and strengthening of the relationship between the care partner or caregiver and the person living with dementia (NASEM, 2016; Roth et al., 2015). However, caregivers also face higher risks to their physical and mental health, family conflict, social isolation, and negative consequences for their finances and jobs. Neither unpaid nor paid caregivers—direct care workers such as home health aides or certified nursing assistants—receive adequate training and support for this challenging work (Burgdorf et al., 2019; NASEM, 2016). Alongside persons living with dementia, care partners and caregivers require their own services and supports to live well themselves.
Significant progress has been made in the care, services, and supports provided for persons living with dementia, care partners, and caregivers since the 1970s, when dementia was not widely recognized as the consequence of a disease; diagnosis and treatment received little attention in the health care system; and care for persons living with dementia was largely a private family matter or, as a last resort, provided by state welfare systems in asylums and “old age homes.” The need for quality care and supports for persons living with dementia, as well as support for their care partners and caregivers, is now recognized as a fundamental societal issue, as highlighted in two of five primary goals in the National Plan to Address Alzheimer’s Disease (ASPE, 2020).
Research on care interventions for persons living with dementia and for care partners and caregivers has expanded greatly in the past three decades, and some care-related programs are starting to be disseminated and implemented more broadly (Gitlin et al., 2015; Mitchell et al., 2020). Yet, while there are places where persons living with dementia and their care partners and caregivers are receiving and delivering high-quality care, many are still struggling, lack access to care interventions, and are unable to live as well as they might (NASEM, 2016). Furthermore, it is well known that, compared with non-Hispanic whites, racial and ethnic minorities, such as Blacks, Hispanics, and American Indians/Alaska Natives, have both a higher prevalence and incidence of Alzheimer’s disease and other dementias (Dilworth-Anderson et al., 2008; Gilsanz et al., 2019; Mayeda et al., 2016; Steenland et al., 2016) and less access to care for these conditions, including diagnosis, treatment, and supports (Gianattasio et al., 2019;
Rivera-Hernandez et al., 2019). Furthermore, racial disparities persist in the care persons living with dementia receive. For example, while such harmful practices as the use of feeding tubes in individuals with advanced dementia has decreased in recent years, feeding tube use has remained significantly higher in Black compared with white individuals (Mitchell et al., 2016). Research suggests that Black caregivers may demonstrate greater resilience and may be less likely to experience emotional difficulty (Fabius et al., 2020), and that African American and Hispanic caregivers report more positive attitudes toward caregiving (Dilworth-Anderson et al., 2020). Nonetheless, caregivers in racial/ethnic minority groups, especially women, are also at greater risk of experiencing the financial challenges associated with caregiving (Kelley et al., 2015; Willert and Minnotte, 2019). Despite the progress made in recent decades, then, it is clear that this journey to improve care, services, and supports for persons living with dementia, care partners, and caregivers remains an urgent need.
The body of evidence on care interventions for persons living with dementia and their care partners and caregivers is large and complex. Hundreds of interventions have been tested in randomized controlled trials (RCTs) (Butler et al., 2020; Gitlin et al., 2015). These interventions are designed for persons across all stages of dementia, from early through severe; for different caregivers, including family members, friends, and direct care workers; and for implementation in many settings, including the home and home health care, social service agencies, and institutional settings. In addition, while some interventions have been tested in large RCTs and are beginning to be implemented more broadly in various communities, many more have been tested in academic settings with smaller numbers of participants.
In this context, the National Institute on Aging (NIA) requested that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee of experts to assist NIA and the broader Alzheimer’s disease and Alzheimer’s disease–related dementias (AD/ADRD) community in assessing the body of evidence on care interventions for persons living with dementia and caregivers,1 inform decision making about which interven-
1 The Statement of Task for this study does not specifically mention “care partners,” a term that refers to individuals who collaborate with persons living with dementia, particularly during the early stages of the disease when they are able to co-manage their own care to a greater extent. Such individuals have previously been encompassed by the term “caregiver;” however, the committee opted to distinguish care partners from caregivers in recognition of their different roles and the reciprocal nature of the relationship between persons living with dementia and care partners.
tions should be broadly disseminated and implemented, and guide future actions and research. The committee’s Statement of Task is presented in Box 1-1; Box 1-2 contains definitions for key terms used in this report; and biographical sketches of the committee members and staff are provided in Appendix C.
In accordance with its charge, the committee used as its primary source of evidence a systematic review of evidence on care interventions for persons living with dementia and their care partners and caregivers commissioned and overseen by the Agency for Healthcare Research and Quality (AHRQ) and conducted by the Minnesota Evidence-based Practice Center (EPC) (Butler et al., 2020). The committee also considered additional evidence and stakeholder input, including perspectives from persons living with dementia, care partners, and caregivers, as described in the section on methods below and further in Chapter 5.
The scope of this study and the AHRQ systematic review was broad. It encompassed interventions relevant to individuals with possible or probable AD/ADRD—including Lewy body dementia, frontotemporal dementia, and vascular cognitive impairment/dementia—at all stages of dementia. The scope also included care partners and caregivers who are related to the person living with dementia, such as spouses, family members, friends, and volunteers, as well as direct care workers, such as certified nursing assistants, home health aides, auxiliary workers, personal care aides, hospice aides, promotoras or promotores, and community health workers.
The scope encompassed a wide range of care interventions whose primary target is persons living with dementia, care partners and caregivers, or both together, such as memory evaluation, art therapy, social support, skills training, changes to the physical environment, care coordination, and many more (see Box 1-3 for a full list of examples). Recognizing the multidimensional nature of dementia care, services, and supports, the scope encompassed the wide range of outcomes that are relevant to the health and well-being of persons living with dementia and their care partners and caregivers, including outcomes related to quality of life and subjective well-being, personal and family spending and financial burden, health and functional status, palliative care/hospice, the social/community level, utilization and costs of health care services, quality of care and services, societal costs, and harms (see a full list in Appendix A and in Butler et al., 2020). The scope encompassed as well a full range of settings and services, including home health care, adult day care, acute care settings, social service agencies, nursing homes, assisted living, memory care units, hospice, rehabilitation centers/skilled nursing facilities, long-distance caregiving, and nonplace-based (virtual) settings.
Neither the study nor the systematic review examined pharmacological treatments for dementia, supplements, or natural products. And while it is important to recognize that many persons living with dementia, care partners, and caregivers have other chronic conditions for which they need care, this study did not consider evidence for nonpharmacological interventions that many persons living with dementia may use for other conditions, such as continuous positive airway pressure (CPAP) machines. The systematic review also excluded interventions to provide training toward professional licensing or continuing education for degreed health professionals. Finally, although outcomes related to utilization and costs of health care services were included when reported by the original study authors, a cost-effectiveness analysis was outside the scope of the AHRQ systematic review and this study.
The committee first met in November 2018 to provide input into the design of the AHRQ systematic review. This meeting included an open session in which NIA provided the committee’s charge, leaders from the Minnesota EPC team presented the draft key questions and scope for the systematic review, and the committee invited dementia-related advocacy groups to offer their perspectives (Appendix B includes the agendas for all open sessions held for this study). The committee authored a brief letter report to outline its input for the review design (NASEM, 2018), after which the Minnesota EPC developed a draft review protocol, which was discussed with the committee during a public meeting in February 2019.
Over the next year, the Minnesota EPC conducted the systematic review, and a draft was publicly released in March 2020. The committee reconvened in April 2020 to discuss this draft. This meeting included a day-long workshop, held virtually because of the COVID-19 pandemic. The workshop included presentations by and discussions with representatives from the Minnesota EPC review team; advocacy organizations and associations representing persons living with dementia, care partners, and caregivers; care systems and payers; and academic science. In May 2020, the committee met with a group of persons living with dementia, care partners, and caregivers to hear their perspectives on the draft systematic review and gather their input for this report.
The committee continued to meet virtually over the spring, summer, and fall of 2020, and the final AHRQ systematic review was published in August 2020. The committee’s September 2020 meeting included a brief open session with leaders from the Minnesota EPC and other interested parties to discuss the final version of the systematic review. In addition, a group of persons living with dementia, care partners, and caregivers—some of whom also had participated in the May 2020 open session—served as advisers to the committee during the drafting of this report (see the list of these advisers in the front of the report).
AHRQ Systematic Review Design
The AHRQ systematic review provides a thorough review of evidence from available RCTs on care interventions for persons living with dementia and their care partners and caregivers. The literature search conducted for this 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 significantly to the review analysis. Box 1-4 summarizes the methodology of the review, key questions addressed,
inclusion criteria for studies, and strength-of-evidence descriptions. See Appendix A for the full inclusion criteria and Butler and colleagues (2020) for a complete description of the design of the AHRQ systematic review.
An important step in the AHRQ systematic review was to assess potentially eligible studies for risk of bias—the extent to which the study design and procedures are likely to have guarded against sources of bias that could affect the results. The tool used by the Minnesota EPC to assess risk of bias in studies of individual care interventions considers selection bias, attrition bias, detection bias, performance bias, and reporting bias (for the full tool, see Appendix A in Butler et al., 2020). Studies were classified as having a low, moderate, or high overall risk of bias based on the collective risk of bias across each of these five domains. For care delivery interventions, which were more likely than other interventions to be conducted in care settings and other real-life practice conditions with greater variability, the systematic review assessed only whether bias was over a certain threshold based on selection bias, level of attrition, and fidelity to the intervention. Studies identified as having low or moderate risk of bias were included in an analytic set on which the systematic review’s analysis of strength of evidence was based. Studies identified as having a high risk of bias were included in the systematic review’s evidence maps, which describe which interventions have been studied in the literature but were not included in the review’s further analysis.
The final AHRQ systematic review has several strengths: (1) it is the product of a systematic and extensive effort to survey the body of literature and summarize the state of the evidence; (2) it has clear criteria for including and excluding studies were used; (3) it sheds light on the question of whether any interventions are supported by such conclusive and consistent evidence as to warrant an immediate recommendation for broad use without qualification or further study; and (4) it provides a helpful overview of the evidence landscape, including highlighting which interventions have been the subject of numerous studies, as well as challenges in the field, such as the large number of small-sample and pilot studies without corresponding larger or longer follow-on studies.
Limitations of the Approach and Existing Evidence
The AHRQ systematic review highlights significant challenges in the field. No interventions met the review’s criteria for high-strength or moderate evidence of benefit, and only two types of intervention met the review’s criteria for low-strength evidence of benefit. The ability to draw conclusions regarding the effectiveness of interventions in this domain was impeded by the small number of included studies for most categories of interventions, limitations in study design and execution, and variability across studies
(e.g., in intervention implementation, comparison groups, outcomes measured, and study timing) that prohibited the pooling of data. Over time, standards for research are becoming more rigorous, but this progress is not yet fully reflected in the overall body of literature assessed in the AHRQ systematic review.
The AHRQ systematic review is a high-level assessment of the state of the science designed specifically to inform the question of which interventions, if any, are ready for broad dissemination and implementation. The AHRQ systematic review authors made decisions through this lens, including the exclusion of studies judged to be pilots, that inform the interpretation of the review findings and conclusions (see Chapter 5 for further discussion). Had the review targeted specific interventions in more depth and included research-setting efficacy studies without applying the lens of readiness for dissemination and implementation, the analysis and conclusions might have looked different.
Mixed results observed across RCTs may reflect heterogeneity in enrolled populations, settings, or other contextual factors. Given the wide range of needs, values, preferences, and desires of persons living with dementia, care partners, and caregivers, many interventions in this domain appropriately begin from the premise of individualization. It is also entirely expected that interventions will vary in effectiveness across different populations and in different settings. Furthermore, many factors beyond effectiveness that are critical for successful implementation, such as integration into workflow, may vary across settings, but these differences may be obscured as results are synthesized in a broad-scope systematic review. Given that these variations are inherently expected, and given the limitations in study design observed in many studies in this field, it is currently impossible to determine via a high-level systematic review of such a multifaceted situation whether an intervention is ineffective, whether it is effective but only for some people or in certain settings, or whether only certain of its elements are effective.
The systematic review is also necessarily limited to existing literature; it cannot synthesize evidence that does not yet exist, and it also reflects past research priorities. In the context of dementia care, this basic fact presents two particular challenges. First, while the situation is changing, the perspectives of persons living with dementia, care partners, and caregivers have historically not been central to identifying the needs, interventions, and outcomes to be studied by research (Gove et al., 2018). As a result, the studies evaluated in the systematic review often do not address the clinical significance of the findings, that is, whether the effect being demonstrated really matters to stakeholders. Moreover, interventions that target important outcomes for persons living with dementia, care partners, and caregivers may be absent from the existing literature. Second, racial and ethnic minorities have been significantly underrepresented in most dementia care
studies (e.g., Dilworth-Anderson et al., 2020). Interventions that effectively address their needs may similarly be absent from the literature, or may be present in smaller studies that are not considered in the systematic review’s analysis.
Lastly, it is important to recognize that the systematic review approach largely precluded consideration of evidence related to systems-based interventions. Examples of such interventions include the introduction of dementia care planning codes or dementia quality measures, or the effects of state or federal policy related to support for family caregivers or training for direct care workers, which do not lend themselves to assessment via an RCT.
Use of the GRADE Evidence to Decision (EtD) Framework and Supplemental Evidence
Consistent with its charge, the committee relied on the findings from the AHRQ systematic review to identify the interventions recommended for widespread dissemination and implementation with monitoring and evaluation, quality improvement, and information sharing. In addition to effectiveness, however, many factors need to be considered in determining whether broad implementation of an intervention is appropriate.
To inform its recommendation regarding dissemination and implementation, the committee applied the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence to Decision (EtD) framework to the two types of interventions identified in the systematic review as supported by low-strength evidence of benefit. The EtD framework can be applied to making and using clinical recommendations, coverage decisions, and health system and public health recommendations and decisions (Moberg et al., 2018). Factors taken into account in the EtD assessment can include the priority of the problem, how substantial the benefits and harms are, the certainty of the evidence, the value of the outcomes to stakeholders, how the intervention in question compares with others, resource requirements, cost-effectiveness relative to comparable options, the impact on health equity, the acceptability of the intervention to stakeholders, and the feasibility of implementation. For this assessment, the committee supplemented the AHRQ systematic review’s analysis with additional evidence from published papers describing different adaptations and implementations of these two types of interventions. Some of these studies (e.g., studies with a single pre–posttest) used methodologies that did not meet the AHRQ systematic review’s inclusion criteria. Nevertheless, as a complement to the studies included in the AHRQ systematic review, these studies provide such information as feasibility, equity, and resources required, which are important to inform decisions about implementation in the real world.
To guide research investments going forward and to extract the maximum value from the large body of interventions for which the evidence was determined to be insufficient, the committee sought to identify gaps in and opportunities to improve and expand the evidence base for dementia care interventions. As part of this assessment, the committee considered interventions for which there is some signal of benefit and that are unlikely to cause harm. A signal of benefit may be insufficient to recommend interventions for broad dissemination and implementation, which was the focus of the AHRQ systematic review and necessitates a high level of certainty in the evidence. However, the committee believed that a more holistic view of the available evidence—including input from persons living with dementia and their care partners and caregivers regarding their values, preferences, and needs—is appropriate to guide future research. Therefore, in addition to examining the AHRQ systematic review’s intervention categories for potential signals of benefit, the committee considered such sources as stakeholder testimony during the committee’s public information-gathering meetings, including testimony from persons living with dementia, care partners, and caregivers and representatives from advocacy organizations, professional associations, care systems, and payers; the Best Practice Caregiving database, which provides information from real-world implementation of interventions in practice settings (Benjamin Rose Institute on Aging and FCA, 2020a); and reports and presentations from the two National Research Summits on Care, Services, and Supports for Persons with Dementia and Their Caregivers (Gitlin and Maslow, 2018; Sferrazza, 2020). The committee’s approach to assessing the evidence is described in greater detail in Chapter 5.
Reflecting the importance of its topic, this report falls within a broad set of initiatives aimed at advancing the development of and disseminating information about care, services, and supports for persons living with dementia and their care partners and caregivers. In addition to extensive research under way in academic settings, including at large dementia-focused centers, this section briefly mentions several of these initiatives. Additional research and nonresearch programs and initiatives relevant to improving dementia care, services, and supports are discussed in Chapter 4.
Two National Research Summits on Care, Services, and Supports for Persons with Dementia and Their Caregivers2 in 2017 and 2020 con-
2 The webpage for the National Research Summit can be accessed at https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers (accessed January 28, 2021).
vened professionals and stakeholders from diverse backgrounds to identify evidence-based programs and research priorities that could improve the current state of care, services, and supports for persons living with dementia and caregivers (NIA, 2020). With a forward-looking focus aimed at driving future research and action, these summits have produced a number of recommendations regarding dementia care and research across 12 themes based on contributions from researchers, clinicians, and stakeholders, including persons living with dementia, care partners and caregivers, service providers, government programs, and payers (Gitlin and Maslow, 2018; Sferrazza, 2020).
Recognizing the need to accelerate and improve methods for testing and adoption of evidence-based interventions within health care systems, NIA also initiated and supports the IMbedded Pragmatic Alzheimer’s disease and related dementias Clinical Trials (IMPACT) Collaboratory.3 Established in 2019, the IMPACT Collaboratory is intended to build capacity for conducting pragmatic clinical trials of interventions embedded within health care systems by developing best methodological practices; supporting pragmatic clinical trials, including pilots, as well as training and dissemination of knowledge; supporting collaboration; and ensuring that research includes cultural tailoring and people from diverse and underrepresented backgrounds (NIA IMPACT Collaboratory, n.d.).
The Best Practice Caregiving database compiles evidence-based interventions for caregivers that have been implemented as a regular service of a community or health care organization.4 The database includes information on the components, implementation, and effectiveness of more than 40 caregiver interventions (Benjamin Rose Institute on Aging and FCA, 2020b). In providing this information, Best Practice Caregiving aims to promote the broader uptake of these interventions by health and social service organizations (Benjamin Rose Institute on Aging, 2020).
A recently published report by the Lancet Commission, produced by an international group of dementia researchers and other experts and policy makers, highlights several interventions that have demonstrated evidence of improving outcomes for persons living with dementia and their care partners and caregivers. The Lancet Commission’s findings prioritize evidence that is likely to have the greatest potential for impact in the global effort to find effective dementia care interventions (Livingston et al., 2020).
Finally, the National Academies is currently conducting a decadal survey to inform a research agenda for behavioral and social science research
on AD/ADRD during the next decade (2020–2030). Drawing on extensive input from the scientific community and other stakeholders, the committee appointed to undertake that study has been asked to assess the role of the social and behavioral sciences in reducing the burden of AD/ADRD (NASEM, 2020).
Following this introductory chapter, Chapter 2 outlines guiding principles for and core components of dementia care, services, and supports that recognize persons living with dementia as unique individuals and aim to support them, as well as their care partners and caregivers, in living well. Chapter 3 describes the complex systems in which dementia care, services, and supports are delivered. This chapter includes the committee’s multilevel systems framework for care interventions for persons living with dementia and their care partners and caregivers. Chapter 4 outlines the committee’s approach for evaluating the evidence on which interventions are ready for broad dissemination and implementation. This chapter includes a discussion of implementation science and stakeholder perspectives on making decisions about whether and how to implement interventions. Chapter 5 provides the committee’s analysis of the available evidence and recommendations regarding the implementation of the two types of interventions for which the AHRQ systematic review found low-strength evidence of benefit—collaborative care models and REACH (Resources for Enhancing Alzheimer’s Caregiver Health) II and its adaptations—with monitoring and evaluation, quality improvement, and information sharing. This chapter also provides additional assessment of the current state of the evidence, and identifies research gaps and opportunities. Finally, Chapter 6 presents a blueprint for future research, including an emphasis on addressing the needs and desires of persons living with dementia and their care partners and caregivers, cross-cutting methodological improvements for future studies that would enhance the strength of evidence in this field, prioritization of inclusive research, and a focus on assessing effectiveness in the real world.
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