Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities

Abstract

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

Keywords

caregiver randomized controlled trial real world settings research-practice gap

What this paper adds

• 31 evidence-based dementia caregiver interventions have associated implementation efforts.

• Few implemented dementia caregiver interventions are set in hospitals/medical centers or combinations of settings.

• Few implemented dementia caregiver interventions have improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies.

Applications of study findings

• Additional intervention development can target understudied settings and outcomes, but these gaps may also be filled by increasing implementation efforts for efficacious interventions that have not yet been implemented broadly.

• The rapid iteration and improvement in behavioral interventions that is required to implement effective interventions in real world settings may be achieved, in part, by supplementing traditional systematic review methods to synthesize research in implementation through a wide range of sources that extend beyond traditional academic literature.

• While these outcomes and settings are worthy of future intervention/implementation efforts, not all interventions should try to fill every gap. Instead, we encourage interventionists to consider these gaps and explore whether filling them using their particular intervention could better serve PLWD and their carepartners.

Introduction

The dementia care literature includes many individual psychosocial interventions that improve outcomes for care partners (family, friends, fictive kin; CP) of persons living with dementia (PLWD; Butler et al., 2021; Gitlin, Jutkowitz, et al., 2020; Larson & Stroud, 2021; Livingston et al., 2020). Notably many of these interventions also affect outcomes for PLWD directly. There is some disagreement about the preparedness of these interventions for implementation on a large scale (Butler et al., 2021; Gaugler et al., 2021; National Academies of Sciences, Engineering, and Medicine, 2016), but the vast majority of efficacious trials have not been implemented in real world settings. When implementation does happen, it takes an exceptionally long time and sustainability is questionable (Gitlin et al., 2015; Hodgson & Gitlin, 2021). To this end, considerable effort and investments are underway to facilitate the implementation of efficacious trials in real world dementia care contexts (Mitchell et al., 2020).

The present paper examines the outcome measures used in existing intervention studies and the sites in which they were tested. The goal is to derive outcome and setting recommendations for future dementia care interventions to be implemented in real world settings. We present an evidence map that provides a visual display of key characteristics of existing interventions. Rather than following the format of a traditional systematic review, the present work extracts data from a wider range of sources to identify gaps and opportunities for translating interventions for delivery in real world settings. Systematic reviews typically include interventions tested in randomized trials and exclude translational efforts. In contrast, evidence maps entail “search of a broad field to identify gaps in knowledge and/or future research needs that presents results in a user-friendly format, often a visual figure or graph, or a searchable database” (Miake-Lye et al., 2016, p. 18).

The present study includes data sources that follow more traditional review methods (e.g., scoping review) as well as those that are less traditional, but more likely to capture appropriate interventions (e.g., targeted efforts to compare dementia care programs that are being implemented). These sources are augmented by expert review by a core of researchers brought together by the National Institute on Aging’s Imbedded Pragmatic Alzheimer’s and AD-Related Dementias Clinical Trials (IMPACT) Collaboratory to explicitly focus on implementation of dementia care interventions. An evidence map of settings and outcomes of existing intervention efforts will facilitate an understanding of gaps in dementia care interventions that are in an implementation phase. This understanding can, in turn, inform the next generation of implementation research in dementia care. Moving evidence to practice is a world-wide imperative in dementia care (Baker et al., 2022) to improve the quality of life of individuals and their family members.

Method

Search Strategy

The following sources were searched to identify dementia care interventions for CPs that might have past or ongoing implementation efforts¹: (1) the Best Practice Caregiving (BPC) database (Maslow et al., 2021a; Rentscher, 2019), (2) a scoping review of translational CP programs in dementia (Hodgson & Gitlin, 2021), (3) expert recommendation by a panel of implementation-focused dementia care scientists (Gitlin, Baier, et al., 2020), (4) an American Association of Retired Persons (AARP) Policy Paper on dementia CP supports (Feinberg, 2017), (5) a commissioned paper for the National Institute on Aging (NIA) Decadal Study of Dementia Caregiver Intervention Research (Gitlin et al., 2020b), (6) an Agency for Healthcare Research and Quality (AHRQ) comparative effectiveness report of dementia care interventions (Butler et al., 2021), (7) a chapter from a consensus study report on dementia care from the National Academies of Science, Engineering, and Medicine (Larson & Stroud, 2021), (8) a Lancet Commission Report on dementia (Livingston et al., 2020), and (9) three chapters from a book on behavioral intervention research (Gitlin & Czaja, 2015). Some of these sources are static (e.g., those in the published literature), while others are updated periodically (i.e., BPC). The present review is current as of August 22, 2022. Information including background, method of identifying interventions, rationale for selection, and unique number of included interventions identified through each source are provided in Table 1. For more information about this search strategy, why certain sources were selected, and why it was chosen over more traditional methods like database searches, please consult the online supplement.

Table 1.

Evidence Map Data Sources.

Source	Background	Source’s Process of Identifying Dementia Care Interventions	Rational for Selection of Source in the Present Evidence Map	Number of Included Interventions Originally Identified in this Source^a
Best Practice caregiving (BPC) database (Maslow et al., 2021b)	This source is a collaboration between the Benjamin Rose Institute on Aging, the Family Caregiver Alliance, the Gerontological Society of America, and Quality Process. It was created following a National Academies report suggesting that many dementia care programs that are ready for implementation have not yet been incorporated into community offerings (National Academies of Sciences & Medicine, 2016).	Programs included in BPC had to: 1) have one or more trial(s) or pre-post study that a) had a sample with at least 50% of caregivers assisting a relative or friend with dementia, b) be conducted in the United States, and c) demonstrate at least 1 statistically significant, published, beneficial caregiving outcome; 2) have one or more implementation(s) wherein the intervention was delivered as part of an organization’s regular service portfolio; and c) were able to offer permission or a license to offer the program, along with any required delivery tools. BPC includes implementation efforts that are in the process of testing and meeting the aforementioned criteria. If the original program validation was published in 2005 or earlier and no recent implementation efforts were identified, these interventions were not included on BPC (K. Maslow, personal communication, May 28, 2020).	Offers depth and breadth of interventions including those for which implementation efforts may not have been published in academic journals.	24
Scoping review of translated interventions Hodgson and Gitlin (2021)	This review summarized published studies on the translation of evidence-based family care programs for dementia in different care settings.	Twenty-eight full text articles were identified via a search of Google Scholar, EMBASE, and SCOPUS and fit the following inclusion criteria: 1) participants were family caregivers (fictive kin, blood relatives, and/or neighbors) who had an active role in the provision of care for an adult with dementia; 2) programs were directed toward improving caregiver support, functioning, well-being, or ability to provide care; 3) the program included published evidence of efficacy or effectiveness for one or more caregiver-related outcome(s); 4) the program had one or more prior publications of the original study design with at least two conditions, one of which was required to be a control condition; and 5) were published in English based on US trials since 2005.	This was a recent scoping review that adhered to traditional systematic review principles and methods.	2
Expert review and recommendations	Nationally recognized experts in dementia care and implementation science were consulted from the IMbedded Pragmatic Alzheimer’s disease and related dementias Clinical Trials (IMPACT) Collaboratory Implementation Core (Gitlin et al., 2020a). The National Institute on Aging (NIA) convened the IMPACT Collaboratory to build capacity within the US to conduct pragmatic clinical trials of interventions embedded within health care systems for people living with dementia and their care partners (Mitchell et al., 2020).	Experts were asked to review the database of trials developed from the BPC and scoping review to identify additional trials for possible inclusion.	These experts are involved in and advise a wide range of trials and implementation efforts internationally and therefore may be aware of efforts not captured by the previous two sources.	1
American association of retired persons (AARP) policy paper on dementia care partner supports (Feinberg, 2017)	This policy paper, published by the AARP, presented an overview of the strain caused by family caregiving and provides a selection of six evidence-based dementia care partner interventions that have shown promising results in trials and have been implemented in real world settings. This policy paper presented support for the adoption of these six interventions nationwide as a means of addressing and reducing caregiver strain.	A selection of six dementia care partner interventions that met the following criteria were discussed: 1) persons living with dementia were community-dwelling and at home; 2) the intervention was non-pharmacologic; 3) the intervention previously showed positive outcomes in at least one randomized controlled trial conducted in the United States; 4) the intervention showed positive outcomes for both the person living with dementia and the care partner; 5) the intervention had at least one instance of replication or translation in a community setting. The original pool of interventions from which the selected six were drawn was not discussed.	This paper included only interventions with documented evidence of implementation in a community setting.	1
National institute on aging (NIA) commissioned decadal study (Gitlin et al., 2020b)	This review of reviews was a commissioned paper developed by dementia care and implementation science experts.	A review of reviews was performed which examined 1) scoping, meta-analysis and systematic reviews of interventions for family care partners; 2) Cochrane reviews and other selected reports focused on care partner interventions; 3) recently published studies including protocols and pragmatic trials of family care partner interventions; 4) review and individual studies of interventions focused on formal care providers. The search for family care partner interventions yielded 28 scoping, meta-analytic, and systematic reviews assessing > 200 interventions, three Cochrane Reviews, and three additional recently published/protocol-stage studies.	This review of reviews cast a broad net and identified well over 200 interventions, giving it strong potential to identify interventions that may have been missed in other sources.	0
Agency for healthcare research and quality (AHRQ) comparative effectiveness report (Butler et al., 2021)	This AHRQ sponsored systematic review synthesized both the evidence base and potential for dissemination and implementation of care interventions for persons living with dementia, family care partners, and formal care providers.	Comprehensive systematic review identifying 9,217 unique references with 627 unique studies and 267 associated articles meeting eligibility criteria: 1) randomized controlled trials and quasi-experimental observational studies; 2) enrolled participants included persons living with Alzheimer’s disease or related dementias and/or their family care partners or formal care providers. Searched Ovid Medline, Ovid Embase, Ovid PsycINFO, CINAHL and the Cochrane Central Register of Controlled Trials (CENTRAL) through March 2020.	This was a recent systematic review that adhered strictly to traditional systematic review principles and methods and was sufficiently broad to capture interventions missed in other sources.	2
Consensus study report (National Academics of Sciences, Engineering, and Medicine, 2021)	A companion to the AHRQ Comparative Effectiveness Report (Butler et al., 2021), this consensus study report discussed and assessed the findings of the AHRQ report, highlighting the most promising interventions and providing recommendations for turning the AHRQ report’s findings into practice.	Chapter 5 included an assessment of a sub-group of 54 interventions included in the AHRQ Comparative Effectiveness Report (Butler et al., 2021) that have already been implemented in real world settings or show promise for future implementation.	Used as a cross-reference with AHRQ report to ensure coverage of interventions with evidence of implementation.	1
Lancet commission report (Livingston et al., 2020)	A landmark report published by the 2020 Lancet Commission on dementia prevention, intervention, and care, which discussed 12 modifiable risk factors for dementia and existing options for diagnosis and care for primarily persons living with dementia but also family care partners and formal care providers.	No systematic review of dementia family care partner interventions, however a section of this landmark report did highlight one dementia care partner intervention.	Given the importance of this report and panel of top dementia experts listed as authors, this report was reviewed to ensure adequate coverage of interventions potentially overlooked by other sources.	0
Behavioral intervention research book chapters (Gitlin and Czaja, 2015)	Broadly focused on designing, implementing, and evaluating evidence-based behavioral interventions, this book used case study examples from the dementia care partner intervention literature throughout and was authored by two experts in dementia care partner interventions.	Chapters 19–21 discussed the implementation and dissemination of behavioral interventions. Numerous dementia care interventions were mentioned as exemplars and case studies of successful implementation efforts.	Given the focus of this book and chapters on implementation and dissemination of behavioral interventions, this book was referenced to ensure adequate coverage of implemented interventions that may have been missed in the other sources.	0
				31

^aWhile many of the interventions reviewed in this evidence map were documented in more than one of the above sources, the source in which the intervention was first identified is denoted as the original source. The Best Practice Caregiving database (Maslow et al., 2021b) was the first source reviewed and therefore is attributed the most interventions. Sources denoted as providing zero interventions did reference interventions; however, these either did not meet eligibility criteria or were captured by another source.

Procedure

Inclusion Criteria

Included interventions (1) were tested in a randomized controlled trial; (2) demonstrated a statistically significant benefit for one or more CP outcomes; (3) reported in an English-language, peer reviewed journal; (4) were tested in the US; (5) were non-pharmacologic; (6) had not been substantially modified from the original version of the intervention (Intervention translations or modifications that were separately published were excluded from this evidence map); and (7) had evidence of intervention implementation (whether or not that implementation evidence was published).

Information Extracted

From each included intervention, we extracted the following intervention characteristics: (1) dose and intensity (i.e., number of sessions, duration of intervention, and length of each session); (2) modality (in-person, online, and/or telephone), (3) provider-client ratio (1:1 intervention-CP, 1:2 interventionist-dyad, self-guided, group setting); (4) setting(s) (home, hospital/medical center, community space, and/or telephone/web-based); (5) outcomes for the PLWD, and for the CP. Information on interventions, outcomes, and associated publications were stored in the online database management system, Airtable (Airtable, n.d.).

After the above information was extracted, a list of measures used to evaluate outcomes in the trials was also compiled in Airtable. The use of each measure across trials was examined and the following characteristics determined: (1) if measure targeted CP or PLWD; and (2) if measure had previously been psychometrically tested or was newly investigator-developed within that trial.²

Categorizing Settings

Delivery settings included: (a) either Community spaces, Home, remote via Telephone/Web, or Hospitals/Medical Centers; (b) one of six combinations of two settings (e.g., Home + Telephone/Web); (c) one of four combinations of three settings (e.g., Community + Home + Telephone/Web); or (d) the combination of all four settings (i.e., Community Space + Home + Hospital/Medical Center + Telephone/Web). This rendered a total of 15 possible settings or combinations of settings, and each intervention was categorized into just one of those setting or combination categories.

Categorizing Outcome Domains

Three authors, representing a broad range of disciplines (i.e., nursing science, psychological science, and rehabilitation science), were blinded to which intervention used each measure (JS, ZB, AG). These three independently examined all intervention measures and categorized them by conceptual domains using an emergent (i.e., inductive) approach (Creswell & Poth, 2016). Each author examined the measures that fell broadly within their area of expertise: a fourth author (MD) then sorted measures into the categories used in the Dementia Caregiving Model (Liu et al., 2012). The Dementia Caregiving Model is derived from both stress and coping (Lazarus & Folkman, 1984) and two-factor (Lawton et al., 1991) models and was chosen for the present categorization because of its classification of a wide range of variables that describe and affect the CP experience. For measures that did not fit into the model, additional categories were developed and agreed upon by consensus across these four authors. Following this first stage of categorization, JS, ZB, and AG (who were blinded to MD’s categorization) repeated the process and categorized the measures into the established categories. Categorization inconsistencies were resolved through discussion until consensus was achieved.

Results

Study Characteristics

We identified 190 interventions (Figure 1). Eighty-two were excluded for testing outside the US, 22 were excluded for not employing a randomized controlled trial, 6 were excluded for lacking a statistically significant CP outcome, 39 were excluded for lacking evidence of implementation, and 10 were excluded as translations of included interventions not representative of the original efficacy trial and sample. This resulted in a final sample of 31 unique interventions that are included in the present evidence map (Figure 2).

Figure 1.

Prisma diagram of inclusion/exclusion of interventions.

Figure 2.

Many interventions tested and reported outcomes in multiple domains and used measures that were inherently multidimensional.

Evidence Map Database

The database of included interventions and coded variables can be found at https://airtable.com/shrGVBN2mEB49zzXd and is offered for open use.

Intervention Characteristics: There was considerable variation in the format of interventions. Twenty-two interventions (70.97%) had a fixed number of sessions ranging from three to 56 sessions. Nine interventions (29.03%) did not have a fixed number of sessions, with some interventions instead having a set minimum or maximum. Session length was similarly variable with 14 interventions (45.16%) reporting varying lengths and the remaining 17 interventions (54.84%) reporting lengths ranging from 15 minutes to two and a half hours. Similarly, intervention duration was variable ranging from two weeks to over one year, with seven interventions (22.58%) reporting no fixed duration. Finally, the ratio of interventionist to client varied with eight (25.81%) interventions having a 1:1 ratio of interventionist to CP, seven (22.58%) having a 1:2 ratio of interventionist to dyad (i.e., CP and PLWD), and seven (22.58%) having a 1:many ratio of interventionist to a group of CP. The remaining 9 (29.03%) interventions were predominantly combinations of the aforementioned ratios or were self-guided.

Findings by Setting

Of the 31 unique interventions, 21 (67.74%) were confined to a single setting (eight Community, six Home, seven Telephone/Web). No interventions were conducted solely in a Hospital/Medical Center setting. Nine interventions (29.03%) were delivered in dual settings with one combining Home + Hospital/Medical Center and the remaining eight combining Telephone/Web administration with another setting (four Home, two Hospital/Medical Center, two Community). The sole remaining intervention combined all four settings. Collapsing across combinations, most settings were well represented with 11, 12, and 16 interventions making at least partial use of community space (35.48%), home (38.71%), and telephone/web (51.61%), respectively. Hospital/medical centers were comparatively much more poorly represented, being used in just four interventions (12.90%).

Findings by Outcome Domain

Across the 31 studies included in this review, 133 different measures were used to assess CP and/or PLWD outcomes. The 133 outcome measures were categorized into 21 different domains (12 CP-specific domains; six PLWD-specific domains; and three dyadic domains). These domains are presented in Table 2, and measures assigned to each domain can be viewed at https://airtable.com/shrGVBN2mEB49zzXd. Outcome measures could be assigned to more than one domain given the multi-dimensional nature of certain measures (For instance, the REACH II Caregiver Self-Rated Physical and Emotional Health Questionnaire assesses both the domain of CP physical health and the domain of CP psychological health).

Table 2.

Outcome Categories.

Care Partner (CP)	Person Living with Dementia (PLWD)
Appraisal: Objective burden	PLWD health: Physical
Appraisal: Subjective BURDEN	PLWD health: Psychological
Appraisal: Satisfaction	Context: PLWD resources (e.g., perceived social support)
CP internal resources (e.g., self-efficacy)	PLWD coping: Positive strategies
CP health: Physical	PLWD coping: Negative strategies
CP health: Psychological	Institutionalization/Formal care utilization
Context: CP beliefs on providing care	Shared (CP and PLWD)
Context: CP resources (e.g., perceived social support)	Relationship quality
CP coping: Positive strategies	Quality of Life/Well-being
CP coping: Negative strategies	Other
CP stressor: Behavioral disability of PLWD
CP stressor: Functional disability of PLWD

The frequency of measures across domains differed vastly. For instance, less commonly assessed outcomes included CP beliefs about providing care (6.45%), CP negative coping strategies (16.13%), PLWD social support (6.45%), PLWD positive coping strategies (3.23%), and PLWD negative coping strategies (3.23%). In contrast, more commonly assessed outcomes included CP objective burden (35.48%), CP internal resources (51.61%), CP physical health (32.26%), CP positive coping strategies (35.48%), CP behavioral (54.84%) and functional stressors (41.94%), PLWD physical health (45.16%), and institutionalization/formal care utilization (38.71). Three outcome domains were assessed in most of the trials: CP subjective burden (80.65%), CP psychological health (93.55%), and PLWD psychological health (87.10%).

The frequency of measures assessing outcomes dyadically also varied. Some measures inherently included both members of the CP-PLWD dyad together (i.e., relationship quality, quality of life). Other measures could be assessed for either member of the dyad, but evaluation of these outcomes showed that some outcomes were assessed more frequently for one party than another. Among those outcomes were those in the domains of psychological health, physical health, resources (e.g., social support), positive coping strategies, and negative coping strategies.

The most studied outcomes fell within the domain of psychological health, which was examined in 30/31 (96.77%) interventions (cf. Stern et al., 2008). In 26/31 interventions (83.87%), psychological health was assessed for both the CP and the PLWD. In 3/31 interventions (9.68%), psychological health was only assessed for the CP, and in 1/31 interventions (3.23%), psychological health was only assessed for the PLWD.

Findings for physical health contrasted markedly from psychological health, being studied in far fewer interventions (18/31; 58.06%). Interventions that assessed physical health (n = 18)³ did so in both parties in 6/18 interventions (33.33%), in CPs only in 4/18 interventions (22.22%), and in PLWD only in 8/18 interventions (44.44%).

Outcomes in the remaining domains were substantially more skewed toward being assessed only in CPs. Within interventions that measured internal resources (e.g., self-efficacy) (n = 16/31 interventions; 51.61%), social support resources, (n = 8/31 interventions, 25.80%), positive coping strategies (n = 12/31 interventions; 38.71%), and negative coping strategies (n = 6/31 interventions; 19.35%), only CPs were assessed in 16/16 (100%), 4/8 (50%), 11/12 (91.67%), and 5/6 (83.33%) of interventions, respectively. Interventions that measured effects on social support resources, assessed both PLWD and CPs in 3 interventions (3/8; 37.50%), but no interventions assessed positive (0/12; 0%) or negative coping strategies (0/6; 0%) for both PLWD and CPs. The remaining interventions assessed social support resources (1/8; 12.50%), positive coping strategies (1/12; 8.33%), and negative coping strategies (1/6; 16.67%) for only the PLWD.

Discussion

In the context of the 200+ evidence-based dementia care interventions that have been developed and tested, the present evidence map found 31 that have been or are currently being implemented in real world contexts and have evidence of benefit for CPs. Supporting the value of this evidence map methodology relative to traditional review methodologies, for the present goals, no past reviews (Butler et al., 2021; Gitlin et al., 2020b; Livingston et al., 2020), contained all relevant interventions, to our knowledge. The present evidence map reveals interesting gaps and opportunities in measurement of focal outcomes of interventions that have been implemented. Trials for interventions that were implemented tended to (1) be delivered in single settings or single settings augmented by telephone/web; (2) assess CP subjective burden, CP psychological health, or PLWD psychological health; and (3) assess outcomes in CPs more often than in PLWD. Trials that were implemented tended not to: (1) take place in hospitals/medical centers; (2) take place in multiple settings (other than those combined with telephone/web); or (3) assess CP beliefs about providing care, CP negative coping strategies, PLWD social support resources, or PLWD coping strategies.

These gaps may be driven by multiple factors. For instance, it is possible that the present understudied outcomes and settings are understudied because creating interventions that operate in those settings or that affect those outcomes are not beneficial to CPs and PLWD. It is also possible that there are immovable structural challenges that are making intervention in these settings or with these outcomes impossible. A third possibility is that researchers are not creating and implementing interventions that operate in these settings or affect these outcomes. We discuss below why these settings and outcomes may matter and how researchers may benefit by giving them consideration when designing, adapting, and implementing interventions.

Implemented Intervention Gaps and Recommendations

Understudied Settings

Future interventions designed to benefit CPs and PLWD might target settings that received relatively less attention in the reviewed interventions like hospitals/medical centers and combinations of settings (other than through telephone/web-based settings).

Hospitals/Medical Centers

Relatively few interventions included in the evidence map had been implemented in hospitals/medical centers. One possible issue with solely setting interventions in hospitals/medical centers is that CPs are often not the patients of those settings thus knowing how their outcomes have been affected by hospital/medical center-based interventions may be challenging. One explanation for this may be the medical model’s focus on the PLWD (i.e., the patient) and not the CP (for whom reimbursement for services is not available unless the CP is being treated separately). An alternative medical model might take a more holistic, person and family centric approach (Cohen et al., 2022). The medical model could do this by incorporating the role and impact of the CP’s well-being on the health of the patient (i.e., PLWD). The health of the PLWD would then, in-turn, impact outcomes important to hospitals/medical centers, like healthcare utilization or quality or life. Still, such substantial changes to the medical model, while offering benefits, represent large undertakings requiring systemic change and increased efforts by staff who work in these settings.

Notably each of the interventions from the evidence map that did incorporate hospitals/medical centers also incorporated telephone/web settings. Given that incorporating telephone/web may be a one way to improve access, interventionists may consider doing likewise. Increased feasibility for this may result from recent trends associated with the COVID-19 pandemic: telehealth has rapidly become more frequently used, more acceptable, and there are more emerging payment models. Relatedly, we found a narrow band of outcome measures repeatedly used in these trials and while they may be of interest to CPs, they may not fully align with what the health system believes matters (e.g., decline in health care utilization, cost analyses). To better incorporate these settings, it will be important for interventions to assess and show benefit for the outcomes that matter most to stakeholders in those settings.

Multiple Settings

Far more interventions took place in individual settings (e.g., solely in Community or Home settings), rather than a combination of settings (e.g., in both Community and Home settings). One explanation is that multiple settings can increase the complexity of delivering an intervention. At the same time, many CPs of PLWD access multiple settings on a regular basis, thus employing multiple settings in an intervention may be more likely to (1) reach CPs and (2) improve the capacity of the intervention to improve outcomes of interest.

A greater capacity of interventions to improve outcomes of interest when using multiple settings may arise from the ability of an intervention to touch CPs and PLWD in many domains of life. For instance, an intervention that takes place solely in the home may have less impact following institutionalization. Likewise, the effects of an intervention taking place solely in community settings may become more difficult to maintain if CPs and PLWD move to a new community or if their condition advances to a point when they have trouble entering community settings. By interfacing with CPs and PLWD across settings, the impact of an intervention may be more likely to continue having positive impacts through care and disease severity transitions. Still, these potential benefits come with costs (e.g., interventionist, CP, and PLWD time; training and maintenance of fidelity across heterogenous providers in a range of settings). Therefore, researchers creating interventions will have to carefully weigh costs and benefits when making intervention setting design decisions.

As recommended above, telephone/web may be one simple way to employ multiple settings, but we encourage researchers and healthcare systems to also think creatively about how their interventions might be applied across multiple settings. Adaptations of interventions and implementation strategies may be needed to deploy across different settings simultaneously. This may also speak to the need for stronger cross-sector collaborations (and incentives to form them). But we do want to be clear that identifying this gap should not be taken to mean that all interventions should apply in all settings. Instead, we encourage researchers to give increased consideration to whether their interventions might benefit from administration across multiple settings.

Understudied Outcomes

Future interventions designed to benefit CPs and PLWD might target outcomes that received relatively less attention in the reviewed interventions like CP beliefs about providing care, CP negative coping strategies, PLWD social support resources, and PLWD positive and negative coping strategies.

PLWD Outcomes

Because one criterion of interventions for the present evidence map was that there be a statistically significant impact on a CP outcome, it is possible that interventions to improve PLWD resources and coping strategies may be underrepresented. If this is the case, it seems like a missed opportunity, given that several interventions assessed these outcomes in CPs. Decades of foundational relationship theory demonstrate that the experience of a family or friend affects the experience of another family member or friend (Van Lange & Balliet, 2015). Accordingly recent work demonstrates that CP interventions improve outcomes for PLWD (Cheng et al., 2022) and researchers should consider inclusion of PLWD outcomes in CP interventions. It seems likely that many interventionists intuited this point given that 81% of included interventions did evaluate PLWD outcomes. Moreover, PLWD social support and positive/negative coping align quite well with the core outcome set as agreed upon by PLWD, care partners, health and social care professionals, researchers, and policymakers (Reilly et al., 2020). For instance, social support has obvious alignment with the single most endorsed outcome of importance by PLWD: the importance of relationships. Similarly, coping strategies might help PLWD to feel more fulfilled in each of the other categories when inevitable setbacks or challenges arise, allowing for a greater resilience to those setbacks/challenges.

CP Outcomes

Lacking from reviewed interventions were the outcomes of CP beliefs about providing care and CP negative coping strategies. One important reason to develop interventions that improve beliefs and relieve or resolve negative coping strategies is that those with negative beliefs and negative strategies may do significant harm to both the PLWD and themselves. For instance, those with unhealthy beliefs about caregiving may be most at risk of providing poor-quality care (Phillips et al., 1989). Likewise CPs with more negative coping strategies may experience more impairments in mental health and work than those with fewer negative coping strategies (Bond et al., 2011). One might argue that these outcomes are distal and that efforts are better targeted toward directly improving outcomes like quality care. We agree that in some scenarios those strategies may be beneficial, but they are unlikely to be a panacea. For instance, if care improves temporarily, it may be challenging to sustain those improvements in the face of harmful beliefs or negative coping strategies. Moreover, even if those care improvements were sustained, harmful beliefs and negative coping strategies mean, by definition, that the caregiver continues to suffer.

Limitations and Future Directions

Some limitations directly result from inclusion criteria selected for the present evidence map. While we feel these criteria were appropriately chosen to raise confidence in conclusions, they do limit generalizability. For instance, all interventions were tested in the US. While this increases intervention homogeneity and comparability, dementia is a global problem, warranting similar investigations on a global scale and more attention needs to be paid to low- and middle-income countries where most PLWD reside (Baker et al., 2022). Likewise, because of the focus on interventions that affect CP outcomes, the results concerning PLWD outcomes may be underrepresented (cf. the widespread measurement of PLWD psychological health across interventions). Another implication of the inclusion criteria (i.e., focusing on original iterations of interventions) means that adaptations were not included. Adaptations are an important aspect of disseminating and implementing interventions in real world settings (Cabassa & Baumann, 2013; Hodgson & Gitlin, 2021), so this limitation is not taken lightly. While this criterion seems appropriate for the focus of the present evidence map, it should not be taken to discount the value of rigorously adapting interventions. Relatedly there are several interventions which are well accepted as providing significant benefits in the community despite a lack of evidence base that would allow them to be included in the present study (e.g., the “Dealing with Dementia” intervention from the Rosalynn Carter Institute).

The present evidence map also did not evaluate the strength of evidence for any given outcome. This is noteworthy in the context of debate about how ready dementia care interventions are for implementation (Butler et al., 2021; National Academies of Sciences, Engineering, and Medicine, 2016). While this is a debate we are attentive to (Gaugler et al., 2021), it is outside the scope of the present focus on gaps and opportunities for impact within interventions that are currently being implemented. Still, to aid future researchers in weighing strength of evidence, we have incorporated strength of evidence of included interventions provided by Butler et al. (2021) into the airtable database. We believe this is part of a broader criticism (and also an opportunity) that is applicable to this evidence map: there are many ways to explore these data. For instance, interventions could be stratified in myriad ways (e.g., whether the intervention was implemented as tested, treating outcomes like social support or coping strategies as structure or process rather than outcomes in and of themselves, exploring how telephone/Internet settings were used instead of whether they were used). We are hopeful that many researchers find new and interesting ways to slice these data, indeed that is one major motivation for the airtable database of our interventions: to make it easier for them to do so.

While there is reason to believe the present review method may capture more interventions than traditional review methods, this is challenging to verify, and we are not aware of other efforts that have validated the method. This method was not cross-checked with a more traditional database search, which fails to erase the possibility that relevant studies were missed in the sources used. One suggestive (though not definitive) piece of evidence that the present method did seem well suited to the present aims is that no prior reviews captured all of the interventions included here. Despite this there appeared to be considerable saturation with most interventions being identified in multiple sources.

Finally, just because there is a gap in settings or outcomes does not inherently mean that that gap needs to be filled. We believe evidence presented above suggests that there is good reason to fill gaps in the outcomes found to be understudied. But the evidence that interventions should increasingly be employed in a wider variety of settings is reliant on somewhat less intuitive. Still, it does seem likely that there are hospital/medical center personnel who have seen first-hand the challenges that CPs face and want to do something to benefit them. While they may be able to select from interventions that have, as yet, no efforts toward implementation, this is a considerable undertaking. Filling this gap may have knock-on effects wherein hospitals/medical centers with fewer resources (whether in time, personnel, or money) are able to adapt and implement efficacious interventions in their own settings after the initial implementation work has been undertaken by hospitals/medical centers with greater resources.

Conclusion

This evidence map presents several gaps among dementia CP interventions that are being implemented. Among the largest gaps are a lack of interventions implemented in real world situations that span multiple settings (e.g., combining Home, Hospital, and Community in a single intervention) or take place in hospitals/medical centers. Perhaps more immediately impactful, though, is the undermeasurement of beliefs, coping strategies, and resources, which are intuitively important directly, indirectly, and have been identified as some elements of core outcomes agreed upon as of considerable importance by PLWD, care partners, health and social care professionals, researchers, and policymakers. Finally, this evidence map suggests that a gap remains in assessment of outcomes for both PLWD and their CPs, despite decades of theory and evidence that outcomes for one member of the dyad are likely to impact outcomes of the other.

Supplemental Material

Supplemental Material - Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities

Supplemental Material for Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities by Zachary G. Baker, Maria Dellapina, Allison M. Gustavson, Justine S. Sefcik, Sokha Koeuth, Joseph E. Gaugler, Kimberly Van Haitsma, and Laura N. Gitlin in Journal of Applied Gerontology

Footnotes

Acknowledgments

In addition to the listed authors, who are members of the NIA IMPACT Collaboratory Implementation Core (IC), we wish to acknowledge IC members who critically reviewed the manuscript and provided feedback on interventions that had not previously been identified. We would also like to thank Katie Maslow for her consultation regarding the Best Practice Caregiving Website. We also want to thank Joahana Segundo for her contributions in deriving estimates of quality from included interventions. Portions of these findings were presented at the annual meeting of the NIA IMPACT Collaboratory by the first, second, and senior authors. All authors contributed to the ideas behind this manuscript, have reviewed and edited text, and have engaged in discussions of interpretation for the findings. ZGB and MD held primary responsibility for drafting the manuscript. MD held primary responsibility for data capture, storage, and organization. Researchers using our publicly available Airtable database () are welcome to consult with us but are not required to offer co-authorship for any usage of this information. We request that they cite the present manuscript in resulting publications.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the National Institute on Aging (NIA) of the National Institutes of Health (NIH) under Award Number U54AG063546, which funds NIA Imbedded Pragmatic Alzheimer’s and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). This work was also supported by the NIA of the National Institutes of Health under award number K99/R00 AG073463, R00AG073463; the National Institute of Nursing Research of the National Institutes of Health under award number [K23 NR018673]; the Robert L. Kane Endowed Chair in Long-Term Care and Aging; the Veterans Health Administration Office of Academic Affiliations Advanced Fellowship in Clinical and Health Services Research (TPH 67-000) [AMG]; the Agency for Healthcare Research and Quality (AHRQ) and Patient-Centered Outcomes Research Institute (PCORI), grant K12HS026379 and the NIH’s National Center for Advancing Translational Sciences, grant KL2TR002492; and the Minneapolis Center of Innovation, Center for Care Delivery and Outcomes Research (CIN 13–406) [AMG]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, Department of Veterans Affairs, or the United States Government, AHRQ, PCORI, or Minnesota Learning Health System Mentored Career Development Program (MN-LHS).

ORCID iDs

Zachary G. Baker

Justine S. Sefcik

Supplemental Material

Supplemental material for this article is available online.

Notes

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