Programmatic research outcomes used to establish the evidence‐base of dementia caregiving support programs: An analysis of Best Programs for Caregiving

Abstract

INTRODUCTION

A substantial number of evidence‐based dementia caregiving support programs positively impact family and friend caregivers. Researchers and service organizations have successfully translated and delivered a subset of these programs to caregivers and are included in Best Programs for Caregiving (BPC). This investigation examined the programmatic caregiver research outcomes reported in peer‐reviewed articles of BPC programs to understand how programs impact caregivers in the community and identify underrepresented outcomes.

METHODS

Peer‐reviewed, published research articles that (1) reported at least one dementia caregiver outcome, and (2) used a controlled trial or pre/posttest study design were abstracted from the BPC database. Across 45 evidence‐based programs in BPC, 128 articles met inclusion criteria for data coding and descriptive analysis. Research outcomes (e.g., stress, depressive symptoms), efficacy findings (e.g., beneficial, no effect), and the type of study design used (e.g., pre/posttest, treatment/control) were coded from each article.

RESULTS

Twelve programmatic outcomes were identified focusing on Caregiver Well‐Being and Caregiver Support. Caregiver Well‐Being outcomes were frequently assessed by BPC programs, including symptoms of depression, reported in 81 (63.3%) articles, and care‐related stress, strain, and/or burden, reported in 75 (58.6%) articles. By comparison, Caregiver Support outcomes were infrequently measured including quantity of family/friend support, reported in 17 (13.3%) articles, and quantity of community service use, reported in 13 (10.2%) articles. High percentages of beneficial findings were reported for both Caregiver Well‐Being and Caregiver Support outcomes. Articles reported beneficial findings using pre/posttest and treatment/control group designs similarly across caregiver outcomes.

DISCUSSION

The majority of BPC programs positively impact caregiver well‐being outcomes but limited attention is given to other person‐centered and strength‐based research outcomes including supports for caregivers, unmet needs, and positive aspects of caregiving. Additional research is needed by both established and new non‐pharmacological caregiving interventions to target and evaluate the impact of these underrepresented outcomes.

Highlights

• Best Programs for Caregiving is an online database of dementia caregiving programs.

• BPC programs mainly target deficit‐focused, medical‐based, well‐being outcomes.

• Few BPC programs target positive aspects of caregiving and service use outcomes.

• More research is needed to evaluate underrepresented caregiver outcomes.

1. INTRODUCTION

A major advancement in the field of dementia care and services is the development and evaluation of more than 200 non‐pharmacological support programs that benefit family and friend caregivers (caregivers) of people living with dementia. ¹ , ² , ³ These programs have a strong research base, with well‐documented efficacy findings across systematic reviews and meta‐analyses demonstrating positive impacts on caregivers’ well‐being, care‐related stress, and feelings of burden. ⁴ , ⁵ , ⁶ Despite successful development of non‐pharmacological interventions, only a select subset of these programs have been translated into the “real‐world” and are being delivered as a regular service by healthcare and community organizations. ⁷ To date, a limited number of evaluations have investigated this subset of interventions or documented the targeted programmatic caregiver outcomes (e.g., depression, burden, service use) that demonstrated beneficial findings. ² , ³ , ⁸ , ⁹ , ¹⁰ , ¹¹ , ¹²

As the awareness and availability of caregiving support programs increases, ¹³ , ¹⁴ it is important to understand how the current state of evidence‐based programs impacts caregivers and systematically addresses caregiving needs. Family members and friends report needing assistance with a variety of medical and non‐medical problems related to their caregiving role and responsibilities, including emotionally and physically coping with dementia symptoms and care; finding and accessing support services; dealing with financial and legal issues; and managing the person's co‐existing medical conditions. ¹⁵ , ¹⁶ But do the caregiving support programs currently delivered by service providers in the community have an impact on these needs? Without an investigation examining the subset of interventions that service organizations are providing, it is unclear (1) how the non‐pharmacological interventions being delivered today are positively impacting caregivers in the community, and (2) if there are gaps among underrepresented caregiving outcomes that require further development and testing to effectively serve caregivers.

Data collected and displayed on Best Programs for Caregiving (bpc.caregiver.org) is an opportunity to begin answering these questions. Best Programs for Caregiving (BPC) is a free, online compendium of information on 45 available, evidence‐based dementia caregiving programs that have been found to be effective in published research and feasible for delivery by healthcare and community organizations. BPC was originally developed to address two key barriers to program adoption: (1) a lack of awareness by healthcare and community organizations about available dementia caregiving programs, and (2) the lack of easily accessible resources that can help service providers identify and implement programs that match their organization's needs. ³ , ⁷

Programs listed on the BPC website meet the resource's three eligibility criteria: (1) completed one or more trial(s) or pre/posttest studies in the United States with a sample of at least 50% of caregivers assisting someone with dementia that demonstrated a statistically significant, beneficial outcome for dementia caregivers; (2) at least one implementation where the program was delivered by a healthcare or community organization as a regularly offered service; and (3) permission to license or implement the program is available to interested organizations. ³ For each of the 45 programs, BPC describes programs’ research methodologies and outcomes from published research articles, operational program features, and implementation experiences of adopting service organizations. The database is updated regularly, incorporating changes made to programs overtime and adding new caregiving programs that meet BPC eligibility criteria. BPC has been recognized and recommended for use by leading organizations in the field. ¹⁷ , ¹⁸ , ¹⁹

A closer look into the strengths and limitations of BPC programs can further our understanding of how feasible, non‐pharmacological caregiving interventions are impacting caregivers in the community and help highlight potential gaps among underrepresented caregiving outcomes that require further development and testing to effectively serve caregivers and advance the field of dementia care and services.

The current investigation utilized the BPC database to abstract, analyze, and describe the programmatic research outcomes reported in published, peer‐reviewed research articles of programs included in BPC. Specifically, this included the type and frequency of caregiver outcomes reported in each research article (e.g., symptoms of depression, strain), the associated efficacy findings (i.e., beneficial effect, no effect, or adverse effect), and the type of study design that was used to test the effect (i.e., pre/posttest, treatment/control). Stress and coping theoretical frameworks have largely been used to develop and evaluate non‐pharmacological caregiving interventions. ¹¹ , ²⁰ As such, the Stress Process Model ²¹ guided this investigation's coding scheme.

2. METHODS

2.1. Database extraction

Best Programs for Caregiving was the search source to identify eligible published peer‐reviewed journal articles for this investigation. Data for BPC were originally collected during the development of the BPC Professional Version which launched in early 2020 and reflects information from the 45 evidence‐based dementia caregiving support programs included in the resource at that time. As part of the original data collection process, peer‐reviewed published research articles were identified from bibliographies collected from the individual or representative who developed each caregiving support program. For an in‐depth review of programs included in the BPC database and data collection procedures, refer to Maslow et al. ³ or bpc.caregiver.org.

2.2. Peer‐reviewed article inclusion and exclusion criteria

Across the 45 programs in BPC, 231 peer‐reviewed published research articles were assessed for eligibility (Figure 1). Although programs included in BPC have published research articles using various methodologies and target samples, BPC eligibility criteria require programs to demonstrate a beneficial outcome for dementia caregivers in a trial(s) or pre/posttest study(ies). Therefore, published research articles were included in the current investigation's analyses if the article: (1) reported at least one caregiver outcome, and (2) used a pre/posttest or treatment/control group study design. Out of the 231 eligible published research articles, 99 were excluded from analyses for not reporting a caregiver outcome (e.g., protocol paper, outcomes focused only on the person living with dementia) and an additional 4 articles were excluded for not using a pre/posttest or treatment/control study design (e.g., cross‐sectional study, case study). This left a total of 128 published research articles for data coding and descriptive analysis.

FIGURE 1.

Diagram of inclusion and exclusion criteria for published peer‐reviewed research articles.

RESEARCH‐IN‐CONTEXT

1. Systematic review: The authors reviewed the literature using traditional sources (e.g., Google Scholar, PsychINFO). Only a handful of previous studies have attempted to analyze translated evidence‐based caregiving programs. When appropriate, these studies are cited.

2. Interpretation: Findings identify several understudied programmatic outcomes that are absent from existing programs’ intervention goal(s) and/or research evaluations.

3. Future directions: This investigation highlights critical gaps in programmatic research outcomes that are targeted and assessed by existing evidence‐based dementia caregiving support programs. Further evaluation of these programs, and development of new programs, is needed to adequately support the comprehensive needs of dementia caregivers.

2.3. Data coding

Information from 128 full‐text, published research articles were abstracted and coded by two research analysts and stored in Microsoft Excel. For each published research article, the following data elements were abstracted: (1) programmatic outcome(s) assessed (e.g., symptoms of depression, burden), (2) reported efficacy finding per outcome (i.e., beneficial effect, no effect, or adverse effect), and (3) the type of study design used to test the effect (e.g., pre/posttest, treatment/control). Once abstracted, one of the two research analysts independently coded each data element. Uncertainty regarding the coding of a data element was resolved through an iterative process with both research analysts and research team leaders and documented in a decision log.

The coding of programmatic research outcomes for the current investigation was guided by the Stress Process Model ²¹ and categorized into the following five domains that best represent the majority of caregiver outcomes reported in published articles: (1) Caregiver Well‐Being, (2) Caregiver Support, (3) Person Living with Dementia Well‐Being, (4) Support for the Person Living with Dementia, and (5) Person Living with Dementia Service Utilization and Cost Benefits. The scope of the current investigation only focused on programmatic research outcomes that were categorized into the two caregiver domains (i.e., Caregiver Well‐Being and Caregiver Support). Persons living with dementia‐related outcomes are not presented in the current report.

Efficacy findings were coded into three potential categories for each caregiver outcome, including beneficial finding (e.g., significant improvement in depressive symptoms), no effect (e.g., no significant impact on depressive symptoms), or adverse effect (e.g., worsening depressive symptoms). Efficacy categorization was based on the original research article's conclusion for each reported outcome. For instance, if an article used a p‐value of less than or equal to 0.05 as the determination of a significant effect and another article used a p‐value of less than or equal to 0.01, but both articles considered their respective results to be “beneficial,” the current investigation coded each of these outcomes as a beneficial finding. This same method was used to code no effect and adverse effects.

The type of study design used to test the research outcome effect was the third data element coded from published research articles. Study designs were coded as either pre/posttest or treatment/control with treatment/control referring to randomization procedures for group allocation. Once all 128 research articles were successfully coded, Microsoft Excel data were exported into an SPSS statistical software file (Version 29) and analyzed using descriptive statistics.

3. RESULTS

Across the 128 published research articles that met inclusion criteria, publication dates ranged from the year 1995 to 2020, with 82.1% of articles (n = 105) published in the 15 years prior to 2020 (2005–2020). All published article citations can be found on the BPC website. Among the 45 BPC programs, each program had an average of at least two published research articles with outcomes reported (M = 2.8, Mdn = 2), ranging anywhere from 1 to 14 articles published per program.

A total of 12 different programmatic caregiver‐related outcomes were identified and coded across the 128 research articles. These 12 outcomes were categorized into Caregiver Well‐Being (n = 7) or Caregiver Support (n = 5) domains. The seven outcomes categorized into Caregiver Well‐Being include: (1) symptoms of depression; (2) care‐related stress, strain, and/or burden; (3) efficacy, skills, and/or confidence in caregiving; (4) health, morbidity, and/or mortality; (5) quality of life or life satisfaction; (6) quality of the relationship with the person living with dementia; and (7) unmet need. The five outcomes categorized into Caregiver Support include: (1) the quantity of family/friend support; (2) the quality of family/friend support; (3) the quantity of support, information, and community service use; (4) the quality of support, information, and community service use; and (5) respite or break from care.

A total of 335 efficacy findings were coded across the 128 research articles for outcomes related to Caregiver Well‐Being and Caregiver Support, including 284 beneficial findings, 51 no effect findings, and 0 adverse effect findings. Of the 284 coded beneficial efficacy findings, 57.4% (n = 163) used a pre/posttest design and 42.6% (n = 121) used a treatment/control design.

Frequencies of each outcome assessed (Table 1), the associated beneficial findings (Table 2), and the type of study design used (Table 3) are described in greater detail below. As mentioned earlier, no published articles reported an adverse finding for any of the 12 caregiver outcomes. The percentages displayed in Tables 2 and 3 were calculated based on the total number of articles that reported a beneficial finding. Although not explicitly displayed in these tables, the remaining percentage represents the number of articles that found no effect on each outcome.

TABLE 1.

Frequency of assessed caregiver outcomes reported in published articles of BPC programs.

Outcome	Articles n (%)
Caregiver well‐being
Symptoms of depression	81 (63.3%)
Care‐related stress / strain / burden	75 (58.6%)
Efficacy / skills / confidence in caregiving	60 (46.9%)
Health / morbidity / mortality	32 (25.0%)
Quality of life / life satisfaction	20 (15.6%)
Quality of relationship with PLWDf	15 (11.7%)
Unmet need	5 (3.9%)
Caregiver support
Family / friend support—quantity	17 (13.3%)
Support, information, community service use—quantity	13 (10.2%)
Family / friend support—quality	12 (9.4%)
Support, information, community service use—quality	4 (3.1%)
Respite or break from care	1 (0.8%)

Note: N = 128.

Abbreviations: BPC, Best Programs for Caregiving; PLWD, person living with dementia.

TABLE 2.

Frequency of beneficial caregiver findings reported in published articles of BPC programs.

Outcome	Beneficial findings n (%) a
Caregiver well‐being
Symptoms of depression	67 (82.7%)
Care‐related stress / strain/ burden	67 (89.3%)
Efficacy / skills / confidence in caregiving	54 (90.0%)
Health / morbidity / mortality	26 (81.3%)
Quality of life / life satisfaction	16 (80.0%)
Quality of relationship with PLWD	9 (60.0%)
Unmet need	5 (100.0%)
Caregiver support
Family / friend support—quantity	15 (88.2%)
Support, information, community service use—quantity	11 (84.6%)
Family / friend support—quality	9 (75.0%)
Support, Information, community service use—quality	4 (100.0%)
Respite or break from care	1 (100.0%)

Abbreviations: BPC, Best Programs for Caregiving; PLWD, person living with dementia.

^a Percentages are calculated from the total number of published articles reported in Table 1 for each outcome.

TABLE 3.

Frequency of study design type used to test a beneficial caregiver outcome reported in published articles of BPC programs.

Outcome	Pre/Posttest (n, %) a	Treatment/control (n, %) a
Caregiver well‐being
Symptoms of depression	38 (56.7%)	29 (43.3%)
Care‐related stress / strain / Burden	35 (52.2%)	32 (47.8%)
Efficacy / skills / confidence in caregiving	34 (63.0%)	20 (37.0%)
Health / morbidity / mortality	16 (61.5%)	10 (38.5%)
Quality of life / life satisfaction	10 (62.5%)	6 (37.5%)
Quality of relationship with PLWD	1 (11.1%)	8 (88.9%)
Unmet need	3 (60.0%)	2 (40.0%)
Caregiver support
Family / friend support—quantity	9 (60.0%)	6 (40.0%)
Support, information, community service use—quantity	6 (32.7%)	5 (45.5%)
Family / friend support—quality	8 (88.9%)	1 (11.1%)
Support, information, community service use—quality	2 (50.0%)	2 (50.0%)
Respite or break from care	1 (100.0%)	0 (0.0%)

Abbreviations: BPC, best programs for caregiving; PLWD, person living with dementia.

^a Percentages are calculated from the total number of published articles that reported a beneficial finding in Table 2 for each outcome.

3.1. Caregiver well‐being outcomes

Seven of the 12 programmatic outcomes identified were categorized into the Caregiver Well‐Being domain. Out of 128 published articles, the most frequently assessed Caregiver Well‐Being outcome was symptoms of depression, reported in 81 (63.3%) articles (Table 1). Care‐related stress, strain, and/or burden outcomes were assessed in 75 (58.6%) articles, and caregiver efficacy, skills, and/or confidence in caregiving outcomes were assessed in 60 (46.9%) articles. Other Caregiver Well‐Being outcomes that were evaluated less often included caregiver health, morbidity, and/or mortality in 32 (25.0%) published articles; quality of life or life satisfaction in 20 (15.6%) articles; quality of the relationship with the person living with dementia in 15 (11.7%) articles; and unmet need in only 5 (3.9%) published articles.

All seven outcomes in the Caregiver Well‐Being domain demonstrated a high percentage of published articles reporting beneficial efficacy findings (Table 2). Of the 81 published articles that assessed caregiver symptoms of depression, 67 (82.7%) reported a beneficial finding for this outcome (i.e., significant improvement in depressive symptoms). Other Caregiver Well‐Being outcomes followed this trend, including care‐related stress, strain, and/or burden reported as a beneficial outcome in 67 out of the 75 (89.3%) published articles; efficacy, skills, and/or confidence in caregiving reported as beneficial outcomes in 54 out of 60 (90.0%) articles; and 26 out of 32 (81.3%) published articles reported beneficial findings for health, morbidity, and/or mortality outcomes.

Table 3 displays the frequency of beneficial findings for each outcome broken down by the type of study design that was used, as reported by the published article. The frequency of study design used was split fairly equally between pre/posttest and treatment/control for published articles assessing Caregiver Well‐Being outcomes with a few noted exceptions. Of the nine research articles that reported a beneficial finding for the outcome quality of relationship between the caregiver and the person living with dementia, eight (88.9%) of the beneficial findings were reported using a treatment/control study design compared to one (11.1%) published article using a pre/posttest study design. Efficacy, skills, and/or confidence in caregiving are additional outcomes displaying variability in the type of study design used to evaluate efficacy. Of the 54 articles that reported a beneficial finding for these outcomes, 34 (63.0%) articles reported using a pre/posttest study design compared to 20 (37.0%) articles reporting a treatment/control study design.

3.2. Caregiver support outcomes

Five of the 12 programmatic outcomes identified were categorized into the Caregiver Support domain. Published articles either examined the quality of support (e.g., quality of care provided) or the quantity of support (e.g., total number of family and friend helpers) and are labeled accordingly. Out of 128 published research articles, quantity of family and/or friend support was the most frequently assessed Caregiver Support outcome in 17 (13.3%) published articles (Table 1), whereas only 4 articles (3.1%) reported assessing the quality of family and/or friend support. Interestingly, although quantity of support, information, and community service use was used as an outcome in 13 (10.2%) articles, quality of support, information, and community service use was only used as an outcome in 4 (3.1%) articles. The outcome of respite (or break) from care was assessed in 1 (0.8%) of the 128 published research articles.

Though infrequently measured, among the articles that did report assessing Caregiver Support outcomes, many reported beneficial findings (Table 2). Fifteen of the 17 (88.2%) articles assessing quantity of family and/or friend support as an outcome reported a beneficial finding (i.e., improvement in the number of family and/or friend supports). Similarly, 11 out of 13 (84.6%) articles reported a beneficial finding for quantity of support, information, and community service use outcomes (i.e., improvement in the number of support, information, and community services used). Articles that assessed the quality of support, information, and community service use (n = 4) as well as respite (or break) from care (n = 1) outcomes reported beneficial findings in all articles.

Articles reported beneficial findings for Caregiver Support outcomes using both a pre/posttest and treatment/control study designs (Table 3). One exception is the quality of family and/or friend support outcome, which was reported as beneficial using a pre/posttest study design in eight out of nine (88.9%) published articles.

4. DISCUSSION

The BPC database is a novel resource that allows for targeted analysis of evidence‐based caregiving support programs that healthcare and community organizations have and/or are currently implementing with family and friend caregivers. Therefore, the current investigation utilized the BPC database as a method to analyze and describe the totality of programmatic research outcomes across 45 evidence‐based dementia caregiving interventions. This enabled a comprehensive overview of the proportion of efficacious findings across various caregiving outcome domains as supported by the Stress Process Model.

Findings from the current investigation suggest there is a heavy focus on improving caregivers’ depressive symptomologies, alleviating feelings of burden and stress, and increasing confidence in the caregiving role. The majority of articles analyzed found beneficial findings for such caregiving outcomes and many utilized a pre/posttest study design.

These results align with previous reports ⁴ , ⁶ , ⁹ , ¹¹ , ²² identifying an overreliance on programmatic outcomes that target caregiver well‐being, specifically outcomes targeting symptom reduction. Although it is necessary to have programs that can effectively target and improve specific components of caregiver's well‐being, a heavy focus on deficit‐based and medicalized outcomes has resulted in limited study of other important caregiving outcomes. ¹¹ , ²⁰ , ²³ This can result in an incomplete picture of caregivers’ lived experiences ⁵ , ²² and perpetuate negative stereotypes and disease stigma for people living with dementia and their caregivers. ²² , ²⁴

In response to this issue, researchers and advocates have called for increased recognition of non‐pharmacological interventions and research outcomes that reflect person‐centered and strength‐based approaches to encourage caregivers’ engagement and contribution as active members of the dementia care team. ⁴ , ⁵ , ¹¹ , ²² , ²⁵ , ²⁶ Gaugler and colleagues ²² suggest we prioritize frameworks that emphasize resilience, positive aspects of caregiving across the disease continuum, and adaptability. By doing so, we are able to incorporate ‘holistic outcome measures that take on a person‐centered, strength‐based approach to reframe the negative, deficit‐based narrative that has shaped dementia care for so long’. ²²

In recent years, the number of studies measuring positive aspects of caregiving, caregivers’ quality of life, or caregiver self‐efficacy have increased. ²⁶ , ²⁷ , ²⁸ However, as noted in the current investigation, less than half of all articles examined measured outcomes related to a caregiver's efficacy or feelings of confidence, and even less examined a caregiver's quality of life or life satisfaction. There is still much to be done to explore the relationships between the positive aspects of dementia caregiving and typical stressors or burdens of caregiving, both as influencing or explanatory factors as well as potential programmatic outcomes that can be improved through effective intervention.

Additionally, the lack of attention given by non‐pharmacological caregiving programs on Caregiver Support outcomes has been noted by others ⁴ , ⁹ , ²⁹ and was found to be true among BPC programs as well. Some BPC programs did measure Caregiver Support. However, preference was often given to the quantity of an outcome, such as the total number of family members and friends that could assist a caregiver with their care responsibilities, as opposed to the quality of the informal help a person was receiving. This was also true for outcomes assessing caregivers’ use of support, information, and community services. The total number or quantity of these services and resources was utilized more often than the quality of support services. Increasing the quantity of caregivers’ informal (e.g., other family members and friends) and formal (e.g., medical, home‐ and community‐based) support networks and ensuring that these supports provide quality dementia care that effectively meet caregivers’ unique needs are equally important components of dementia care. ²⁹ , ³⁰ Other caregiver‐related outcomes including unmet need, ³¹ respite, ³² financial and physical burdens of providing care, ³³ and social isolation ³⁴ are highlighted by this investigation as understudied or absent altogether from caregiving support programs included in BPC.

The findings from this investigation highlight two important next steps for dementia caregiving research. The first is to expand the research outcomes evaluated and published by existing evidence‐based caregiving support programs. Many existing programs may already target one or more of the understudied care‐related outcomes identified by this investigation through various mechanisms such as educational materials, caregiver training, or care coordination. Despite this, it is clear that few intentionally measure and evaluate the program's ability to impact these outcomes. In these instances, there is a need for existing programs to assess different caregiving outcomes as new constructs conceptualized within the programs’ existing theoretical frameworks.

The second is the need for new non‐pharmacological interventions to be developed that specifically target and evaluate other person‐centered outcomes, considering the appropriateness of alternative conceptual models. When outcome measurements are specifically tailored to the goals of the intervention and developed with caregivers’ backgrounds in mind (e.g., cultural considerations), this will not only increase measurable effects, but also expand our understanding of what interventions are beneficial across the disease continuum and for which caregiving communities. Consistent with this idea, Gallagher‐Thompson and colleagues ³⁰ recently put forth a call to action for future dementia caregiving interventions to consider frameworks and outcomes related to diversity and culture (e.g., care expectations, how dementia is understood, cultural values), needs assessments for both the caregiver and person living with dementia (e.g., identify both risks and strengths of care dyads), and to take on a dyadic, longitudinal perspective to understand the interrelatedness among intervention outcomes.

4.1. Limitations

A few limitations of the current investigation need to be taken into consideration when interpreting this report's findings. First, reported findings only represent data abstracted and coded from the published research articles of the 45 programs listed on BPC. The authors feel that examining BPC programs is a strong methodology for targeted analysis of translated evidence‐based caregiving programs. However, it is recognized that the totality of all non‐pharmacological interventions that have been developed and tested for dementia caregivers are not included in this report, including interventions developed and tested outside of the U.S. Second, this investigation's coding scheme of efficacy findings does not represent the statistical rigor of a meta‐analysis under Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines. ³⁵ Efficacy findings were coded based on the published research article's report of each impacted outcome. Other PRISMA guidelines, such as search strategy, selection process, eligible criteria, and data items were included within this investigation to ensure transparency and replicability of study findings. ³⁵ Additionally, the instruments or scales used to measure programmatic research outcomes were not captured by the current investigation. Others have begun making strides in describing the breadth and depth of measures used to represent dementia caregiving outcomes. ⁹ , ³⁶

5. CONCLUSION

As the number of people living with dementia continues to rise, more family members and friends will enter the caregiving role. The information included in BPC is a chance to examine and inform the current state of evidence‐based supports and services for caregivers. By describing programmatic outcomes impacted by available evidence‐based programs we are better equipped to understand present gaps and acknowledge the need for further development and translation of non‐pharmacological interventions to adequately address all aspects of the caregiving experience. Importantly, this should include expanding the assessment of understudied research outcomes measured by established programs and the development of new non‐pharmacological interventions that intentionally target additional influencing factors and outcomes with appropriate and inclusive theoretical frameworks.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest. Author disclosures are available in the supporting information.

Supporting information

Supporting information

Minyo MJ, Powers SM, Bass DM, et al. Programmatic research outcomes used to establish the evidence‐base of dementia caregiving support programs: An analysis of Best Programs for Caregiving . Alzheimer's Dement. 2025;11:e70092. 10.1002/trc2.70092