A state-of-the-art narrative review of peer support for family caregivers of people with dementia: from in-person to digital delivery
Introduction
As of 2009, one in four adults in the U.S. reported being a caregiver to someone in their life (1). The financial benefits of family caregiving to society are enormous: annually, caregivers provide approximately $305 billion of unpaid support to people living with dementia (2). As the population of older adults continues to grow, this cost is expected to grow as high as $1 trillion (2). With the increasing prevalence of people diagnosed with dementia, the demand for family caregivers will increase concurrently, and family members will likely face greater challenges caring for their relatives.
Despite the benefits of caregiving for the person living with dementia and to society, the Centers for Disease Control and Prevention found that over 50% of caregivers’ self-reported physical and mental declines due to caregiving (1). Family caregivers of people with dementia experience high levels of stress (3), anxiety (4), and depression (5). Approximately one in three family caregivers endorse symptoms of clinically significant depression (6). Caregivers of people living with cognitive impairment have a greater than threefold increased risk of suicidal ideation (7), an important risk factor for death by suicide. Research indicates that the physical health of caregivers is also negatively impacted, with older caregivers, caregivers supporting care recipients with higher levels of behavioral problems, caregivers with increased frequency and intensity of caregiving, and caregivers with lower socioeconomic status, showing greater declines in physical health (8,9). These declines are further moderated by factors such as the caregiver’s sex and the specific health category affected, with stronger negative health effects observed in stress hormones, antibodies, and overall reported health (9). Innovative service delivery models, such as those that may facilitate peer support, are needed to support this vulnerable population of caregivers.
Peer support is broadly defined as social-emotional support, frequently coupled with instrumental support, that is mutually offered or provided by persons who share similar experiences. This support aims to bring about a desired social or personal change through the process of offering “support, companionship, empathy, sharing, and assistance” (10). Peer support interventions have been developed for almost every area of healthcare. For example, peer support services exist for those with neurological disorders such as dementia (11) and stroke (12), mental health disorders such as depression and schizophrenia (13), cancer (14), diabetes (15), human immunodeficiency virus (HIV) (16), and other infectious diseases, rare diseases, and more.
Peer support has also expanded since the late 1970s to support family caregivers of people with neurological disorders (17). Family caregivers of people with dementia have been found to benefit from several aspects of peer support, including help with problem-solving, information sharing, encouragement, and feedback (18). Peer support continues growing in popularity, and has become an essential service to many family caregivers of people with dementia during their caregiving process (19).
Peer support intervention delivery modalities are manifold (Table 1). In some interventions, group leaders are experts, and group members who are all caregivers provide mutual peer support. In other interventions, group leaders and members are all peers. Peer support interventions often occur in the context of multicomponent interventions but can also be delivered as standalone offerings. A group environment is not required; several peer support interventions pair a trained peer supporter with a caregiver 1:1. Peer support interventions may be delivered via various platforms, including in person, telephone, virtual/online, and even text chat. The coronavirus disease 2019 (COVID-19) pandemic significantly accelerated the transition to digital delivery of peer support interventions, leading to an increase in remote offerings (20,21). This shift was largely driven by the need for continued care during social distancing mandates and digital peer support interventions being increasingly acceptable among insurers across the U.S. The rapid uptake of these digital modalities has informed the development of nascent platforms that better improve digital peer support, as well as provided motivation for more rigorous testing of these interventions through randomized controlled trials (20-22).
Table 1
Leaders | Recipients/supporters | Format | Delivery |
---|---|---|---|
Professionals | Peers | Group—standalone intervention | In person, telephone audio, virtual video, text chat (synchronous and asynchronous) |
Peers | Group—multicomponent intervention | ||
Co-led by peers | Peers | Group—standalone intervention | |
Peers | 1:1—standalone intervention |
This narrative review examines peer support services for caregivers of people with dementia. It features developments in the research literature on peer support services, specifically for family caregivers of people with dementia. The research questions that guided this narrative review included: (I) what mechanisms might explain the benefits of peer support? (II) To what extent is peer-reviewed literature available on the efficacy of peer support for family caregivers of people with dementia? (III) How and to what extent do family caregivers benefit from peer support? (IV) What delivery modalities have evidence-based support, and is there a role for mHealth digital delivery? We present this article in accordance with the Narrative Review reporting checklist (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-19/rc).
Methods
To identify relevant literature, we conducted a search across Google Scholar and PubMed. The search strategy employed a combination of the following search terms: “caregiver” AND “peer support” AND “dementia” AND (“digital” OR “smartphone” OR “online”). Studies published in English between January 2007 and January 2024 were included, with 2007 selected as the starting point to coincide with the release of the first iPhone. The full-text review process was guided by the expertise of two authors, who decided which were the most influential and critical studies to be included. Studies were selected for inclusion based on their relevancy to one or more of our four guiding questions. During the full-text review, if discrepancies arose between the two reviewers regarding the inclusion of specific studies, a consensus approach was employed to resolve these differences. The inclusion of studies was iterative, involving repeated rounds of discussion and evaluation until both expert researchers reached agreement on all the studies to be included in the review. Data charting of selected studies and the synthesis of results were also guided by the research questions, following an iterative approach. This allowed for adjustments as new themes and concepts emerged, based on consensus amongst the two expert authors. The search strategy is summarized in Table 2.
Table 2
Items | Specification |
---|---|
Date of search | March 15th 2024 |
Database and other sources searched | Google Scholar, PubMed |
Search terms used | “Caregiver” AND “peer support” AND “dementia” AND (“digital” OR “smartphone” OR “online”) |
Timeframe | JJanuary 1st 2007–January 1st 2024 |
Inclusion criteria | Only papers written in English and published between the year 2007 and 2024 were considered for inclusion |
Selection process | All work was done by the authors |
Findings
Theories on peer support mechanisms
Peer support is grounded in six social and behavioral theories: social support, experiential knowledge, helper therapy principle, social learning theory, social comparison theory, and self-determination theory (23). Table 3 defines these theories and how they apply to peer support.
Table 3
Theory | Definition | Relationship to peer support for dementia caregivers |
---|---|---|
Social support theory | Focuses on mutual support, where the intent includes the benefit of both parties (23) | Peer supports benefit from shared companionship and social connection. Support is enhanced by authenticity of assistance from someone who shares a similar lived experience (24) |
Experiential knowledge | People learn through others’ personal experiences | Through the mentorship of someone with lived experience (peer support), the individual learns what it is like to manage a similar situation. This mentor assists in accessing resources and skill building (23) |
Helper therapy principle | Individuals help themselves when they help others through shared dialogue and mentoring (25) | Peer supporters assist others in their caregiving journey while also allowing others to help them on their own caregiving experience |
Social learning theory | Adoption of healthy behaviors by observing and trying to replicate the actions of others (26) | Individuals may adopt healthy behaviors by observing and trying to replicate the actions of peer-support specialists that led to a successful road to recovery (27) |
Social comparison theory | Comparing yourself to others, which increases motivation and hope for you to end up in similar situations as the people around (28) | Peer support encourages an upward comparison, motivating individuals to engage in activities to meet their goals. By comparing themselves to their peer support, it gives individuals hope that they have a positive future ahead of them. These comparisons may not be possible with lay providers and traditional providers if they do not have experiences with similar illness or do not disclose their experiences as a person with a lived experience (27) |
Self-determination theory | Creating the right conditions for others to deepen their sense of self-determination and make positive choices for themselves. Creates a safe space to establish control of one’s own life (29) | Peer support helps create the right conditions for others to deepen their sense of self-determination by demonstrating choices others have made in similar circumstances (29) |
Understanding the mechanisms behind peer support specifically as it relates to family dementia caregivers requires a nuanced approach that integrates multiple theoretical perspectives. There are unique challenges, including emotional strain, physical exhaustion, and social isolation. Peer support offers a valuable resource for alleviating some of these challenges by connecting caregivers with others who share similar experiences. However, the effectiveness of these interventions can vary depending on how these interactions are structured and understood.
In the context of dementia caregiving, social support theory might be observed when two caregivers share strategies to manage challenging behaviors like aggression or wandering. However, the theory may fall short when the caregiving challenge is overwhelming for one party, making it difficult for both individuals to provide and receive support equally. For instance, if one caregiver is significantly more stressed, they could lack the capacity to offer support. Nonetheless, research has shown that caregivers of people with dementia consistently report shared connection as one of the main benefits of peer support (18,30,31).
The transfer of experiential knowledge is an important benefit of caregiver peer support, as a peer supporter who has navigated similar challenges can provide educational insights, such as navigating healthcare systems or learning how to coordinate in-home services (32). However, this theory assumes that observed behaviors are replicable, which may not always be the case. For example, a peer supporter might teach a caregiver a specific communication technique they used with their own dementia patient, but that technique may not work with the loved one of the family caregivers due to differences in cognitive or behavioral symptoms. Nonetheless, caregivers report that peer support groups often involve a sharing of “what had and had not worked for others”, with practical and emotional coping advice often being shared (33).
The helper therapy principle suggests that a caregiver might find purpose and reduce stress by supporting another. One flaw of this theory is that it may not adequately address situations where the caregiver’s own needs are unmet. For instance, helping others could lead to additional stress for a caregiver already overwhelmed by their responsibilities, who may potentially find it more draining than therapeutic to take on a supportive role.
Social learning theory indicates that caregivers might learn healthy behaviors or effective coping strategies by observing peers who have successfully managed difficult situations, such as watching a loved one decline. Similar to the experiential knowledge theory, it may be less applicable if observed behaviors are not replicable, which may be true given individual variability in caregivers and caregiving experiences. Nonetheless, caregivers of people with dementia often report having learned coping strategies from peer supporters, suggesting that peer supporters can find adaptable strategies that improve the caregiving experience (18).
Social comparison theory posits that a caregiver might feel inspired by seeing another who has managed to maintain a balanced life while caring for someone with dementia. However, this theory could also have negative effects. A caregiver struggling to manage stress might feel demoralized if they perceive others as coping better, potentially exacerbating their own mental health issues and resulting in feelings of inadequacy and guilt.
Finally, self-determination theory suggests that peer support might help caregivers feel more in control of their lives by providing information and strategies to make informed decisions. However, this theory may not fully account for external factors that limit a caregiver’s ability to exercise self-determination. Such factors may include financial constraints or the unpredictable nature of dementia’s progression. This may potentially result in hopelessness and reduced self-determination despite best efforts. Consistent with this hypothesis, caregivers who willingly and volitionally provide care often report better mental health, less stress, and greater life satisfaction (34). In contrast, caregivers who report feeling obligated to provide care tend to experience lower well-being and higher levels of exhaustion and depressive symptoms (34).
The mechanism by which family dementia caregivers are benefited from peer support is likely shaped by a combination of several theories discussed. Social support, social comparison, and helper therapy principle collectively contribute to the emotional and psychological benefits of peer support, providing caregivers with shared experiences and mutual aid. Meanwhile, social learning, experiential learning, and self-determination theories help explain how caregivers adopt effective coping strategies and learn how to manage their care recipients. A multifaceted approach, integrating elements from all these theories, may be necessary to effectively support caregivers in this context. Nonetheless, further confirmation through individual empirical studies is necessary to confirm the applicability of each of these mechanisms as it relates to peer support for informal caregivers of persons with dementia.
Efficacy and benefits of group peer support for informal caregivers of persons with dementia
Group peer support interventions are delivered in part or whole by and to people with similar lived experiences, and for informal caregivers of persons with dementia, have been organized by professionals and organizations (e.g., Alzheimer’s Association, 2023) and by caregivers themselves who self-organize. Conversations among family caregivers may include discussions of caregiver challenges and stressors, ways of coping and managing symptoms in the person with dementia, and aspects of their own personal lives and struggles. A goal is to offer authentic support to one another and reflect on shared experiences.
A systematic meta-analysis has been carried out to review and assess the effectiveness of support groups led by professionals for caregivers of people with dementia and to examine the impact of support group characteristics (35). This meta-analysis examined and published thirty quantitative journal articles between 1998 and 2009, a period during which most interventions were delivered in person. Outcomes included evidence for improvement in psychological well-being, depression, caregiver strain, and social outcomes, with small to moderate effect sizes (35). Characteristics associated with higher effect sizes included longer length of intervention (>8 weeks), longer duration of individual sessions, and smaller group sizes (~6–10 caregivers).
Illustrating the rapidly changing landscape of caregiver peer support group delivery, a scoping review of studies conducted between 2007 and 2017 identified 28 original studies, of which just over half were delivered in-person, and the rest were delivered by telephone or internet (36). Results indicated that the various delivery modalities of peer support groups all showed efficacy, whether in-person, telephonic, or online. Multi-component groups with at least some expert leadership and educational components were most frequently studied, aiming to improve caregiver skills and reduce symptoms related to caregiver stress.
A systematic review and meta-analysis examined internet-based supportive interventions for family caregivers of people with dementia and their efficacy on health outcomes (37). Seventeen randomized control trials were identified in this study. Results showed that internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits for care recipients (37).
Additionally, Hopwood et al. (38) studied internet-based interventions to support family caregivers of people with dementia. This review examined 40 different studies between the 1990s and April 2018. Interventions included contact with health or social care providers, peer-to-peer interaction, information gathering, decision support, and psychological support. Hopwood assembled 25 articles that included peer support components. While the studies were found to be of low methodological rigor overall, digital peer support showed promising evidence of improving family caregivers’ well-being and feelings of depression, anxiety, and strain (38). In particular, Hopwood et al. found that online psychological support increased morale and mental health (38). This article also found that most participants appreciated peer support provided in online groups, which showed positive effects on stress. Finally, caregivers appreciated the convenience of having online contact with a professional who valued easy access to personalized practical advice and emotional support, reducing challenges and strain.
Although these results are promising, the potential for disseminating online peer support to diverse racial and socioeconomic groups is unclear. A recent review of online support groups for family caregivers found that most participants were white women with a university education (39). This study illustrated the urgent need to study online communities and support that are acceptable to people of different racial, ethnic, and socioeconomic backgrounds. One potential reason for this discrepancy is the lower availability of digital services and lower digital literacy in some lower and lower-middle-income countries, which may limit access to online peer support for these populations (40).
Efficacy and benefits of one-on-one peer support for informal caregivers of persons with dementia
Additionally, one-on-one peer support is a favorable support service for many people. Caregiver one-on-one peer support is individual meetings in which a peer supporter with experience caring for someone with dementia provides one-on-one guidance and empathic understanding and helps current caregivers adjust to their own experience (41). This type of peer support commonly includes untrained or minimally trained individuals who, instead of providing education guided by a treatment manual or theoretical approach, share their lived experience expertise.
In a mixed-method study, Wasilewski et al. (42) examined adult children caregivers and their relationship to peer support as they care for their aging parents. This study used a cross-sectional design to measure adult children caregivers’ engagement with online and in-person, one-on-one peer support. Data were collected through self-reporting by phone interviews and online surveys (n=15). Seventy-one percent of adult children caregivers completed the online surveys, with nearly 60% completing phone interviews. Over 48% of the participants cared for a parent with dementia, Alzheimer’s, or another cognitive impairment (42). Results showed that these adult children caregivers engaged in multiple kinds of one-on-one peer support. They utilized a blend of peer support, stating that in-person peer support could be challenging due to physical limitations like transportation and busy schedules (42). There was a high degree of acceptance of telephonic support. As one participant reflected, telephonic communication with other caregivers “felt similar to in-person support”. Overall, this study highlights the importance of offering peer support to caregivers in a delivery modality of their choice (i.e., in-person or telephonic support). Having options for delivery modality allows each caregiver to choose the best method for them.
Another mixed-methods study examined nineteen caregivers (n=19), and the impact befriending other peer support has on family caregivers of people with dementia. It also aimed to explore these caregivers’ experiences with peer support (43). This data was collected through surveys and interviews completed in person, usually at the caregiver’s home. Data were collected three times: at baseline, 3 months, and 6 months into the study. Factors such as demographic data, depression, anxiety, loneliness, and social support were all measured. Results showed that peer support offered increased emotional and social support, which helped develop better-coping skills (43). Having emotional and social support could help reduce the risk of mental and physical health challenges in caregivers.
Emerging digital caregiver peer support services for informal caregivers of persons with dementia
Within the past 4 years, digital health care has become increasingly developed and popular. Digital support services reduce inaccessibility barriers such as transportation, language, staff shortage, and service deserts. Digital caregiver peer support services may be delivered through a technology medium such as an app, text messaging, videoconferencing, or social media such as Facebook or YouTube. Digital caregiver peer support services are offered synchronously and asynchronously. In contrast to standard online platforms, digital platforms are typically optimized for smartphones or other portable devices. Here, we review three recent studies on emerging digital peer support platforms to support informal caregivers of persons with dementia.
First, a professionally moderated peer support intervention using the WeChat platform in China was studied with 154 caregivers of family members with dementia. Components include freeform peer support, chat, and structured educational sessions with a trained facilitator (44). Results suggested high feasibility and acceptance, demonstrating strong benefits for finding information about dementia and improving support. There were significant reductions in depression and stress, although average effect sizes were low.
Second, Jain and colleagues developed a mobile platform, CareDoc, supporting native iOS and Android applications to deliver mentalizing imagery therapy and caregiver skills to informal caregivers of persons with dementia for an ongoing randomized, controlled trial (45). Text-based chatrooms were built into the platform to enable integrated peer support facilitated by a caregiver specialist. To complement virtual telehealth groups, which served to establish personal connections among caregivers and to provide mentalizing imagery therapy and caregiver skills training, participants were assigned to chat groups. The aim of the chat groups was to provide a forum for continuous peer support between telehealth visits that could be maintained beyond the 8-week intervention period. Facilitation of the peer support chat groups was minimal and focused on maintaining safety, correcting misinformation, and ensuring the purpose of the chat group did not deviate from that of mutual caregiver support. Results from this trial with projected enrollment of 120 informal caregivers of persons with dementia are anticipated in 2025 (clinicaltrials.gov NCT05253443).
Third, a small, pre-/post-pilot study [2022] was conducted to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, “Caregiver Remote Education and Support” (CARES)—a smartphone application (19). To our knowledge, CARES is one of the first digital peer support tools to be co-produced between professionals and peer support in the community. Co-production goals included promoting several key principles of peer support, including “collaboration, engagement, shared decision-making, principles of reciprocal relationships, co-learning, partnership, trust, transparency, and honesty” (46). CARES includes weekly one-on-one meetings facilitated on a smartphone app. During each meeting, former caregivers are guided by peer-led videos and offer three evidence-based practices shown to support caregivers: (I) whole health [physical, mental, and social (i.e., loneliness, hope)] through goal setting, self-advocacy, healthy aging, developing and maintaining relationships, and crisis management; (II) peer support, which improves knowledge of aging with a mental health challenge and improves functioning; and (III) life review, which supports processing of late-life events like grief. This intervention was delivered to nine family caregivers in a pilot feasibility study.
Three former family caregivers were trained to deliver CARES. CARES was a usable, acceptable, and ethical intervention 2 weeks after this intervention (19). Quantitative results demonstrated promise for reducing stress, strain, and the challenges associated with caregiving. This pre-/post-field usability study demonstrated that it is possible to train former family caregivers of people with dementia to use technology to deliver evidence-based mental health interventions to current caregivers (19).
Discussion
The findings of this review highlight preliminary evidence of the efficacy and benefits of peer support interventions for informal caregivers of persons with dementia regardless of modality. Group peer support, whether delivered in person, by phone, or online, consistently shows a wide range of positive outcomes, such as improvements in psychological well-being, reduction in caregiver strain, reduction in depression and anxiety symptoms, and enhanced social support. Notably, longer intervention duration and smaller group sizes are associated with greater effectiveness. One-on-one peer support, where caregivers receive individualized guidance from others with similar experiences, also show evidence of being beneficial, particularly when delivered in a flexible format that accommodates the caregivers’ needs. Often involving peers who, rather than following a structured educational framework, draw upon their lived experiences to offer empathetic understanding, these interventions appear to be most effective at increasing emotional and social support in caregivers. Furthermore, emerging digital platforms for caregiver peer support, such as WeChat, CareDoc, and CARES, also show promise in reducing barriers to access and providing tailored support. These digital interventions, delivered through apps, text messaging, or videoconferencing, have shown feasibility and acceptance, with preliminary benefits of WeChat and CARES shown for depression and stress, better access to information, and improved social connectivity. Their flexibility in offering both synchronous and asynchronous communication makes them adaptable to caregivers’ varying schedules.
However, while digital platforms offer new opportunities for expanding access to peer support, it is crucial to consider the challenges posed by varying levels of digital literacy and access among caregivers. Digital literacy refers to the ability to effectively use digital technologies, encompassing skills like navigating the internet, using software, and understanding how to protect personal information online. The digital divide, on the other hand, highlights the gap between individuals who have access to and can use digital technologies effectively, and those who cannot, often due to socioeconomic, geographic, or educational disparities. Among older adults, including caregivers of people with dementia, this divide may be particularly pronounced due to physical challenges such as impaired vision or dexterity, cognitive barriers related to age-related decline, or a lack of familiarity with digital tools. Learning and adopting new technology may be particularly difficult for older adults, as they may struggle with interfaces often designed for a younger population. Older adult caregivers may also lack the confidence to explore digital platforms independently. This challenge is exacerbated in spousal caregivers, who are often elderly themselves. For these caregivers, digital peer support, while intended to reduce barriers like the need for travel, can also introduce new obstacles which may be overwhelming and deter participation. In contrast, adult children caregivers are generally more comfortable with digital technology, as they are more likely to have the skills needed to navigate online peer support platforms. This disparity within the population of dementia family caregivers underscores the need for digital peer support interventions to be designed with varying levels of digital literacy in mind.
In discussing the digital divide, it is important to include access and equity concerns, particularly socioeconomic disparities that can influence who can benefit from digital peer support interventions. By its very nature, digital delivery tends to exclude individuals who do not have access to a smartphone or digital technology. In the United States, the cost of a smartphone ranges from $300 to over $1,000, with approximately 17% of Americans above the age of 65 not owning one, a figure higher among lower-income groups (47,48). In middle and low-income countries, the financial burden is more pronounced, as the cost of a smartphone can represent a substantial portion of an individual’s annual income (49,50). Thus, future research should focus on developing interventions that address both digital literacy and access barriers, ensuring that caregivers regardless of their socioeconomic status or technological proficiency can benefit from digital peer support.
Limitations
Several limitations of this paper should also be addressed. First, the number of studies on peer support in group settings—particularly with digital delivery—is limited. Additionally, many of these studies had small sample sizes. Larger studies with diverse populations of family caregivers must be performed to demonstrate effectiveness and generalizability. This is particularly true as many studies only included White participants, leading to potentially homogenous samples. Furthermore, many of the studies in our review were conducted over a short time frame (e.g., weeks), whereas many peer support group interventions in the community may last years. The field would benefit from studies that examined the effects of long-term support group participation. Moreover, many studies in this review involved multi-component interventions, where peer support was one of several elements. This complicates interpretation, as the specific effects of peer support within multi-component interventions remain unclear given the unknown contribution and dose of each component. Future research should therefore focus on delineating the mechanisms within these multi-component interventions and assessing the standalone benefits of peer support groups. Additionally, our review only covered literature published up to January 2024. Due to the rapidly changing nature of digital peer support for this population, the emergence of new studies beyond this timeframe could influence the relevancy and timeliness of our findings. Lastly, determining the applicability of digital interventions to various stages of dementia, levels of neurobehavioral severity of symptoms, caregiver age, and different racial and ethnic groups would be helpful for future targeting of interventions.
Policy implications and related research next steps
The existing research base makes a compelling case for the feasibility and effectiveness of providing peer support services to dementia caregivers, particularly with online methods. Digital-based support offers unique benefits to caregivers, such as the ability to maintain anonymity, instant access to support, the convenience of receiving help within one’s own home, and the opportunity to carefully craft messages and connect with other caregivers online via discussion forums (51,52). These advantages underscore the importance of testing digital peer support in non-research settings to better understand its real-world applicability and impact.
However, overall, most interventions’ small to moderate effect sizes indicate a need for further innovation and better therapy targeting individual needs. Emergent digital innovations for peer support are promising for reducing accessibility barriers, but efficacy has yet to be demonstrated compared to control conditions. Moreover, the literature indicates that most studies have been performed on white participants, indicating a need for further research on racial and ethnic minorities.
A promising area for future work is demonstrating the effectiveness of these interventions in non-research settings and determining the cost-effectiveness of these services, as current trends in the health policy landscape provide an important opportunity to scale and fund cost-effective caregiver support. Both Medicare, which covers 95% of dementia patients, and Medicaid, which offers additional services to almost one-quarter of dementia patients with low household incomes, are increasingly using managed care arrangements to administer benefits (53,54). Unlike the historical fee-for-service structure, managed care provides reimbursement pathways for caregiver-focused services (55). Managed care plans are most likely to act on these new pathways when they are cost-effective, namely, when there is sufficient return on investment (ROI) to justify upfront investments via subsequent reductions in emergency department visits and other hospital-based care. A recent study suggests that providing caregiver benefits can be ROI-positive for Medicare-managed care plans. Steady year-over-year increases in Medicaid-managed care plans’ caregiver support offerings confirm an increasing appetite for benefit provision (56,57). To continue to build the relevant evidence base, researchers may consider outcomes to include caregiver/care beneficiary dyads, as a key driver of ROI is care beneficiaries’ health care utilization.
Conclusions
This narrative review highlights the state of the science of peer support services for family caregivers of those with dementia. As the science of peer support advances beyond proof-of-concept studies, caregiver peer support specialists may have an increasingly important role in the workforce, from providing evidence-based, fidelity-adherent interventions to expanding their reach to impact vulnerable populations and communities. Future research into the relationship between clinical outcomes and peer support interventions is essential to determine the large-scale benefit and scalability of digital peer support programs.
Acknowledgments
None.
Footnote
Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-19/rc
Peer Review File: Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-19/prf
Funding: This study was funded through
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-19/coif). K.L.F. reports equity in Skyview, a circadian lamp company, and Emissary Health Inc., a company focused on respite care. Neither company was involved directly or indirectly in any aspect of the manuscript or project. The other authors have no conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
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Cite this article as: Cui S, Crowe-Cumella H, Fortuna KL, Jain FA. A state-of-the-art narrative review of peer support for family caregivers of people with dementia: from in-person to digital delivery. mHealth 2025;11:9.