Palliative Care Coordination Interventions for Caregivers of Community-Dwelling Individuals with Dementia: An Integrative Review

Alzheimer’s disease is a serious illness with a protracted caregiving experience; however, care coordination interventions often lack the inclusion of palliative care. The purpose of this integrative review is to identify and synthesize existing care coordination interventions that include palliative care for individuals with dementia and their caregivers living in community settings. The Whittemore and Knafl framework guided the review, with data analysis guided by the SELFIE framework domains. Study quality was assessed using the Mixed Methods Appraisal Tool, while the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines informed reporting results. Nine care coordination interventions involving family caregivers across eighteen publications were identified. Only a single intervention explicitly mentioned palliative care, while the remaining interventions included traditional palliative care components such as advance care planning, symptom management, and emotional support. Many of the identified interventions lacked theoretical grounding and were studied in non-representative, homogeneous samples. Further research is needed to understand the lived experiences of people with dementia and their caregivers to alleviate care coordination burden.


Introduction
The World Health Organization estimates more than 55 million people have dementia worldwide, with nearly 10 million new cases annually [1].Alzheimer's disease is the most common form of dementia and affects approximately 6.7 million Americans aged 65 and older or 1 in 9 people over the age of 65 [2].Global estimates of persons with Alzheimer's disease are approximately 22% of those aged 50 and above [3].Future estimates suggest that by 2050, 152 million people globally will be living with Alzheimer's disease and related dementias [4].The often-extended illness trajectory for persons living with Alzheimer's Disease and Related Dementias (ADRDs) coupled with progressive decreases in cognitive functioning creates a complex environment for symptom self-management, often requiring family caregiver assistance.A recent report from the Alzheimer's Association indicates that 70% of dementia caregivers within the United States report that coordinating care is stressful [5] compared to 54% of dementia carers globally [6].Furthermore, 50% of global dementia caregivers report that their health has suffered as a result of caregiving responsibilities, despite expressing positive sentiments regarding their caregiving role [6].In 2023, more than 11 million Americans provided unpaid care to someone living with ADRDs [7].Informal care hours for those living with dementia are estimated to be 133 billion hours annually [8].According to the Centers for Disease Control, an informal caregiver provides regular care or assistance to a friend or family member who has a health problem or disability [9].Informal caregivers commonly report challenges with care coordination activities.In the 2020 update of the Caregiving in the US report, 31% of caregivers reported having at least some difficulty in coordinating care among their care recipient's healthcare providers, previously reported at 23% in 2015 [10].The Agency for Healthcare Research and Quality (AHRQ) [11] defines care coordination as "deliberately organizing patient care activities and sharing information among all participants concerned with a patient's care to achieve safer and more effective care with a primary goal of meeting patients' needs and preferences in the delivery of high-quality, high-value healthcare".Examples of care coordination tasks assumed by informal caregivers of persons with ADRDs include managing medical appointment scheduling/attendance often for multiple providers, attendance at community programs (such as support groups or respite care), transportation needs, and assistance with activities of daily living.Consequences of poor care coordination include increased caregiver stress and burden [12] as well as fragmented care from multiple providers that lacks continuity, resulting in suboptimal outcomes for those living with ADRDs and their caregivers [13].
Management of ADRDs is complex and those diagnosed with ADRDs report needing assistance obtaining accurate and helpful information, understanding diagnosis and disease trajectory [14], living with the symptoms of dementia, learning to do things differently, and establishing coping mechanisms [15].In contrast, caregivers report stressors associated with personal care, housekeeping, medication administration, financial responsibilities, and difficulty maintaining professional and social connections [16].Concerns for the safety of the person living with ADRDs were also reported by caregivers in four primary areas: physical harm, economic harm, emotional harm, and relational harm [17].Care coordination is a potential strategy for aiding persons living with ADRDs and their caregivers in managing their complex needs.
Care coordination is aimed at organizing complex systems of care to meet the needs and preferences of patients during the delivery of high-quality, high-value care [11].Knowledge sharing, care planning, and aligning resources with patient and family needs are a few strategies used to achieve effective care coordination.These activities can be based in acute care settings such as hospitals, outpatient settings such as primary care, or community settings such as the Alzheimer's Association Dementia Care Coordination program.Evidence suggests that high continuity of care improves outcomes for persons living with ADRDs [18][19][20].

Problem Identification
Despite the serious nature of Alzheimer's disease, care coordination interventions often lack integration of palliative care.Palliative care is specialized care for individuals living with serious illnesses aimed at providing symptom relief and improving quality of life for patients and families [21].In addition to aiding persons living with ADRDs and caregivers with symptom management (e.g., agitation, pain), palliative care incorporates a holistic approach and also focuses on other aspects such as psychological, social, and spiritual needs for caregivers and care recipients [22].A common misconception is that palliative care should only be offered when an individual is nearing death; however, palliative care is available and should be offered to all patients living with serious illnesses at any point in their care, including at diagnosis [23][24][25][26].Early access to palliative care increases the opportunity for persons living with ADRDs to collaborate with caregivers to plan accordingly for future care based on individual needs and preferences, which becomes increasingly difficult as cognition declines over the illness trajectory.Existing systematic reviews have examined psychosocial interventions for persons living with ADRDs [27][28][29], the significance of caregiver interventions on caregiver outcomes [30][31][32][33][34][35], and mHealth applications [36].However, none to date have specifically examined the integration of palliative care into care coordination interventions for community-dwelling persons with ADRDs.Current estimates suggest that approximately 80% of individuals with ADRDs are community-dwelling [37].Thus, understanding the existing scope of care coordination interventions for those living with ADRDs and their caregivers is a critical step to improving outcomes.The aim of this integrative review is to synthesize existing evidence on care coordination interventions that integrate palliative care for community-dwelling persons with ADRDs and their caregivers.

Materials and Methods
Whittemore and Knafl's framework was selected to guide this integrative review [38] since the primary goal was to synthesize existing evidence.This framework has five stages: problem identification, literature search, data evaluation, data analysis, and presentation.Employing the Whittemore and Knafl framework allowed for the inclusion of diverse methodologies, thus the included studies provide a more comprehensive view of available research.In addition, for reporting purposes, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed, which includes a flow chart.

Literature Search Strategy
Following consensus by all team members on a defined search strategy, a systematic literature search was conducted by a single author.The electronic databases included Scopus ® , PubMed, ProQuest Healthcare Administration Database, and seven databases within the EBSCOHost platform, including Medline, CINAHL Complete, Academic Search Premier, APA PsychInfo, and Health Source (Nursing/Academic Edition, Consumer Health Complete, and Psychology and Behavioral Sciences Collection).The searches were conducted using advanced adaptive keyword searching in each database to consistently use the same or similar search terms based on the taxonomy of the database.The final search was conducted in May of 2023 to find all the palliative care interventions with caregivers using the following terms: ("care coordination" OR "case management") AND ("family caregivers" OR "informal caregivers" OR relatives OR family) AND ("palliative care") AND (intervention) AND (dementia).Following the electronic databases search, a handsearch of personal libraries, articles found incidentally (i.e., Google Scholar), and those obtained from the reference lists of relevant articles were also included.Once the electronic search and hand search were completed, all citations were uploaded to Covidence [39] to complete screening and evaluation.Detailed search strategy and completed PRISMA diagram are included within the Supplementary Materials.

Inclusion and Exclusion Criteria
The inclusion and exclusion criteria were developed collaboratively during team meetings based on the stated aim.Specific time restrictions for inclusion were intentionally not included to ensure a comprehensive review of available interventions.Quantitative, qualitative, and mixed methods studies were included if (1) a care coordination intervention was described, (2) the intervention included informal dementia caregivers, and (3) palliative care was incorporated within the intervention.Excluded articles included those that (1) described interventions focused on healthcare workers and (2) were aimed at hospital processes such as nurse case management within the hospital.Informal caregivers were defined as spouses, parents, relatives, or friends.

Data Evaluation
Covidence [39] was used to screen, extract, and assess all manuscripts.All documents were uploaded into Covidence, where title abstract screening was mainly conducted by one reviewer (DL), followed by a shared full review by two authors (DL and KL), with a third author (AL) handling conflicts.The Mixed Methods Appraisal Tool (MMAT) [40] was used to assess the quality of all relevant articles after full-text review.What data to be extracted from each article were discussed and agreed upon as a team and then added to Covidence using the Data Extraction Template.Finally, the MMAT was created in Covidence using the Quality Assessment Template.Both were performed by one author (DL).The MMAT contains five questions to assess study quality based on study design.Studies that met all five criteria were categorized as high quality.Studies that addressed four criteria were categorized as moderate quality and those meeting three or fewer criteria were classified as low quality.(See Supplementary Materials for the search strategy and procedures employed in each of the databases or platform searches).Upon completion of the data extraction and quality assessment in Covidence, results were exported to Excel for further analysis.

Data Analysis
The Sustainable Integrated Chronic Care Models for Multi-morbidity: Delivery, Financing, and Performance (SELFIE) framework for integrated care for multi-morbidity was used to organize the results of this review [41] (Table 1).This framework utilizes the World Health Organization's (WHO's) six health system building blocks as separate domains within the model [42] organized into micro, meso, and macro levels, with the individual with multi-morbidity and their environment centrally located within the model [41].The WHO's six building blocks of health, which each encompass a single domain of the model, include service delivery, leadership and governance, workforce, financing, technologies and medical products, and information and research.Within this model, the individual and their environment are viewed with a holistic lens incorporating health, well-being, capabilities, self-management, needs, and preferences.Environmental factors such as housing, social network, finances, availability of community services, physical surroundings, and accessible transportation are also considered from the individual's perspective.Within each of the model domains, micro components focus on the individual level, meso components are aimed at the community level, and macro components are aimed at health policy, infrastructure, and financially sustainable models of care.Monitoring at each of these levels within each domain is also incorporated.Interventions were categorized using the SELFIE domains at each applicable level (micro, meso, macro).Table 1 provides a description of each domain and examples of micro-, meso-, and macro-level activities.

Results
The initial search yielded 2693 articles.Following duplicate removal, 1743 abstracts and titles were screened for inclusion, with 250 assessed using full-text review.Following full-text review, a total of 18 manuscripts met the inclusion criteria (see Supplementary Materials).Overall, nine unique care coordination interventions involving caregivers and integrating palliative care were identified across the 18 publications.The named interventions included Admiral Nursing [43][44][45], Dementia Care Coordination [46], UCLA Alzheimer's and Dementia Care/D-Care [47][48][49], ACCESS [50,51], PEACE [52,53], the MIND [54], COACH [55], the Live@Home [56,57], and Partners in Dementia Care (PDC) [58][59][60].Most interventions (seven) addressed micro-and/or meso-level characteristics on the SELFIE framework domains and levels, but few (two) addressed macro-level characteristics across all six domains of the SELFIE model.The sample size ranged from 35 to 2150, with mostly white participants over 60 years old.
Most interventions were studied within the United States (72%), while the remaining interventions were studied in the United Kingdom (17%) and Norway (11%).Table 2 contains the intervention description, study design, sample characteristics, study aims, and results of included interventions.Several interventions had more than one publication reporting results, some of which used various study designs.For example, the Palliative Excellence in Alzheimer's Care Efforts (PEACE) program reported results from a qualitative study [52] as well as published a program description [53].Table 3

Service Delivery
All interventions addressed service delivery at the micro level.These interventions were person-centered, involved caregivers, and were delivered using various mechanisms (via telephone, in-person, or a combination of in-person and telephone).Each intervention embraced shared decision-making, which is a key tenet of micro-level interventions within the service delivery domain.Six interventions addressed service delivery at the meso level-palliative excellence in Alzheimer's care efforts (PEACE) [52,53], Admiral nursing [43], dementia care coordination (DCC) [46], hospital-based dementia care and community-based care [49], dementia guideline-based care [50], and Partners in Dementia Care (PDC) [58]-due to the distinct integration of community resource referrals.There were no interventions that addressed market regulation policies to integrate care across organizations and sections, or service availability and access, which was required at the macro level of service delivery within the model.No statistically significant difference in caregiver outcomes between groups.However, a clinically relevant improvement in the amount of caregiver time spent with the care recipient was observed.Three themes emerged as primary functions of the coordinator: being a safety net, being a pathfinder, and being a source of emotional care and support.Coordinators identified having a trusting leader and working environment as critical to their success.Coordinators also found it challenging to build trusting relationships with the person living with dementia to empower decision-making.

Leadership and Governance
All included interventions addressed the leadership and governance domain at a micro level through shared decision-making.Admiral nursing was the only intervention that did not specifically describe an individualized care plan.Four interventions were aligned with the meso level [49,50,52,58] because of the distinct integration of community resource referrals.None of the interventions addressed policy and action plans related to chronic diseases and multi-morbidity or political commitment, which would have been classified as macro-level interventions within this domain.

Workforce
All interventions addressed the workforce at the micro and meso levels; however, none addressed macro-level components.Each intervention included a named coordinator and multidisciplinary team that are aligned within the micro level of this domain.Further, all interventions also provided informal caregiver support that aligns with a meso-level intervention.None of the interventions included workforce demography match and/or educational and workforce planning, which would have been required to align with the macro level of the framework.

Financing
Only a single intervention addressed the financing domain at the micro level, which included information related to coverage and reimbursement and out-of-pocket costs [59].Bass [59] reported a cost estimate for program sustainability of 60 USD -80 USD monthly per dyad (person living with Alzheimer's Disease and their identified care partner).Furthermore, no interventions included incentives for collaboration, risk adjustment, shared savings, secured budgets, or a business case that encompasses the meso level within this domain.Finally, none of the included interventions addressed equity and access, stimulating investments in innovative care models or financial systems for health and social care, which are macro components within the financing domain.

Technologies and Medical Products
Seven interventions addressed technologies and medical products at the micro level across ten publications [43][44][45][46][47][49][50][51]54,[56][57][58]60], with one intervention also addressing meso-level components across two publications [50,51].Integration of electronic medical records, case-management-specific software, and/or patient portals was incorporated within Admiral nursing, Dementia Care Coordination (DCC), health system and community-based dementia care program, dementia guideline-based disease management, PEACE, MIND, and COACH-interventions that addressed micro-level components of the technologies and medical products domain.The LIVE intervention incorporated an evaluation of currently used assistive technologies with recommendations of other potentially useful assistive technologies for the individual living with dementia and their caregiver based on individualized needs that also address the micro level.Shared information systems within the interventions and/or interoperable systems were included within PDC and described as the PDC care coordination information system (CCIS), which functioned to share information across agencies and act as a centralized care plan for enrolled participants.Additionally, no interventions addressed policies fostering technological innovation.However, the LIVE@Home intervention did facilitate access to technologies and medical products not currently in use based on individual assessments of the needs of enrolled participants.

Information and Research
Five interventions were categorized as addressing information and research at the micro level across eight publications [46,50,51,54,[58][59][60]. Interventions that included individual-level data and/or individual risk prediction were categorized as micro-level interventions.None of the interventions addressed data ownership and protection, inno-vative research (methods), or risk stratification that aligns with the meso level within this domain.Macro-level components of this domain, including privacy and data protection legislation, policies that stimulate research in integrated care and multimorbidity, and access to information were not addressed by any intervention.

Integration of Palliative Care
Examples of palliative care integration within each intervention included activities such as disease-specific education, symptom management, and/or emotional support.Interventions that incorporated disease-specific education included dementia guidelinebased care, MIND, PDC, Admiral nursing, and DCC.Interventions that included content related to symptom management included Admiral nursing, DCC, and dementia guidelinebased care.Finally, descriptions of the MIND intervention specifically mentioned the provision of emotional support to both patients and caregivers.

Discussion
The aim of this integrative review was to synthesize existing evidence of care coordination interventions that integrate palliative care for community-dwelling PLWD and caregivers.The identified interventions provide a variety of resources, including care management from diagnosis through bereavement.Delivery of the interventions differs per intervention, with delivery by healthcare professionals, including physicians, advanced practice nurses, nurses, social workers, and community health workers delivering intervention components.Findings from this integrative review suggest that identified interventions were person-focused, with some community engagement; however, interventions addressing health policy, infrastructure for care coordination involving caregivers, and integrating palliative care are lacking.Additionally, sustainable financial models are needed to support these types of interventions.These findings are consistent with a recent National Academies of Medicine, Science, and Engineering (NAMSE) report [61], which recommended the Centers for Medicare and Medicaid Services investigate the value of collaborative care models as a benefit through Medicare Advantage programs, alternative payment models, and fee-for-service beneficiaries.
In comparative literature, Sydney et al. [62] conducted a systematic review of continuity, coordination, and transition of care for patients with serious and advanced illnesses and found methodological issues in measurement tools for patients with advanced illnesses and moderate evidence that interventions targeting continuity, coordination, and transitions in patients with serious illness improved patient and caregiver satisfaction, but had low evidence of impact on outcomes [62].In another study, Bajwah et al. [63] conducted a metaanalysis that assessed the effectiveness and cost-effectiveness of hospital-based specialty palliative care (HSPC) compared to usual care for adults with advanced illness and their unpaid caregivers/families.They reviewed 42 randomized control trials evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both and found very low-to low-quality evidence suggesting that, compared to usual care, HSPC may offer small benefits for several person-centered outcomes while also increasing the chances of patients dying in their preferred place (measured by home death).They found no evidence that HSPC causes serious harm; however, the evidence was insufficient to draw strong conclusions and they recommended that more research, particularly including patient-centered outcomes, is needed [63].

Strengths and Limitations
Several limitations exist that should be discussed.Due to the broad scope and heterogeneous nature of the included sample, integrative reviews are prone to error [38].Only studies published in English were included in this review.Furthermore, dissertations and non-peer-reviewed literature were also excluded.Additional limitations include the varied sample sizes of the included studies, limited racial and ethnic diversity across study participants, and limitations in longitudinal study designs.Finally, definitions of key terms such as 'caregiver', 'palliative care', and 'care coordination' varied across studies, which increases the potential for the omission of applicable studies.Despite these limitations, the use of the MMAT to evaluate study quality and the inclusion of a medical librarian as part of the team to develop a comprehensive search strategy strengthened this review and its findings.

Conclusions
Additional research is needed to better understand the lived experience of patients with serious illnesses, including persons with ADRDs and their caregivers.This review synthesized existing care coordination interventions that integrate palliative care for community-dwelling individuals with ADRDs and their caregivers and found that most existing care coordination interventions that incorporate palliative care are not grounded in theoretical and/or conceptual models.Further, these interventions have been primarily tested in a homogenous population, which suggests that further studies using a more representative sample are necessary to ensure equitable access to comprehensive care coordination that integrates palliative care and caregivers.

Supplementary Materials:
The following supporting information can be downloaded at: https:// www.mdpi.com/article/10.3390/nursrep14030130/s1,File S1: Detailed search strategy and completed PRISMA diagram.Author Contributions: Conceptualization, D.L.; methodology, D.L., A.L. and K.L.; validation, K.L.; formal analysis, D.L., A.L. and K.L.; writing-original draft preparation, D.L.; writing-review and editing, A.L and K.L.; funding acquisition, D.L.All authors have read and agreed to the published version of the manuscript.Funding: This publication was supported, in part, by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Numbers KL2TR001452 and UL1TR001450.The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.Institutional Review Board Statement: Not applicable.
contains theoretical underpinnings, SELFIE framework domains and levels, and study quality for all nine interventions.Most interventions addressed a minimum of four or more of the six domains within the SELFIE model and interventions primarily focused on micro-and meso-level interventions.Most studies were categorized as low quality based on the MMAT criteria.Study protocols and program descriptions were not assessed for study quality.