Dementia care quality at home: a dementia care curriculum for home-based primary care

Abstract

Background

Dementia is highly prevalent among the 7.5 million homebound older adults in the United States. Despite this high dementia prevalence, dementia care interventions and associated curricula developed to date have focused nearly exclusively on office-based primary care and have not been adapted to the unique care setting, staffing, and workflows of home-based primary care (HBPC), which includes longitudinal multidisciplinary in-home primary care of older adults with severe functional impairment. We developed and implemented a pilot study of the Dementia Care Quality at Home (DCQH) curriculum to train HBPC clinicians and staff in person-centered dementia care. The objective of this study is to evaluate the DCQH curriculum.

Methods

The curriculum comprised 8 required and 4 optional asynchronous video training modules, two 90-minute synchronous skill-building sessions focused on training for implementation of a standardized assessment, and six core dementia care modules through structured home visits, and monthly case conferences. Learners completed baseline assessments and care modules with patients and caregivers, followed by fidelity reviews and post-intervention focus groups. We assessed learners’ knowledge via training questionnaires, completion rates, fidelity of assessments and care modules, and the reported feasibility and acceptability of the curriculum using both quantitative and qualitative methodology.

Results

Twenty-one HBPC clinician and staff learners completed training and post-curriculum surveys. Fifty assessments and 256 dementia care modules were successfully delivered, with 92% fidelity by audit. Learners qualitatively reported increased confidence in dementia care domains including symptom management, behavior strategies, caregiver support, and interdisciplinary collaboration. Focus groups highlighted improved team cohesion and consistent care delivery. Caregivers valued having structured time outside of traditional medical visits to address dementia-specific concerns.

Conclusion

The DCQH curriculum improved knowledge, workflow integration, and interdisciplinary collaboration among HBPC teams, while offering caregivers enhanced support. This structured, scalable model shows promise for improving dementia care delivery in home-based settings and may serve as a framework for future training in geriatric care settings.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12909-026-09248-x.

Background

Approximately 7.5 million older adults in the United States are homebound [1]. Between 40 and 80% of homebound older adults have dementia, which imposes a significant burden not only on patients but also on their caregivers, who frequently experience high levels of stress, anxiety, and reduced emotional well-being [2].

Dementia caregiving is associated with substantial psychological, physical, and financial strain, and caregivers frequently report unmet needs for education, behavioral management strategies, and system navigation support [3, 4].

Homebound older adults’ access to ambulatory office-based primary care is often limited. Home-based primary care (HBPC) provides comprehensive, longitudinal medical care delivered by an interdisciplinary team including physicians, nurse practitioners, nurses, social workers and others directly in patients’ homes. It is designed for individuals who are homebound. Given that the prevalence of dementia among homebound older adults is approximately 50%, HBPC practices must be equipped to provide high-quality dementia care that supports both patients and caregivers.

Home-based primary care (HBPC) programs operate nationally through academic medical centers, independent physician and nurse practitioner-led practices, health systems, and the U.S. Department of Veterans Affairs. HBPC delivers longitudinal, interdisciplinary primary care in patients’ homes and is designed for individuals with advanced functional impairment who cannot access office-based primary care, multimorbidity, and high healthcare utilization. Compared with traditional office-based primary care, HBPC emphasizes home-based assessment, caregiver engagement, and prevention of emergency department visits and hospitalizations. HBPC has expanded nationally as a strategy to improve care for medically complex, homebound adults and has been associated with reductions in hospitalization and healthcare utilization [5].

Dementia prevalence within HBPC populations is substantially higher than in general primary care, and patients often present with more advanced cognitive and functional impairment. Consequently, caregivers in HBPC settings frequently experience elevated burden due to greater behavioral symptoms, dependency, and complex care coordination needs [6]. In HBPC, there is substantial variation in dementia management including issues related to assessment of patients and caregivers and in how interdisciplinary teams coordinate dementia-specific interventions [7]. Despite the central role of primary care in dementia management, clinicians frequently report limited training, low confidence in managing behavioral symptoms, and inadequate infrastructure to support comprehensive dementia care [8, 9]. An improved care model in this context includes measurable improvements such as standardized needs assessments, systematic delivery of evidence-based care modules, improved team communication, and greater clinician confidence and competency in managing behavioral symptoms, medications, and caregiver stress. These gaps highlight the need for structured, scalable training approaches tailored specifically to HBPC workflows.

Existing dementia care models, such as Care Ecosystem and its adapted version, CRESCENT, were developed for and have demonstrated benefit in office-based primary care by implementing standardized assessments, evidence-based interventions, and team-based case conferencing [10, 11]. These models have improved patient quality of life, reduced caregiver burden, and enhanced clinician competency in dementia care. HBPC differs significantly from office-based care, and existing models require significant adaptation to be effective in HBPC where the prevalence of dementia is much higher and the clinical workflows and practice resources vary significantly compared to office-based practice.

National initiatives such as the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act have emphasized strengthening public health and community-based dementia care systems, underscoring the need for scalable workforce training models [12]. Similarly, the Centers for Medicare & Medicaid Services (CMS) recently launched the Guiding an Improved Dementia Experience (GUIDE) Model to support coordinated dementia care and caregiver services in community settings [13].

To bridge this gap, we developed and tested the feasibility and acceptability of the Dementia Care Quality at Home (DCQH) care model to deliver comprehensive, person-centered dementia care by HBPC practices [14]. As part of DCQH, we developed a structured curriculum to train HBPC clinicians and staff in delivering dementia care. The goal of this paper is to describe the development and evaluation of the DCQH curriculum. This curriculum was intended to optimize dementia care for homebound older adults receiving HBPC by improving the knowledge, skills, and collaborative methods among providers and staff in HBPC practices and to support the caregivers of people living with dementia (PLWD).

Methods

Overview

Learners

The targeted learners for the curriculum were HBPC clinicians (physicians, nurse practitioners, nurses, social workers) and staff (medical and practice assistants) in two HBPC practices (one in Virginia and one in Hawaii) in which the DCQH was pilot tested for feasibility and acceptability. Each practice designated personnel to participate in the pilot study and engage with the curriculum. Learners were expected to have prior experience of caring for PLWD and their care partners through their experience in HBPC. The curriculum employed a standardized approach across HBPC practices.

Learning goals

The learning goals of this curriculum were designed using Bloom’s Taxonomy to promote progressive skill development from foundational knowledge to applied clinical practice [15]. Learning goals were conceived at the individual learner level and at the practice level. After completion of the curriculum, individual learners were expected to be able to: (1) describe key aspects of dementia and dementia care (2) conduct standardized assessments and prioritize relevant care challenges to be addressed, and (3) deliver care using structured dementia care modules to caregivers of PLWD. By the end of this curriculum, HBPC practices were expected to be able to (1) implement a standardized strategy for dementia care management appropriate to the workflows of the HBPC practice and (2) support caregivers of people living with dementia through a structured care model.

Curriculum components and training

The curriculum was delivered virtually in both asynchronous and synchronous fashions by home-based care experts from Mass General Brigham and Johns Hopkins University. Home care teams were each provided with modest financial support in consideration for their time for data collection and training. The synchronous sessions were embedded outside of home visit hours. There were two major components of the curriculum.

Asynchronous training.

The asynchronous training comprised 12 video training modules (8 required and 4 optional) (Appendix 1) on key issues in dementia and dementia care adapted to home-based care to be completed at a time convenient for each learner. The total time across all required and optional training modules was 2 h and 38 min and average video module length was 13 min long. Table 1 depicts training module topics and associated learning goals. Synchronous training.

Table 1.

Learning goals, scores, and key learnings by learners for each asynchronous training module

Training Module	Learning Goals	Helpv score [1–10] Average, SD	Summary of Key Learnings by Learners
REQUIRED (n = 21)
Dementia Basics Part 1	● Describe the functional characteristics of different parts of the brain and how they relate to symptoms of dementia​ ● Describe the main theory for what causes dementia​ ● Describe why new biomarker tests are being developed to improve diagnosis of dementia	8.57, 1.67	● Learners appreciated the clear review of dementia pathophysiology, stages, and brain structure, especially with visuals linking brain regions to specific symptoms and disease variants. ● The training reinforced that different types of dementia have distinct causes, behaviors, and symptoms, and highlighted the modest role of available treatments in slowing cognitive decline without curing the disease.
Dementia Basics Part 2	● Describe symptoms that characterize vascular dementia​ ● Recognize modifiable risk factors for vascular dementia​ ● Review common medications used for people with vascular dementia ​	9.29, 1.27	● Learners appreciated the clear distinctions between dementia subtypes and the importance of subtype-specific management. ● Learners valued reminders about modifiable risk factors and how different dementias affect symptoms and caregiving needs.
Medications	● Describe an adverse drug reaction​ ● Provide a brief overview of selected guidelines related to geriatric therapy​ (Beers List, START and STOPP criteria) ● Identify medications used for common problems in dementia​ ● Understand the expected benefit of medications for dementia, ● ​Describe dosing and monitoring for cholinesterase inhibitors and memantine​	8.95, 1.31	● “The new approved medications for dementia have a very modest benefit.” ● Learners understood that there are different medications for different types of dementia and adverse effects of certain medications.
Caregiver Wellbeing	● Understand the negative and positive impact that dementia can have on the family caregiver in terms of their physical health, mood, financial wellbeing ● Identify at least two reasons why a caregiver ​might enjoy or find meaning in being a caregiver	9.10, 1.38	● Learners appreciated the emphasis on treating caregivers as integral members of the care team, highlighting both the challenges and the positive aspects of caregiving and the need for proactive support and care planning. ● There was strong recognition of the importance of monitoring caregiver well-being, providing resources, and using dementia-trained clinicians to identify and address caregiver needs systematically.
Safety	● Recognize five key and common home safety risks associated with dementia​ ● Identify four strategies for reducing safety risks for persons with dementia​	9.28, 1.27	● Caregivers and providers must move beyond “hope” by proactively assessing and planning for home safety risks to prevent emergencies and support safer aging in place. ● Simple yet critical interventions—like securing furniture, removing locks, using safety checklists, and educating caregivers—can significantly reduce fall risks and accidents for people living with dementia.
Behavior Management	● Understand that behavior symptoms correlate with areas of brain damage​ ● Recognize five unmet needs that may contribute to behavior symptoms​ ● Identify five potential environmental triggers for behavior symptoms​ ● Identify three caregiver factors that contribute to behavior symptoms​	9.14, 1.35	● Behavioral symptoms in dementia are often influenced by environmental factors, caregiver responses, and unmet needs, and can frequently be managed effectively through non-pharmacologic strategies like the DICE approach before turning to medications.(11) ● Understanding the differences between dementia and delirium, and emphasizing systematic, empathetic communication is crucial for better caregiver support and patient outcomes.
Decision Making	● Upon completion of this training module, you will be able to:​ ● Apply ethical/legal standards of capacity to your work​ ● Explain how to assess for capacity and who can make determinations of capacity, and on what grounds​	9.28, 1.27	● Learners emphasized that advance care planning is a continuous process, not a one-time document, and should begin early while patients still have decision-making capacity. ● There was appreciation for clarifying that capacity is task-specific (not global), fluctuates over time, and differs from legal competence, with guidance on assessing capacity and identifying appropriate surrogates.
Financial	● Describe the qualities of a good financial caregiver​ ● Understand why it is important for a person with dementia to have legally-recognized financial caregivers.	9.05, 1.43	● Learners emphasized the critical need for early financial planning, encouraging patients to appoint a trusted financial power of attorney (POA) while they still have capacity to prevent future legal and financial hardships. ● There was an appreciation for learning about the differences between financial and healthcare planning, various account options, and the legal distinctions between capacity and competency.
OPTIONAL
Guardianship	● Define guardianship ● Name at least two ways to help avoid guardianship	7.17, 1.83 n = 6	● Appointing guardianship earlier is better to avoid complications later in the disease process: “the earlier the better”. ● Guardianship can be expensive and is not the best option if it can be avoided.
Hospitalizations	● Describe why people with dementia are at increased risk of hospitalization​ ● Identify common risks and reasons for hospital admission among persons with dementia receiving home-based primary care ● Describe adverse outcomes of hospitalization for people with dementia​ ● Describe strategies for reducing unnecessary hospitalization among people with dementia receiving HBPC​	7.50, 2.07 n = 5	● Recognizing the warning signs of delirium, providing caregiver education, and using claims-based data and flow charts are important strategies for managing dementia care.
Tube Feeding	● Understand most patients’ progression from mild to moderate to advanced dementia​ ● Explain why tube feeding is not recommended for patients with difficulty eating​ ● Explain why we try to avoid hospitalization in advanced dementia​	7.17, 2.32 n = 6	● Learners understand that tube feeding in advanced dementia does not improve mortality outcomes. ● In advanced dementia care, prioritizing comfort over calorie count reflects a more compassionate, lifestyle-centered approach.
VA Benefits	● Learn the different types of benefits available ​to veterans, including income benefits​ ● ​Understand the basics of VA healthcare​ ● ​Know where to send veteran patients and families to get help with VA benefits	7.83, 1.94 n = 6	● Learners gained awareness that there are many underused benefits, such as home health aides and respite options, and service providers may need to guide caregivers to access these resources.

Synchronous training

DCQH adapted the Care Ecosystem dementia care model and its clinician-oriented adaptation, CRESCENT for the HBPC setting [16]. Using the FRAME adaptation framework, the program was designed through stakeholder engagement to ensure relevance, usability, and integration into HBPC workflows [17, 18]. DCQH retained three core components from Care Ecosystem:

1. A structured baseline needs assessment for PLWD and their caregivers.

2. Six dementia care modules, prioritized based on needs assessment findings: medication management, safety, behavior management, decision-making, caregiver well-being, and community resources. Each care module provided specific structured guidance on (a) assessment, (b) management strategies, (c) caregiver-focused resources, adapted for the HBPC setting.

3. A biweekly, team-based case conference for discussing patient needs and intervention-related learnings.

The synchronous training comprised two 90-minute live sessions over Zoom video conference with trainers and the entire practice clinical and non-clinical staff that would be involved in delivering DCQH care. The first live synchronous training session, “Skill Building and Support Session 1,” with a PowerPoint presentation (Appendix 2), included in-depth information about the role of a learner, the needs assessment, the structure and components of a care module, and a simulation of how to prioritize care modules for implementation with a patient based on data obtained from the needs assessment. The second live synchronous training session “Skill Building and Support- Session 2” with a PowerPoint presentation (Appendix 3) provided in-depth reviews of each DCQH care module with details on implementation including a step-by-step simulation of conducting a care module with a caregiver and patient in the home.

Implementation in clinical practice

HBPC practices designated at least one dementia-trained clinician to lead DCQH integration into the practice. Training for all participating clinicians and staff included asynchronous training modules, live synchronous training sessions, and ongoing support.

HBPC staff trained in DCQH conducted the baseline needs assessment in the home. Direct observation of the home environment and caregiver-PLWD interactions supplemented the assessment. Following completion of the needs assessment, HBPC clinicians engaged caregivers in a prioritization discussion to determine the order in which to implement care modules with the caregiver over time. Learners (trained HBPC staff) delivered care modules to caregivers and patients in the home setting based on their clinical workflow of home visits over the subsequent months.

Measures

At the end of each asynchronous training module, all learners completed a learning assessment (Appendix 4). This assessment included a mix of Likert scale, multiple choice, and open response questions: “on a scale of 1–10, how much did this session help you?”, “Tell us about the level of detail (not enough, just enough, or too much) and “How much time did it take you to complete this training” (not enough, just enough, or too much). Open responses included “Were there any other topics that you would have liked for us to cover during this training module” and “What was your biggest takeaway/learning from this presentation?” The research team quantitatively analyzed the Likert scale and multiple-choice answers and qualitatively coded open responses to generate key learnings by learners. The Likert scale scores [1–10] and key learnings are present in Table 1.

The research team conducted follow-up surveys for learners after the completion of the intervention implementation in clinical practice. To assess the learners’ ability to conduct and complete standardized assessments and prioritize relevant challenges, the team documented the number of assessments conducted and assessed the fidelity of learners in conducting the standardized learning assessments with caregivers in the home setting.

Five de-identified baseline needs assessments and one of each of the 6 care modules were randomly selected from each site for fidelity evaluation. The assessments and care modules were reviewed by study team members (MS, AT). Fidelity was rated as complete if all elements of the baseline needs assessment and the care modules were completed or partially completed (some but not all elements were completed).

To assess the learners’ ability to deliver structured care modules to caregivers of people living with dementia, we documented the number of total care modules conducted by each practice and assessed the fidelity of learners delivering care modules with caregivers in the home setting. To measure the fidelity of assessments and care modules, we obtained a random sample of 10 completed assessments and 12 completed care modules from practice sites.

In addition to the follow-up survey, HBPC practice staff participated in a focus group (one 1-hour focus group per site) to share qualitative data on their experience during the training and implementation of the DCQH intervention (Appendix 5). The focus groups were analyzed using deductive live rapid data analysis during focus groups [18].

Results

Learners-level results

21 learners (3 MDs, 10 NPs, 3 RNs, 3 SWs, 2 administrative staff members) from two HBPC practices completed training and the post-curriculum follow-up survey. Participants’ scores regarding how much the module helped them, separated by training module, and a qualitative response summary, are depicted in Table 1. On average, scores for the required training modules were 9.21/10 and 7.42/10 for.

the optional modules. After training completion, learners highlighted a stronger understanding of dementia pathophysiology, dementia subtypes, medication management, caregiver needs, safety planning, behavior strategies, and decision-making capacity and finances. Learners also stated that the optional modules reinforced the importance of early planning for guardianship, avoiding unnecessary hospitalizations, prioritizing comfort in advanced dementia, and connecting veterans to underused benefits.

Nineteen learners self-reported a total of 50 completed assessments and prioritization of care module order (100% completion rate). However, only 70% of audited baseline assessments were fully completed. Thirteen learners delivered a total of 256 care modules, and 92% of audited care modules were fully completed.

Practice-level results

During the post-intervention focus groups, practices reported that the DCQH training and case conferences effectively standardized dementia care knowledge across interdisciplinary team members.

- “It’s truly an [interdisciplinary] team, and everybody’s really focused on: How do we become more efficient, and how do we serve our patients better, and how do we do our job better, as well as, hopefully, do our job more efficiently, so it doesn’t leak out into our personal lives? (ID 1)

- “I definitely think how we structured it really helped, too, that we really took it as like a whole team approach, um, and that it wasn’t just like one or two people doing the modules for all the patients? That we really were mindful about splitting everything as evenly as possible, and, um, you know, having people from different disciplines participate” (ID 4).

- “I think it’s good to have it standardized that everybody on your team go through them, so we’re all working with the same background” (ID 5).

- “I do feel like the meetings with the other practice were helpful. Like, I learned some pearls and tips and tricks from the < State> team, from the < City> team.”

This uniformity in training fostered a shared language and understanding of dementia care practices, promoting a more cohesive and collaborative approach to patient management. Providers noted that this alignment improved team communication and contributed to more consistent and coordinated care delivery.

In addition to improving dementia knowledge, participants reported greater clarity in team roles following curriculum implementation. The structured assessments and care module domains helped delineate responsibilities across disciplines (e.g., nursing assessment, caregiver support, medical management), reducing duplication and improving coordination. Each practice delineated and adopted curriculum responsibilities based on their own clinical workflow. Teams noted that case conferences reinforced shared expectations regarding “who addresses what” in dementia care.

Caregivers of people living with dementia expressed appreciation for having dedicated time outside of routine medical appointments to focus on dementia-specific concerns.

- “Making the time and making it personal… as far as, not only did we care for our population, but also, that we’re taking interest in them, and just going, above and beyond in a sense” (ID 7).

- “I got the sense that it made them feel like we were doing something special for them…“We’d like you to participate in this special thing…” And I got the sense, they were very appreciative.” (ID 9).

- “You know, the-the materials that you gave us, the fact that we could pick and choose and customize a little bit for the patient based on what we discussed in the, um, checklist, uh, that-that was helpful.” (ID 4).

Learners found the structured case conferences helpful for addressing questions, learning tips from other practices on managing dementia related issues in the home, and understanding each other’s workflows and bandwidth to address assessment and care module completion.

Discussion

This study demonstrates that a structured dementia care curriculum adapted for the HBPC setting can be implemented and can improve the knowledge, skills, and collaborative practices of interdisciplinary teams while enhancing support for caregivers of PLWD. The DCQH curriculum was well-received by both groups of learners, supporting its utility as a scalable model for dementia care education in non-traditional care settings.

Consistent with prior work on the Care Ecosystem and CRESCENT models, learners reported that standardized training and case conferencing helped create a shared language and collaborative approach to dementia care delivery [8, 9]. This finding reinforces the importance of team-based education in dementia care, especially in HBPC settings where team members often operate autonomously. By creating consistency across providers, the curriculum supported more integrated and efficient care delivery, a known facilitator of quality outcomes in home-based care [19].

Participants also valued the flexibility and adaptability of the care modules, which allowed providers to tailor interventions to individual caregiver needs, a key principle of person-centered dementia care [20].

Challenges to training implementation were primarily logistical, including scheduling barriers and a desire for more concise training materials. These challenges mirror findings from similar educational interventions in geriatric and dementia care, which often cite time constraints and workflow disruption as barriers to adoption [21]. Streamlining care modules and building in flexibility for delivery may further enhance uptake and sustainability across diverse practice settings.

Strengths of this study include its focus on a previously underexplored setting, home-based primary care (HBPC), and its implementation across two diverse, health-care delivery sites, one in Virginia, and one in Hawaii, allowing for insights into curriculum adaptability across varying contexts, health systems and populations. Additionally, the curriculum was open to all staff in the home-based primary care practice, both clinicians and non-clinicians, ensuring a consistent and comprehensive framework to assess outcomes on an individual learner and practice level.

Limitations include the use of self-reported data, which may introduce response bias, and the implementation in only two practices, which may limit generalizability. Future studies should incorporate objective measures of impact and expand to additional HBPC sites to further evaluate scalability and broader applicability.

This curriculum builds on existing dementia care frameworks by directly addressing the unique needs and constraints of HBPC environments. It also provides a replicable educational template for integrating structured dementia support into home-based services, where traditional primary care models may fall short. Future iterations of the curriculum should continue to adapt content and delivery based on learner feedback and explore mechanisms for broader dissemination across HBPC programs nationally.

These findings suggest the curriculum may have secondary effects on team functioning. By providing a structured framework for dementia care delivery, the program appeared to support clearer role delineation and shared workflows within interprofessional HBPC teams. Although team performance was not formally measured, improved role clarity emerged as a consistent qualitative theme.

Conclusions

The Dementia Care Quality at Home (DCQH) curriculum demonstrated that a structured, team-based educational model can successfully translate dementia care best practices into the home-based primary care setting. Learners gained confidence and competency in delivering dementia-focused interventions, and practices reported stronger interdisciplinary alignment and communication. Most importantly, caregivers experienced the benefits of tailored, structured support in managing the complex needs of PLWD. These findings support the potential of DCQH as a scalable and adaptable model for improving dementia care education in HBPC programs. Continued refinement of the curriculum based on learner feedback, and evaluation of long-term outcomes for caregivers and patients, will be critical for sustained integration and broader dissemination.

Authors' contributions

CR, BL, OS developed the curriculum and performed the training synchronously and asynchronously MS, AT completed data collection and analysis.

Funding

This work was funded by the RRF Foundation for Aging under fund number (2021 − 467).

Data availability

The datasets generated and/or analyzed during the current study are not publicly available due to the confidentiality of our study participants, but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was approved by the Massachusetts General Brigham Institutional Review Board (2022P003057) and was registered with ClinicalTrials.gov NCT05849259 on May 5th, 2023. All human participants provided verbal informed consent to participate. This study adhered to the Declaration of Helsinki protocols.

Consent for publication

Not Applicable.

Competing interests

The authors declare no competing interests.