Transitional care needs of persons with dementia and their care partners: a secondary analysis using Transitions Theory

Technical Summary: Transitional Care Needs of Persons with Dementia and Their Care Partners

Problem Statement
Persons with dementia (PWD) and their care partners navigate a complex trajectory of multidimensional care transitions that extend beyond simple transfers between healthcare settings (e.g., home to hospital). Current transitional care interventions often focus narrowly on setting changes and rely on specialized services, limiting their integration into routine care. Furthermore, existing research frequently overlooks the broader illness trajectory, including the transition from pre-diagnosis to end-of-life care, and the specific, often unanticipated, shifts in roles and responsibilities (such as becoming a primary decision-maker) that occur throughout the disease progression. There is a critical need to identify the broader, theory-driven transitional care needs of PWD and care partners to inform interventions that can be integrated into standard healthcare practice.

Methodology
This study is a secondary qualitative directed content analysis of de-identified data from a parent study examining hospice and end-of-life care transitions in home healthcare.

• Participants: The analysis included 20 care partners (average age 52.7, 80% female) of 21 persons with dementia (PWD). Care partners were racially and ethnically diverse, with 60% being adult children of the PWD. The PWD cohort had moderate to severe dementia (mean QDRS score 20.4) and diverse diagnoses, including Alzheimer's disease and vascular dementia.
• Data Collection: Semi-structured interviews were conducted between October 2023 and January 2024 at NYU and VNS Health.
• Analytical Framework: The study utilized Transitions Theory (Meleis et al., 2000) as the guiding conceptual framework. The analysis followed a framework analysis approach involving five steps: (1) data familiarization, (2) framework identification, (3) indexing data to the framework, (4) charting indexed data, and (5) mapping and interpreting patterns.
• Refinement of Theory: The researchers adapted the original Transitions Theory model to better fit the dementia context. Specific modifications included removing the "transition time span" component and collapsing subcomponents within "process indicators" and "outcome indicators" to enhance analytic fit. Concepts of "awareness" and "engagement" were merged, and certain pattern descriptors were removed.
• Rigor: Trustworthiness was established through reflexivity (the first author is both a nursing professional and a family caregiver), peer debriefing, authentic representation of participant voices via verbatim quotations, and systematic documentation of the coding process.

Key Results
The analysis identified five major themes describing the transitional care needs and experiences of PWD and care partners:

1. Multiplicity and Complexity of Transitions: Transitions are rarely singular events. They involve overlapping developmental (aging, role shifts from child to parent), health-illness (diagnosis, comorbidities, functional decline), situational (social isolation, loss of support networks), and organizational (moving between care settings) transitions. These often occur simultaneously and influence one another.
2. Transitions Occur in Unanticipated Ways: Despite care partners' efforts to anticipate change, the dementia trajectory is characterized by unpredictable daily fluctuations and critical events (e.g., rapid functional decline). Transitions are often abrupt, making it difficult for care partners to interpret signs or prepare adequately.
3. Challenging Transition Conditions: The experience is shaped by personal, relational, and systemic constraints.
   • Personal: Caregiving burden competes with employment, parenting, and the care partner's own health issues.
   • Relational: Strained care networks, family conflict, and isolation force care partners to make decisions alone.
   • Systemic: Rigid eligibility criteria, fragmented services, administrative burdens, and staffing shortages in healthcare systems create barriers to smooth transitions.
4. Challenging Decision Making in Transitions: Care partners face significant moral distress and emotional crises while making decisions.
   • They strive to honor patient autonomy and wishes, often prioritizing quality of life over quantity of life.
   • Decision-making is complicated by the PWD's fluctuating cognition and lack of feedback, leading to self-doubt and feelings of "abandoning oneself."
   • Cultural and generational differences within families further complicate consensus and care coordination.
5. Critical Supports for Healthy Transitions: Care partners identified specific needs to navigate these challenges effectively:
   • Anticipatory Guidance: Clear, trusted information about what to expect and available services (e.g., hospice eligibility, waivers).
   • Care Network Facilitation: Support in coordinating family and professional resources.
   • Psychosocial Support: Assistance in managing the emotional toll, ambivalence, and moral distress of caregiving.
   • Community Linkage: Access to a central contact or coordinator to navigate complex systems and connect with resources like day programs and respite care.

Significance and Claims
The paper claims that applying Transitions Theory to dementia care reveals that transitions are not merely logistical events but are socially, culturally, and structurally situated processes. The study extends previous research by highlighting the layered and overlapping nature of transitions that care partners experience throughout the entire illness trajectory, rather than just at specific care setting boundaries.

The authors argue that current transitional care models are insufficient because they often fail to address the multiplicity and unpredictability of dementia transitions. The study posits that effective interventions must move beyond counseling or care management to include:

• Integrated anticipatory guidance that acknowledges uncertainty.
• Facilitation of care planning that respects patient preferences and cultural contexts.
• Active psychosocial support to address caregiver moral distress and ambivalence.
• Systematic community linkage to reduce the burden of self-directed resource navigation.

By refining the Transitions Theory framework to include dementia-specific conditions and indicators (such as the interplay of cultural norms and systemic constraints), the study provides a conceptual basis for developing practical, routine-care-integrated interventions. The authors conclude that transitional care in dementia requires a shift from managing discrete events to supporting continuous, value-driven adaptation for both the person with dementia and their care partner.