Importance: Primary care practitioners (PCPs) are pivotal in the early detection and ongoing management of dementia. While the obstacles hindering optimal dementia care within primary care settings are well-documented, gaining insights into PCP perspectives is crucial. These perspectives can be instrumental in shaping values-aligned dementia care pathways, thereby reinforcing the essential role of primary care in addressing this growing health concern.
Objective: This study aimed to explore and articulate the perspectives of PCPs concerning their involvement in dementia diagnosis and subsequent care provision.
Design, Setting, and Participation: A qualitative research approach was employed, involving interviews with 39 PCPs across California. Participants included medical doctors, nurse practitioners, and doctors of osteopathic medicine. The interviews were conducted between March 2020 and November 2022, and the collected data underwent thematic analysis to identify recurring patterns and viewpoints.
Main Outcomes and Measures: The primary focus was to identify overarching themes that encapsulate PCPs’ perspectives regarding their roles and experiences in dementia care.
Results: The study involved 39 PCPs, with a demographic profile indicating that 64.1% were female and 41% were Asian. A significant majority (92.3%) reported that over half of their patient base was enrolled in MediCal, California’s Medicaid program for low-income individuals. The thematic analysis revealed six key themes that illuminate PCPs’ perspectives on their role in dementia care. These themes are:
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Serving as the Initial Point of Contact and Initiating the Diagnostic Process: PCPs see themselves as the crucial first point of contact for patients and families concerned about cognitive decline. They play a vital role in recognizing early signs and symptoms of dementia, initiating the preliminary diagnostic workup. This often involves initial cognitive assessments, gathering patient history, and ruling out other potential causes of cognitive impairment. Their accessibility and established relationships with patients make them uniquely positioned to identify and address early concerns.
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The Foundational Importance of Long-Term, Trusting Relationships: PCPs emphasized the value of the long-term, trusting relationships they build with their patients. These relationships are considered essential for effective dementia care. Trust allows for open communication about sensitive issues like cognitive changes, facilitates ongoing monitoring, and supports collaborative decision-making as dementia progresses. This continuity of care is a cornerstone of primary care and is particularly beneficial in the context of dementia’s chronic and evolving nature.
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Valuing a Holistic Understanding of Patients’ Life Contexts: PCPs highlighted the importance of understanding patients’ broader life contexts when diagnosing and managing dementia. This includes considering social, cultural, economic, and environmental factors that can influence a patient’s experience of dementia and their access to care and support. By understanding these contexts, PCPs can tailor care plans to be more patient-centered and responsive to individual needs and circumstances, moving beyond a purely biomedical approach.
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Actively Involving and Educating Families: Recognizing the significant role of family in dementia care, PCPs described their efforts to involve and educate families. This includes providing information about dementia, its progression, and available support resources. They also work to facilitate communication within families and empower family members to participate in care planning and decision-making. PCPs see family education and involvement as critical components of comprehensive dementia care.
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Coordinating and Navigating Dementia Care Pathways: PCPs play a key role in coordinating dementia care, often acting as navigators for patients and families as they move through complex healthcare and social service systems. This involves referrals to specialists, connecting patients with community resources, and advocating for their needs. However, PCPs also expressed challenges in care coordination due to system fragmentation and limited resources, highlighting the need for more integrated and accessible dementia care pathways.
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System-Level Constraints Limiting Optimal Care Delivery: Despite their commitment to providing comprehensive dementia care, PCPs frequently encounter system-level constraints that hinder their ability to deliver the care they believe is necessary. These limitations include time pressures during appointments, administrative burdens, inadequate reimbursement for complex dementia care, and a lack of readily available community-based resources. These system-level barriers create a mismatch between the values of primary care and the practical realities of dementia care delivery within current healthcare infrastructures.
Conclusions and Relevance: This qualitative study underscores a strong alignment between the core values of primary care and PCPs’ approaches to diagnosing and caring for individuals living with dementia. PCPs prioritize patient-centered care, long-term relationships, holistic understanding, family involvement, and care coordination – all of which are fundamental to effective dementia management. However, the study also reveals a significant disconnect between these values and the existing health systems infrastructure designed to support dementia care in primary care settings. Addressing system-level constraints and strengthening support for primary care in dementia diagnosis and management are crucial steps toward improving the quality of care for individuals and families affected by dementia.
