Person-centredness in dementia diagnosis & detection: a scoping review

Abstract Background Person-centred care (PCC) is widely recognized as a cornerstone of high-quality care for people with Alzheimer’s disease and related dementias (ADRD), yet its application during the diagnostic process remains poorly defined, with prior research focusing on long-term dementia management rather than the diagnostic journey. We aimed to examine how PCC is conceptualized and applied across the dementia diagnostic journey, identify strategies supporting person-centred diagnosis, and highlight gaps in the literature. Methods We conducted a scoping review of peer-reviewed literature published between 1990 and 2025 across six databases. Studies were included if they conceptualized dementia diagnosis using established PCC frameworks or clearly articulated definitions. Data on study characteristics, conceptual approaches, person-centred practices, and barriers and enablers were extracted and mapped to the Person-Centred Care and Support (PCCS) framework. Findings were shared and discussed with members of two working groups including people with dementia and informal carers. Results We included 23 publications spanning conceptual/perspective, qualitative, quantitative and mixed-methods designs. Conceptualizations varied: 52.2% cited established theory-driven frameworks, while 47.8% described person-centredness primarily in practical clinical terms. Most studies addressed assessment (73.9%) and disclosure (60.9%), whereas fewer examined detection and screening (43.5%) or post-diagnostic support (34.8%). Mapping findings to the recently proposed PCCS framework for dementia care revealed that relational domains (e.g., exchanging information, fostering relationships) were prioritized over managing uncertainty, shared decision-making, and enabling self-management. Barriers were reported at the person (e.g., stigma), healthcare worker (e.g., time pressure), and system (e.g., fragmented pathways) levels. Few studies incorporated lived experience in developing recommendations or addressed emerging diagnostic technologies such as blood-based biomarkers or AI-driven assessments. Conclusion Despite increasing attention to person-centred dementia diagnosis, the literature remains limited and conceptually unclear, with greater emphasis placed on initial clinical encounters than on longitudinal support across the diagnostic journey. As such, guidance on operationalizing person-centred principles throughout the diagnostic process remains sparse for individuals, informal carers, clinicians, and health systems. This review provides preliminary guidance and highlights the need for unified frameworks spanning the full diagnostic journey. Moving forward, diagnostic models and pathways should be co-produced with people with dementia and their informal carers, while person-centred standards should guide the integration of emerging diagnostic technologies and support culturally safe and equitable implementation across diverse populations and care settings.

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Publication Details

Journal
BMC Health Services Research
Published
2026-09-09
DOI
https://doi.org/10.1186/s12913-026-15544-5
Primary Topic
Dementia and Cognitive Impairment Research
Type
article
Field-Weighted Citation Impact
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article

Person-centredness in dementia diagnosis & detection: a scoping review

Charles P. Khoury, Dianne Gove, Frank Jessen, Matthew Guo et al.
BMC Health Services Research
Dementia and Cognitive Impairment Research
article

Person-centredness in dementia diagnosis & detection: a scoping review

Charles P. Khoury, Dianne Gove, Frank Jessen, Matthew Guo, Ana Diaz, Youssef H. El-Hayek, Ryan E. Wiley
article en

Abstract

Abstract Background Person-centred care (PCC) is widely recognized as a cornerstone of high-quality care for people with Alzheimer’s disease and related dementias (ADRD), yet its application during the diagnostic process remains poorly defined, with prior research focusing on long-term dementia management rather than the diagnostic journey. We aimed to examine how PCC is conceptualized and applied across the dementia diagnostic journey, identify strategies supporting person-centred diagnosis, and highlight gaps in the literature. Methods We conducted a scoping review of peer-reviewed literature published between 1990 and 2025 across six databases. Studies were included if they conceptualized dementia diagnosis using established PCC frameworks or clearly articulated definitions. Data on study characteristics, conceptual approaches, person-centred practices, and barriers and enablers were extracted and mapped to the Person-Centred Care and Support (PCCS) framework. Findings were shared and discussed with members of two working groups including people with dementia and informal carers. Results We included 23 publications spanning conceptual/perspective, qualitative, quantitative and mixed-methods designs. Conceptualizations varied: 52.2% cited established theory-driven frameworks, while 47.8% described person-centredness primarily in practical clinical terms. Most studies addressed assessment (73.9%) and disclosure (60.9%), whereas fewer examined detection and screening (43.5%) or post-diagnostic support (34.8%). Mapping findings to the recently proposed PCCS framework for dementia care revealed that relational domains (e.g., exchanging information, fostering relationships) were prioritized over managing uncertainty, shared decision-making, and enabling self-management. Barriers were reported at the person (e.g., stigma), healthcare worker (e.g., time pressure), and system (e.g., fragmented pathways) levels. Few studies incorporated lived experience in developing recommendations or addressed emerging diagnostic technologies such as blood-based biomarkers or AI-driven assessments. Conclusion Despite increasing attention to person-centred dementia diagnosis, the literature remains limited and conceptually unclear, with greater emphasis placed on initial clinical encounters than on longitudinal support across the diagnostic journey. As such, guidance on operationalizing person-centred principles throughout the diagnostic process remains sparse for individuals, informal carers, clinicians, and health systems. This review provides preliminary guidance and highlights the need for unified frameworks spanning the full diagnostic journey. Moving forward, diagnostic models and pathways should be co-produced with people with dementia and their informal carers, while person-centred standards should guide the integration of emerging diagnostic technologies and support culturally safe and equitable implementation across diverse populations and care settings.

BMC Health Services Research
University of Cologne (DE), Alzheimer Europe (LU)
Peace, Justice and strong institutions
Openalex Percentile: Top 10%
Dementia and Cognitive Impairment Research
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