Putting people at the centre of dementia diagnosis

Dementia diagnosis is not a single clinical event. It can be a prolonged journey spanning the first recognition of cognitive concerns, assessment and diagnostic disclosure to early post-diagnostic support. Yet as diagnostic technologies such as blood-based biomarkers (BBMs) and treatment options such as disease-modifying therapies (DMTs) continue to evolve, there is still limited guidance on how to ensure this journey remains person-centred.

Our recent paper in BMC Health Services Research examines how person-centred care is conceptualised and applied across the dementia diagnostic journey. We found that while person-centredness is increasingly recognised as important for creating a better experience for people navigating diagnosis and their carers, its application remains fragmented and uneven.

Where are the biggest gaps?

• Evidence on person-centredness is concentrated at specific stages of diagnosis: Assessment and diagnostic disclosure were addressed in the majority of included studies, with comparatively less focus on detection and screening and post-diagnostic support.
• Relationships and communication receive the greatest attention: Across the proposed person-centred framework, relational domains—including exchanging information, fostering relationships and addressing emotions—were the most frequently represented. Domains related to longitudinal support, such as managing uncertainty, shared decision-making and enabling self-management, received comparatively less attention.
• Barriers continue to hinder adoption: Barriers were identified at the individual, healthcare professional and system levels, including stigma and emotional distress, limited consultation time and high workloads, and fragmented pathways and poor continuity between diagnosis and ongoing support.
• The person-centred implications of emerging technologies remain underexplored: None of the included studies explicitly examined technologies such as BBMs or AI-driven assessments through a person-centred lens, despite their growing role in dementia detection and diagnosis.

Four priorities for more person-centred diagnosis

Drawing on the literature and discussions with members of Alzheimer Europe’s two dementia working groups, conducted alongside our co-authors at Alzheimer Europe and the University of Cologne, our review identified four priorities:

• Co-produce diagnostic pathways with people with dementia and their carers
• Integrate existing frameworks and clinical pathways to support person-centredness across the full diagnostic journey
• Develop person-centred standards for emerging technologies, including BBMs and AI-driven assessments
• Advance equity in diagnosis by considering factors such as language, socioeconomic circumstances, geography and cultural safety

As dementia diagnosis continues to evolve, the challenge is not only to make diagnosis timely and more accurate, but also to ensure that innovation is embedded within pathways that preserve personhood, support meaningful participation and provide continuity throughout the diagnostic journey.

Download the Full Publication Here.

Note: You can also attend the webinar, “Transforming Alzheimer’s Diagnosis: Building Pathways That Keep People at the Centre,” on December 3 at 12:30 PM CET / 6:30 AM EST, featuring a panel discussion incorporating clinical, policymaking and lived-experience perspectives on current gaps, emerging diagnostic opportunities and the changes needed to better support people seeking a diagnosis and their carers, at this link.