From data to dialogue in setting research priorities for Lewy body dementia

Irina Kinchin; Rachel L. Fitzpatrick; Grigorios Papageorgiou; Joseph Kane; Panagiotis Alexopoulos; Polychronis Economou; Jayne Conlon; Petya Grigorova; Ken Greaney; Iracema Leroi

doi:10.1038/s44400-025-00019-x

From data to dialogue in setting research priorities for Lewy body dementia

Irina Kinchin^*
, Rachel L. Fitzpatrick
, Grigorios Papageorgiou
, Joseph Kane
, Panagiotis Alexopoulos
, Polychronis Economou
, Jayne Conlon
, Petya Grigorova
, Ken Greaney
, Iracema Leroi

^*Corresponding author for this work

School of Medicine, Dentistry and Biomedical Sciences

Research output: Contribution to journal › Article › peer-review

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Abstract

By combining AI-assisted topic modelling and community engagement, this study aimed to advance the research landscape for Lewy body dementia (LBD). Despite being the second most common form of dementia, LBD remains under-recognized and under-researched, with greater care partner burden and poorer quality of life compared to other dementias. A multi-stage prioritization process first employed Latent Dirichlet Allocation to analyse global LBD literature (18,615 abstracts, 2006–2023), revealing an evolution from basic pathogenesis studies to advanced neuroimaging and AI applications post-2017 diagnostic guidelines. The subsequent stages involved consultation with the LBD community in Ireland through surveys, public involvement events, and consensus meetings, which identified crucial gaps in multidisciplinary approaches, prevention strategies, quality of life assessment, and palliative care. The study resulted in fifteen priority areas structured around three pillars: transdisciplinary research, lived experience, and education/information, emphasizing the development of effective diagnostic tools, quality of life frameworks, and treatment approaches.

Original language	English
Article number	19
Journal	npj Dementia
Volume	1
DOIs	https://doi.org/10.1038/s44400-025-00019-x
Publication status	Published - 04 Aug 2025

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From data to dialogue in setting research priorities for Lewy body dementia
Copyright 2025 the authors. This is an open access article published under a Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium, provided the author and source are cited.
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Cite this

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abstract = "By combining AI-assisted topic modelling and community engagement, this study aimed to advance the research landscape for Lewy body dementia (LBD). Despite being the second most common form of dementia, LBD remains under-recognized and under-researched, with greater care partner burden and poorer quality of life compared to other dementias. A multi-stage prioritization process first employed Latent Dirichlet Allocation to analyse global LBD literature (18,615 abstracts, 2006–2023), revealing an evolution from basic pathogenesis studies to advanced neuroimaging and AI applications post-2017 diagnostic guidelines. The subsequent stages involved consultation with the LBD community in Ireland through surveys, public involvement events, and consensus meetings, which identified crucial gaps in multidisciplinary approaches, prevention strategies, quality of life assessment, and palliative care. The study resulted in fifteen priority areas structured around three pillars: transdisciplinary research, lived experience, and education/information, emphasizing the development of effective diagnostic tools, quality of life frameworks, and treatment approaches.",

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AU - Papageorgiou, Grigorios

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AU - Alexopoulos, Panagiotis

AU - Economou, Polychronis

AU - Conlon, Jayne

AU - Grigorova, Petya

AU - Greaney, Ken

AU - Leroi, Iracema

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N2 - By combining AI-assisted topic modelling and community engagement, this study aimed to advance the research landscape for Lewy body dementia (LBD). Despite being the second most common form of dementia, LBD remains under-recognized and under-researched, with greater care partner burden and poorer quality of life compared to other dementias. A multi-stage prioritization process first employed Latent Dirichlet Allocation to analyse global LBD literature (18,615 abstracts, 2006–2023), revealing an evolution from basic pathogenesis studies to advanced neuroimaging and AI applications post-2017 diagnostic guidelines. The subsequent stages involved consultation with the LBD community in Ireland through surveys, public involvement events, and consensus meetings, which identified crucial gaps in multidisciplinary approaches, prevention strategies, quality of life assessment, and palliative care. The study resulted in fifteen priority areas structured around three pillars: transdisciplinary research, lived experience, and education/information, emphasizing the development of effective diagnostic tools, quality of life frameworks, and treatment approaches.

AB - By combining AI-assisted topic modelling and community engagement, this study aimed to advance the research landscape for Lewy body dementia (LBD). Despite being the second most common form of dementia, LBD remains under-recognized and under-researched, with greater care partner burden and poorer quality of life compared to other dementias. A multi-stage prioritization process first employed Latent Dirichlet Allocation to analyse global LBD literature (18,615 abstracts, 2006–2023), revealing an evolution from basic pathogenesis studies to advanced neuroimaging and AI applications post-2017 diagnostic guidelines. The subsequent stages involved consultation with the LBD community in Ireland through surveys, public involvement events, and consensus meetings, which identified crucial gaps in multidisciplinary approaches, prevention strategies, quality of life assessment, and palliative care. The study resulted in fifteen priority areas structured around three pillars: transdisciplinary research, lived experience, and education/information, emphasizing the development of effective diagnostic tools, quality of life frameworks, and treatment approaches.

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From data to dialogue in setting research priorities for Lewy body dementia

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