Pragmatic sensemaking: Mapping the cultural work of people living with dementia and their care-partners.

Authors

Corey M Abramson, Kieran L Turner, Ignacia Arteaga, Alma Hernández de Jesús, Brandi Ginn, Yuhan Nian, Daniel Dohan

Published in

Social science & medicine (1982). Volume 409. Pages 119829. Sep 21, 2026. Epub Sep 21, 2026.

Abstract

Alzheimer's disease and related dementias (ADRD) affect over 100 million people living with dementia (PLWD) and care-partners worldwide, creating intersecting challenges of brain change, social identity, and everyday routines. By examining how physiological and social dimensions intertwine, we chart implications for social scientific models and medical framings of ADRD and complex biosocial conditions more broadly.
We examine how people living with dementia (PLWD) and family care-partners make sense of, and respond to, life with dementia.
We completed a team-based multi-site ethnography across three U.S. states: 314 site visits, 117 interviews, and four years of longitudinal observation. In addition to in-depth analysis of cases and accounts, we used network visualizations to map shared understandings (cultural schema) in respondent narratives.
Participants engaged in pragmatic sensemaking: adapting available meanings to make sense of shifting challenges, rather than holding to a singular narrative of life with dementia. Four schemas were empirically central in dementia narratives: health and medicine, social cognition, social roles, and change over time. Case analyses show how people combine and reconfigure these understandings as their circumstances shift. Participants understand ADRD not as solely 'loss' or 'journey,' medical challenge or social circumstance, but as a phenomenon involving all of these, and requiring adaptive responses.
Although life with dementia can vary with wealth, biography, disease type and stage, people across divergent circumstances relied on pragmatic sensemaking, adapting available meanings to address practical and existential challenges of life alongside ADRD. Pairing computational analysis with ethnography makes this interpretive work visible and reveals patterns conventional accounts overlook, with implications for scholarship on how people respond to complex conditions like ADRD that resist reduction to purely medical or social elements.

PMID:
42801851
Bibliographic data and abstract were imported from PubMed on 28 Sep 2026.

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