BRIEF RESEARCH REPORT article
Front. Dement.
Sec. Dementia Care
This article is part of the Research TopicExploring the untapped in dementia researchView all 3 articles
Care challenges related to lack of awareness in people with dementia
Provisionally accepted
Catherine M Alexander1,2*
Linda Clare1,2,3- 1REACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical School, South Cloisters, St Luke’s Campus, EX1 2LU, Exeter, United Kingdom
- 2NIHR Applied Research Collaboration South West Peninsula, Exeter, United Kingdom
- 3NIHR Policy Research Unit in Dementia and Neurodegeneration Exeter (DeNPRU Exeter), Exeter, United Kingdom
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Introduction Person-centered care can be difficult to provide where people with dementia lack awareness of dementia-related changes. They may appear reluctant to discuss changes or unable to recognize care needs. Lack of awareness can contribute to worse outcomes for people with dementia and caregivers. However, little is known about how to manage care challenges arising from lack of awareness. Methods Stakeholder perspectives were sought about experiences around lack of awareness in people with dementia living at home. Discussion groups informed content of an online survey for informal caregivers, clinicians and homecare professionals. Additional information came from secondary analysis of interviews with people with dementia. Data were analyzed descriptively, with content analysis used to categorize qualitative information Results The survey was completed by 54 people involved in dementia care. Most had encountered lack of awareness, with 75% encountering it often or extremely often. Lack of awareness led to delays in referrals, diagnosis and starting care packages, with disagreements commonly experienced, both at home and in clinical settings. There were concerns about safety and safeguarding, and in some cases complete breakdown of care at home. Management involved a flexible and patient approach, avoiding confrontation where possible. Interview transcripts from people with dementia demonstrated how awareness affects strategies used and thinking about the future. Discussion The consultation highlighted the importance of this topic and implications for care provision. More information for the general public and educational resources for informal caregivers and professionals would improve understanding of awareness issues and sharing of effective strategies.
Keywords: Alzheimer's, anosognosia, Awareness, caregiver, Consultation, homecare, person-centered, Stakeholder
Received: 18 Dec 2025; Accepted: 02 Feb 2026.
Copyright: © 2026 Alexander and Clare. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Catherine M Alexander
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