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Literature Review of Information Seeking Behaviors in Family Caregivers of People
with Dementia

Y. Kitamura, K. Watanabe, and A. Kuramoto 1
1
1
School of Nursing, Faculty of Medicine, Kagawa University, Japan
1

Background: When family caregivers observe cognitive decline in a family member they live with,
accessing information becomes challenging when they have limited contact with medical institutions
or public agencies providing relevant medical information.

Objective: To review the literature on trends in information gathering from the early cognitive decline
stages to dementia diagnosis, aiming to help the development of an information support system for
families.

Methods: We conducted a literature search using PubMed, CINAHL, MEDLINE, and Ichushi-Web
databases, yielding 163 results. Ichushi-Web employed the following Japanese keywords:
“information-seeking” AND “informal caregivers OR family caregivers ” AND “dementia OR mild
cognitive impairment OR cognitive decline.” Excluding duplicates and less relevant documents, we
selected 34 documents.

Results: No studies focused solely on cognitive decline stages without a dementia diagnosis; all
examined post-diagnosis states. Trends by age included 2 studies from the 2000s, 3 from 2010 to 2015,
13 from 2016 to 2019, and 17 from 2020 to 2023. Of these, 29 were qualitative studies, 3 interventional,
1 quantitative, and 1 mixed-methods study. All intervention and mixed-method studies were
conducted in the 2020s. All intervention studies were conducted online.

Conclusion: Information seeking by family caregivers emerged in the 2000s and surged in the early
2010s. All intervention studies were conducted online. Although research on information-seeking
behaviors among family caregivers of people with dementia has risen, all studies focused on
post-diagnosis phases, neglecting the cognitive decline stage. Future research should address
information provision during pre-dementia diagnosis.

Keywords: information seeking, dementia, mild cognitive impairment, cognitive decline, family caregiver

_____________________________________________________________________________________________________
Correspondence: Yuki Kitamura, School of Nursing, Faculty of Medicine, Kagawa University, Japan
E-mail: s23g702@kagawa-u.ac.jp

Poster Presentation Abstracts

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