ArticleJournal of Alzheimer's disease : JAD2021
A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum.
Article in Journal of Alzheimer's disease : JAD, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed, 14 citations in OpenAlex.
- Experiences of Formal and Informal Support Among Adult-Daughter Caregivers of People With Dementia in Sweden: A Qualitative Study.Dementia (London, England) · 2026Article
- A Scoping Review of Dementia Research Using ALZConnected Forum Data.Western journal of nursing research · 2026Article
- Social Support and Sleep Quality Among Bereaved AD/ADRD Caregivers: A Qualitative Study.Western journal of nursing research · 2025Article
- Informal Caregivers Connecting on the Web: Content Analysis of Posts on Discussion Forums.JMIR formative research · 2025Article
- Thematic Analysis of Alzheimer's Medication Management Discussion in a Non-Moderated Online Forum.Western journal of nursing research · 2024Article
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- Understanding Barriers Along the Patient Journey in Alzheimer's Disease Using Social Media Data.Neurology and therapy · 2023Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundAs the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous.
objectiveThe objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers.
methodsPosts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes.
resultsThematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD.
conclusionOnline forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.