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Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study
Sidharth Kaliappan, Chunyu Liu, Yoshee Jain, Ravi Karkar, Koustuv Saha. JMIR Aging, 2025-03-08
Topic: Risk, prevention and care in population studies
Our analysis revealed a diverse range of topics reflecting community members' varying needs and concerns of individuals affected by AD/ADRD. These themes encapsulate the primary discussions within the online communities: memory care, nursing and caregiving, gratitude and acknowledgment, and legal and financial considerations. Our findings indicated a higher prevalence of IS compared to ES. Regression models revealed that ES primarily occurs in posts relating to nursing and caring, and IS primarily occurs in posts concerning medical conditions and diagnosis, legal and financial, and caregiving at home. This study reveals that online communities dedicated to AD/ADRD support engage in discussions on a wide range of topics, such as memory care, nursing, caregiving, and legal and financial challenges. The findings shed light on the key pain points and concerns faced by individuals managing AD/ADRD in their households, revealing how they leverage online platforms for guidance and support. These insights underscore the need for targeted institutional and social interventions to address the specific needs of AD/ADRD patients, caregivers, and other family members.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Kaliappan, S., Liu, C., Jain, Y., Karkar, R., & Saha, K. (2025). Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study. JMIR Aging. https://doi.org/10.2196/68890
Vancouver
Kaliappan S, Liu C, Jain Y, Karkar R, Saha K. Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study. JMIR Aging. 2025. doi:10.2196/68890. PMID: 40324770.
BibTeX
@article{kaliappan2025-40324770,
author = {Kaliappan, Sidharth and Liu, Chunyu and Jain, Yoshee and Karkar, Ravi and Saha, Koustuv},
title = {{Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study}},
journal = {JMIR Aging},
year = {2025},
doi = {10.2196/68890},
pmid = {40324770},
url = {https://doi.org/10.2196/68890}
}
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Key findings
- Our analysis revealed a diverse range of topics reflecting community members' varying needs and concerns of individuals affected by AD/ADRD.
- These themes encapsulate the primary discussions within the online communities: memory care, nursing and caregiving, gratitude and acknowledgment, and legal and financial considerations.
- Our findings indicated a higher prevalence of IS compared to ES.
- Regression models revealed that ES primarily occurs in posts relating to nursing and caring, and IS primarily occurs in posts concerning medical conditions and diagnosis, legal and financial, and caregiving at home.
- This study reveals that online communities dedicated to AD/ADRD support engage in discussions on a wide range of topics, such as memory care, nursing, caregiving, and legal and financial challenges.
Why it matters
This analysis of online dementia communities found discussions centred on memory care, nursing and caregiving, gratitude, and legal and financial issues, with informational support more common than emotional support. It describes peer support needs and does not test any treatment, cure, or prevention.
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Study details
- Evidence strengthLow
How this study scored 37/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (JMIR Aging) |
| Journal's citation record | 0 / 4 | JMIR Aging: journal h-index 49 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 2 / 7 | Cited 7 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 2.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 3 / 6 | Cited 4.4× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 1 / 4 | Cited 7 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Koustuv Saha: h-index 32 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | University of Illinois Urbana-Champaign: institution h-index 1,439 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 2 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 40324770) |
| Free to read | 2 / 2 | Free to read |
| Total | 37 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
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