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Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs
Alexandra Jackson, Kelly O’Sullivan, Megan Gilligan, Raven H. Weaver. American Journal of Alzheimer s Disease & Other Dementias®, 2025-10-01
Topic: Risk, prevention and care in population studies
Most dementia caregiver programs focus on a single caregiver, overlooking diverse caregiving networks that include family, friends, and relatives who provide care. We conducted a scoping review of family-centered dementia caregiving programs (ie, interventions with at least 2 caregivers) to (1) describe program components; (2) identify how family members are included; (3) summarize family-level measurements used and the effectiveness of family-centered programs on these outcomes; and (4) explore if and how programs are culturally adapted. We identified 36 articles and 10 programs (individual-family programs, n = 8; multi-family group programs, n = 2). Programs included similar content and effectiveness was reported by the primary caregiver and measured at the individual level. To better support diverse caregiving networks, caregiving programs may benefit from identifying core components of caregiving programs, including best practices in engaging family caregivers, acknowledging varied family structures and the fluidity in caregiving, and measuring strengths and deficits at the family-level.
Key findings
- Most dementia caregiver programs focus on a single caregiver, overlooking diverse caregiving networks that include family, friends, and relatives who provide care.
- We conducted a scoping review of family-centered dementia caregiving programs (ie, interventions with at least 2 caregivers) to (1) describe program components; (2) identify how family members are included; (3) summarize family-level measurements used and the effectiveness of family-centered programs on these outcomes; and (4) explore if and how programs are culturally adapted.
- We identified 36 articles and 10 programs (individual-family programs, n = 8; multi-family group programs, n = 2).
- Programs included similar content and effectiveness was reported by the primary caregiver and measured at the individual level.
- To better support diverse caregiving networks, caregiving programs may benefit from identifying core components of caregiving programs, including best practices in engaging family caregivers, acknowledging varied family structures and the fluidity in caregiving, and measuring strengths and deficits at the family-level.
Why it matters
This scoping review of 10 family-centered dementia caregiving programs found that most programs focus on a single caregiver and that effectiveness was reported by the primary caregiver and measured at the individual level. It does not test any treatment for dementia itself, and suggests programs may benefit from identifying core components and measuring outcomes at the family level.
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Study details
- Evidence strengthLow
How this study scored 38/100
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 (American Journal of Alzheimer s Disease & Other Dementias®) |
| Journal's citation record | 1 / 4 | American Journal of Alzheimer s Disease & Other Dementias®: journal h-index 93 (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 5 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 1.7 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 3 / 6 | Cited 3.2× 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 5 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 1 / 4 | Last-listed author Raven H. Weaver: h-index 13 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | University of Missouri: institution h-index 780 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 4 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 41138238) |
| Free to read | 2 / 2 | Free to read |
| Total | 38 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1177/15333175251391571
- PubMed: 41138238
- Original source →
- Free full text: American Journal of Alzheimer s Disease & Other Dementias® →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
APA 7th
Jackson, A., O’Sullivan, K., Gilligan, M., & Weaver, R. H. (2025). Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs. American Journal of Alzheimer s Disease & Other Dementias®. https://doi.org/10.1177/15333175251391571
Vancouver
Jackson A, O’Sullivan K, Gilligan M, Weaver RH. Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs. American Journal of Alzheimer s Disease & Other Dementias®. 2025. doi:10.1177/15333175251391571. PMID: 41138238.
BibTeX
@article{jackson2025-41138238,
author = {Jackson, Alexandra and O’Sullivan, Kelly and Gilligan, Megan and Weaver, Raven H.},
title = {{Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs}},
journal = {American Journal of Alzheimer s Disease \& Other Dementias®},
year = {2025},
doi = {10.1177/15333175251391571},
pmid = {41138238},
url = {https://doi.org/10.1177/15333175251391571}
}
Studies this one cites
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