Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jan-Dec:40:15333175251391571.
doi: 10.1177/15333175251391571. Epub 2025 Oct 25.

Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs

Alexandra Malia Jackson  1 , Kelly S O'Sullivan  2 , Megan Gilligan  3 , Raven H Weaver  2
Affiliations

Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs

Alexandra Malia Jackson et al. Am J Alzheimers Dis Other Demen. 2025 Jan-Dec.

Abstract

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.

Keywords: caregiving; core components; dementia; family; scoping review.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Article Selection Flow Diagram
See this image and copyright information in PMC

References

    1. Alzheimer’s Association . 2021 Alzheimer’s Disease facts and figures. Alzheimer's Dement. 2021;17(3):327-406. - PubMed
    1. Watt JA, Porter J, Tavilsup P, et al. Guideline recommendations on behavioral and psychological symptoms of dementia: a systematic review. J Am Med Dir Assoc. 2024;25(5):837-846.e21. - PubMed
    1. Bruvik FK, Ulstein ID, Ranhoff AH, Engedal K. The quality of life of people with dementia and their family carers. Dement Geriatr Cogn Disord. 2012;34(1):7-14. doi: 10.1159/000341584 - DOI - PubMed
    1. National Academies of Sciences Engineering and Medicine . Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Nat Academ Press; 2021. doi: 10.17226/26175 - DOI - PubMed
    1. Livingston G, Sommerlad A, Orgeta V, et al. Lancet international commission on dementia prevention and care. Lancet. 2017;390(10113):2673-2734. - PubMed

Publication types

LinkOut - more resources