Understanding non-traditional caregivers: protocol for a scoping review of caregiver definitions, caregiver networks...

Dementia caregiving is typically provided through a network of multiple individuals, particularly in diverse populations. Although family members of people living with Alzheimer's disease and Alzheimer's disease-related dementias, especially spouses and adult children, often assume the role of informal care partner, there is a growing number of non-traditional informal care partners (ie, non-spousal, non-biological child) given societal changes in family structure. The proposed study aims to systematically review the caregiver literature to better understand how caregivers are defined, the approaches and tools commonly used to evaluate the caregiver network and common caregiver outcome assessments that are used in clinical and research settings.

The following protocol will be conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches will be developed by health science library informationists for Medline (Ovid), Cumulative Index to Nursing and Allied Health Literature Complete (EBSCOhost), AgeLine (EBSCOhost) and APA PsycInfo (EBSCOhost) databases to identify tools, measures or approaches to the characterisation of complex caregiver networks that include non-traditional care partners (ie, step-family and non-marital romantic partners, blended families, families of origin, families of choice and family friends). In addition, we will also consider data elements from large-scale cohorts that include caregiver respondents (eg, National Health and Ageing Trends Study; National Study of Caregiving). There will be no limits set on article language, geography or publication date. Articles that are identified in languages other than English will be included if there is an English translation available. Search results will be reviewed by two independent raters for inclusion; in cases where there are discrepancies in inclusion/exclusion recommendations, the two reviewers will meet to establish consensus; a third reviewer will adjudicate when necessary. An artificial-intelligence-based software will be used to aid in extraction; these results will be double-checked by a human, and instances of discrepancies will be reviewed by a second independent rater. A narrative synthesis approach will be used to analyse the data.

Information from this review will be published in peer-reviewed journals and presented at scientific conferences, with the goal of providing future recommendations for how to define a non-traditional caregiver, the systematic assessment of caregiver networks and a summary of the most commonly used outcome measures in the caregiver literature. Given that scoping reviews of published articles are not regulated under federal regulations governing human subject research (45 CFR 46 or 21 CFR 50/56), institutional review board approval is not required.

In accordance with the Preferred Reporting Items for Scoping Review and Meta-analysis Protocols, the following protocol has been registered via https://osf.io on 19 December 2023 (registration DOI: https://doi.org/10.17605/OSF.IO/2XGSR).