Health Care-Related Tasks of Informal Dementia Caregivers in the U.S.: A Systematic Review with Narrative Synthesis

Health care-related tasks (e.g., making appointments, talking to providers) performed by informal caregivers caring for older adults with dementia have become increasingly common, yet the evidence on caregiving task profiles remains fragmented and has not been comprehensively synthesized. This is a systematic review with narrative synthesis of the patterns of health care-related tasks and the characteristics of caregivers who performed them. We searched PubMed, Embase, PsychInfo, Web of Science, and CINAHL databases. The identified tasks were grouped into health and medical care, advocacy and care coordination, and surrogate tasks. We also reported caregiver characteristics. We included 12 studies. Only 5 studies reported on racial and ethnic minority caregivers. Medication management was the most common health and medical care task. Only 1 study reported surrogate tasks, and 2 studies reported caregivers performing advocacy and care coordination tasks. This study is particularly timely given the recent implementation of the Centers for Medicare and Medicaid Services (CMS) Guiding an Improved Dementia Experience (GUIDE) Model, which includes caregiver support and education as core components of dementia care delivery. Systematically characterizing the health care-related tasks performed by dementia caregivers can inform the design, targeting, and evaluation of the GUIDE Model.