Dementia Family Caregivers' Involvement and Perceived Challenges in Health Care Interactions: Informing the GUIDE...

Health care interaction tasks, such as making appointments and coordinating care, are vital but often overlooked caregiver tasks. The Guiding an Improved Dementia Experience (GUIDE) Model began in 2024 and aims to support dementia family caregivers through care coordination.

This observational study described the characteristics of dementia family caregivers and their perceived challenges in performing health care interaction tasks before the start of the GUIDE Model.

Cross-sectional nationally representative survey.

Primary family caregivers for those with probable dementia from the National Study of Caregiving (NSOC) Round 13 and the National Health and Aging Trends Study (NHATS). We also conducted subgroup analyses examining caregivers' difficulty performing health care interaction tasks.

Dementia family caregivers were asked whether they had helped with any of the nine health care interaction tasks. Only caregivers who answered yes to the task questions were asked about their difficulty performing the respective health care interaction tasks. We compared the characteristics of caregivers who performed versus did not perform these tasks, as well as those who reported any difficulty versus no difficulty.

Our study included 467 caregivers. Most (92.5%) caregivers performed at least one health care interaction task. The most frequently performed health care interaction tasks were speaking to providers (82.2%), making appointments (79.0%), and sitting in on doctor appointments (68.4%). The tasks caregivers rated as being most difficult were transitioning care after a hospital stay (58.9%), coordinating care (43.0%), and handling insurance matters (39.8%). Over half of caregivers assisting after an overnight hospital stay received post-hospital training (58.2%).

Family caregivers commonly perform health care interaction tasks, and their difficulties, particularly transitioning care after a hospital stay, should be recognized and assessed across care settings and providers in the GUIDE Model.