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

Area of Science:

• Gerontology
• Caregiver Support
• Health Services Research

Background:

• Health care interaction tasks are crucial but often overlooked aspects of caregiver responsibilities.
• The Guiding an Improved Dementia Experience (GUIDE) Model was initiated in 2024 to provide support for dementia family caregivers.
• Care coordination is a key focus of the GUIDE Model.

Purpose of the Study:

• To describe the characteristics of dementia family caregivers.
• To identify the perceived challenges faced by caregivers in performing health care interaction tasks.
• To establish a baseline before the implementation of the GUIDE Model.

Main Methods:

• An observational, cross-sectional, nationally representative survey was conducted.
• Data were collected from primary family caregivers of individuals with probable dementia using the National Study of Caregiving (NSOC) and National Health and Aging Trends Study (NHATS).
• Subgroup analyses examined the difficulties caregivers experienced with health care interaction tasks.

Main Results:

• 92.5% of the 467 participating caregivers performed at least one health care interaction task.
• The most common tasks included speaking with providers (82.2%), making appointments (79.0%), and attending doctor appointments (68.4%).
• The most challenging tasks were care transitions post-hospitalization (58.9%), care coordination (43.0%), and insurance matters (39.8%).

Conclusions:

• Family caregivers routinely engage in numerous health care interaction tasks.
• Difficulties encountered by caregivers, particularly during care transitions, require recognition and assessment.
• The GUIDE Model should integrate strategies to address these caregiver challenges across various care settings.