Family Caregivers' Experiences With Follow-Up Healthcare for Frontotemporal Dementia: A Narrative Inquiry

Area of Science:

• Neuroscience
• Gerontology
• Public Health

Background:

• Frontotemporal dementia (FTD) is a neurodegenerative condition impacting behavior and personality, often leading to early-onset dementia.
• Family caregivers experience significant burdens, yet their perspectives on follow-up healthcare services are under-researched.

Purpose of the Study:

• To explore family caregivers' experiences with follow-up healthcare for frontotemporal dementia.
• To understand caregiver involvement, influence, and support during pre- and post-diagnosis stages.

Main Methods:

• A narrative inquiry approach was employed.
• The study focused on the perspectives of family caregivers of FTD patients.

Main Results:

• Caregivers identified barriers including patient's impaired insight, insufficient professional competence, and poor care coordination.
• Limited opportunities for caregivers to participate and be recognized for their patient knowledge were reported.

Conclusions:

• Follow-up care for FTD should integrate healthcare professionals and family caregivers from diagnosis.
• Balancing patient autonomy with caregiver inclusion is crucial for effective, person-centered care.