Work

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

Year: 2025

Type: article

Abstract: INTRODUCTION: Frontotemporal dementia (FTD) is a neurodegenerative disease that often causes young-onset dementia and affects patients' behaviour and personality. Although FTD significantly burdens patients' family caregivers, their experiences with follow-up health care services remain poorly understood. AIM: In our study, we explored how family caregivers of patients with FTD have experienced follow-up health care for FTD, particularly their involvement in, influence over and support received during the pre- and post-diagnostic stages. METHODS: We conducted a narrative inquiry to explore family caregivers' experiences with follow-up health care services from their own perspectives. RESULTS: Family caregivers reported that barriers to effective, individualised follow-up health care include patients' impaired insight due to FTD symptoms, inadequate competence and coordination between levels of care, and their own limited opportunities to participate and be recognised for their knowledge and familiarity with the patients. CONCLUSION: Follow-up health care for FTD, beginning at diagnosis, should involve both health care professionals and family caregivers to ensure comprehensive support and address FTD's unique challenges. Our findings highlight the need for health care professionals to balance the patient's right to make decisions and the inclusion of family caregivers in the care process as crucial providers of person-centred care.

Source: Scandinavian Journal of Caring Sciences

DOI: 10.1111/scs.70108

Authors: Hege Rasmussen Eid, Kristin Berre Ørjasæter, Ingunn Bosnes

Institutions: Nord University, Namsos Hospital

Language: English

Topic: Dementia and Cognitive Impairment Research

Subfield: Psychiatry and Mental health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,400