Interventions to support informal carers managing behavioral symptoms in frontotemporal lobar degeneration: a scoping review
OBJECTIVE: Informal carers of people living with frontotemporal lobar degeneration (FTLD) face significant challenges in managing complex behavioral symptoms, yet disease specific support remains limited. This scoping review explored non-pharmacological interventions developed to support this carer population. METHODS: Database searches were conducted across Medline, APA PsycINFO, CINAHL, ERIC, E-Journals, and Scopus from January 2011 to November 2025, supplemented by hand searching, identifying nine included studies. RESULTS: Interventions broadly comprised occupational therapy-based activity programmes, psychoeducational approaches, and web-based self-management tools. The majority of studies were feasibility or acceptability studies, with findings generally positive; however, behavioral symptoms were inconsistently reported, and sample sizes were small, highlighting that evidence remains at an early stage. CONCLUSION: Despite the promising nature of existing approaches, structured implementation of non-pharmacological interventions to support informal carers manage behavioral symtoms into clinical practice remains absent. Translating feasible and acceptable interventions into accessible, disease-specific support for carers of people living with FTLD is urgently needed.
Authors
- Julieta Camino (ORCID: https://orcid.org/0000-0002-6721-8675)
- Jennifer Bedford (ORCID: https://orcid.org/0009-0004-1498-4589)
- Eneida Mioshi (ORCID: https://orcid.org/0000-0002-0066-868X)
- Ana Paula Trucco (ORCID: https://orcid.org/0000-0001-8558-2158)
Institutions
- University of East Anglia (GB)
- Motor Neurone Disease Association (GB)
Publication Details
- Journal
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
- Published
- 2026-10-15
- DOI
- https://doi.org/10.1080/21678421.2026.2741037
- Primary Topic
- Dementia and Cognitive Impairment Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- National Institute for Health and Care Research
- Department of Health and Social Care
- Motor Neurone Disease Association