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.

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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

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article

Interventions to support informal carers managing behavioral symptoms in frontotemporal lobar degeneration: a scoping review

Julieta Camino, Jennifer Bedford, Eneida Mioshi, Ana Paula Trucco
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Dementia and Cognitive Impairment Research
article

Interventions to support informal carers managing behavioral symptoms in frontotemporal lobar degeneration: a scoping review

Julieta Camino, Jennifer Bedford, Eneida Mioshi, Ana Paula Trucco
article en

Abstract

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.

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
University of East Anglia (GB), Motor Neurone Disease Association (GB)
National Institute for Health and Care Research, Department of Health and Social Care, Motor Neurone Disease Association
Good health and well-being
Openalex Percentile: Top 13%
Dementia and Cognitive Impairment Research
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