Abstract
Studies on caregiver burden in patients with frontotemporal lobar degeneration are rare, differ methodologically and show variable results. Single center longitudinal pilot study on caregiver burden and potential risk factors in patients with behavioural variant frontotemporal dementia (bvFTD) and semantic (svPPA) and non-fluent variants (nfvPPA) primary progressive aphasia. Forty-six bvFTD, nine svPPA, and six nfvPPA patients and caring relatives were analysed for up to 2 years using the Mini-Mental State Examination as global measure for cognitive performance, Frontal Assessment Battery (frontal lobe functions), Frontal Behavioural Inventory (personality and behaviour), Neuropsychiatric Inventory (dementia-related neuropsychiatric symptoms), Barthel Index and Lawton IADL Scale (basic and instrumental activities of daily living), the Caregiver Strain Index (CSI), and in most participants also the Zarit Burden Interview (ZBI). CSI baseline sum scores were highest in bvFTD (mean ± SD 5.5 ± 3.4, median 5, IQR 6), intermediate in svPPA (2.9 ± 2.3; 3; 3.5) and low in nfvPPA (1.6 ± 2.1; 1; 2). Similar differences of caregiver burden were found using the ZBI. During follow-up, CSI and ZBI sum scores deteriorated in svPPA, not in bvFTD and nfvPPA, and correlated significantly with personality and behaviour, neuropsychiatric symptoms, caregiver age, and instrumental, but not basic activities of daily living, Mini-Mental State Examination scores or frontal lobe functions. This study reveals differences in caregiver burden in variants of frontotemporal lobar degeneration. Caregivers should be systematically asked for caregiver burden from the time of the diagnosis to provide comprehensive support in time.
Highlights
Frontotemporal lobar degeneration (FTLD) comprises a spectrum of neurodegenerative disorders characterized by atrophy of the frontal and temporal lobes and the striatum and changes in behaviour, personality, language skills, cognition and motor functions
Between 2007 and 2018 consecutive patients with behavioural variant frontotemporal dementia (bvFTD), Semantic variant primary progressive aphasia (svPPA), Non-fluent variant primary progressive aphasia (nfvPPA), progressive supranuclear palsy, corticobasal syndrome and frontotemporal dementia in association with amyotrophic lateral sclerosis as well as Alzheimer’s disease (AD) and Parkinson’s disease patients, who had been referred to the neurocognitive and movement disorder clinics of the Departments of Neurology 2 of the Kepler University Hospital and the Hospital of the Mercy Friars Linz, closely cooperating primary care centers for these diagnoses, and their carers were asked for inclusion in a longitudinal registry study (FTLA study)
The Caregiver Strain Index (CSI) was completed by all included caregivers, the Zarit Burden Interview (ZBI) only by 37 caregivers for reasons reported in the Patients and Methods section
Summary
Frontotemporal lobar degeneration (FTLD) comprises a spectrum of neurodegenerative disorders characterized by atrophy of the frontal and temporal lobes and the striatum and changes in behaviour, personality, language skills, cognition and motor functions. Several clinical and neuropathological subtypes of FTLD are differentiated (Rabinovici and Miller 2010). The behavioural variant frontotemporal dementia (bvFTD) is characterized by early behavioural impairment, personality changes and a frontal-dysexecutive syndrome progressing to dementia (Rascovsky et al 2011). BvFTD patients progressively lose social skills and daily living competence and require an increasing degree of support and care. Primary progressive aphasia (PPA) is a clinical syndrome
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