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Neuropsychiatric Symptoms and Caregiver Burden in Dementia: A Longitudinal Dyadic Cohort Study

Published online by Cambridge University Press:  29 January 2026

Owen Skoda ,
Miguel Conant ,
Vincent Couture ,
Marie-Andrée Bruneau ,
Marie-France Forget ,
Quoc Dinh Nguyen ,
Olena Bereznyakova  and
Philippe Desmarais Open the ORCID record for Philippe Desmarais [Opens in a new window]
Owen Skoda
Affiliation:
Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), Montréal, Canada
Miguel Conant
Affiliation:
Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), Montréal, Canada
Vincent Couture
Affiliation:
Department of Psychiatry, Division of Geriatric Psychiatry, Institut universitaire en santé mentale, Montréal, Canada
Marie-Andrée Bruneau
Affiliation:
Centre de recherche de l’Institut universitaire de gériatrie de Montréal (CRIUGM), Montréal, Canada
Marie-France Forget
Affiliation:
Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), Montréal, Canada
Quoc Dinh Nguyen
Affiliation:
Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), Montréal, Canada
Olena Bereznyakova
Affiliation:
Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), Montréal, Canada
Philippe Desmarais*
Affiliation:
Centre de Recherche du Centre Hospitalier de l’Université de Montréal (CRCHUM), Montréal, Canada Centre de recherche de l’Institut universitaire de gériatrie de Montréal (CRIUGM), Montréal, Canada
*
Corresponding author: Philippe Desmarais; Email: philippe.desmarais.1@umontreal.ca
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Abstract

Background:

Caregivers of older individuals with dementia experience substantial and enduring burden, often exacerbated by patient neuropsychiatric symptoms (NPS). Few longitudinal studies have examined how specific NPS contribute to prolonged caregiver burden.

Methods:

We conducted a 6-month prospective cohort study of 100 dyads of caregivers and older adults with Alzheimer’s disease, frontotemporal dementia and Lewy body dementia recruited from specialized neurology and geriatric clinics. Caregiver burden was assessed using the Zarit Burden Interview (ZBI), and NPS were measured with the neuropsychiatric inventory (NPI) and associated distress scale (NPI-D). Correlation analyses examined associations between baseline NPS and both concurrent and prolonged high caregiver burden.

Results:

At baseline, nearly one-third of caregivers reported moderate-to-severe burden (mean ZBI 31.4 ± 15.4), a prevalence that persisted at 6 months. Higher burden was strongly correlated with total NPI and NPI-D scores (p < 0.001). Specific symptoms – including delusions, hallucinations, agitation, anxiety, disinhibition, depression, sleep disorders and irritability – were consistently associated with greater burden. Depression, anxiety, disinhibition and sleep disturbances predicted prolonged high burden over 6 months. Sex-specific patterns emerged: psychotic symptoms and sleep disorders were more strongly associated with burden in female caregivers, whereas depression and irritability were key drivers for male caregivers.

Conclusion:

Caregiver burden in dementia is both prevalent and persistent, with NPS emerging as major correlates and predictors. Recognition of sex-related patterns may enable earlier identification of at-risk caregivers. Interventions addressing both patient NPS and caregiver coping resources could help reduce long-term distress and improve outcomes for both caregivers and patients.

Résumé

RÉSUMÉ

Les symptômes neuropsychiatriques de la démence et le fardeau des aidants et des aidantes : résultats d’une étude de cohorte, longitudinale, composée de dyades.

Contexte :

Les aidants et les aidantes de personnes âgées atteintes de démence supportent un fardeau éprouvant et durable, souvent aggravé par des symptômes neuropsychiatriques (SNP). Il existe peu d’études longitudinales sur la maniére dont certains SNP concourent au fardeau prolongé des aidants.

Méthode :

Il s’agit d’une étude de cohorte, prospective, d’une durée de 6 mois, composée de 100 dyades de personnes aidantes et d’adultes atteints de la maladie d’Alzheimer, de démence frontotemporale ou de démence à corps de Lewy, provenant de centres spécialisés en neurologie et en gériatrie. Le fardeau des aidants a été évalué à l’aide de l’Inventaire du fardeau de Zarit (ZBI), et les SNP, mesurés à l’aide de l’Inventaire neuropsychiatrique (NPI) et de l’échelle de détresse associée (NPI D). Les associations entre les SNP initiaux et la lourdeur du fardeau concomitant et prolongé des aidants ont fait l’objet d’analyses de corrélation.

Résultats :

Presque un tiers des aidants et des aidantes a fait état, au départ, d’un fardeau modéré ou lourd (score ZBI moyen : 31,4 ± 15,4), et cette proportion s’est maintenue jusqu’au bout des 6 mois. Il y avait une forte corrélation entre la lourdeur du fardeau et les scores totaux du NPI et du NPI D (p < 0,001). Par ailleurs, certains symptômes – notamment les idées délirantes, les hallucinations, l’agitation, l’anxiété, la désinhibition, la dépression, les troubles du sommeil et l’irritabilité – étaient toujours associés à un fardeau plus lourd. La dépression, l’anxiété, la désinhibition et les troubles du sommeil se sont révélés des facteurs prévisionnels de fardeau lourd et prolongé sur plus de 6 mois. Enfin, certaines caractéristiques liées au sexe se sont dégagées de l’étude : ainsi, les symptômes psychotiques et les troubles du sommeil étaient plus fortement associés au fardeau chez les aidantes, tandis que la dépression et l’irritabilité se détachaient nettement chez les aidants.

Conclusion :

Le fardeau des aidants et des aidantes dans le contexte de la démence est fréquent et durable, et les SNP sont considérés comme des corrélats et des facteurs prévisionnels importants. Par contre, la reconnaissance des différences liées au sexe pourrait faciliter le repérage précoce des aidants à risque. Enfin, les interventions qui visent à la fois les SNP chez les patients et les ressources d’adaptation chez les aidants et les aidantes pourraient réduire la détresse à long terme et améliorer les résultats tant chez les premiers que chez les seconds.

Keywords

Alzheimer’s diseasecaregiverfrontotemporal dementiaLewy body dementianeuropsychiatric symptoms

Information

Type
Original Article
Information
Canadian Journal of Neurological Sciences , First View , pp. 1 - 9
Copyright
© The Author(s), 2026. Published by Cambridge University Press on behalf of Canadian Neurological Sciences Federation

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