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. 2021 Aug 13;11(2):189-197.
doi: 10.1159/000516585. eCollection 2021 May-Aug.

Determinants of Caregiver Burden in Early-Onset Dementia

Annalisa Chiari  1 , Barbara Pistoresi  2 , Chiara Galli  1   3 , Manuela Tondelli  1   3 , Giulia Vinceti  1   4   5 , Maria Angela Molinari  3 , Tindara Addabbo  2 , Giovanna Zamboni  1   4   5   6
Affiliations

Determinants of Caregiver Burden in Early-Onset Dementia

Annalisa Chiari et al. Dement Geriatr Cogn Dis Extra. .

Abstract

Introduction: Caregivers of patients with early-onset dementia (EOD) experience high levels of burden, which is known to be affected by caregivers' psychological features as well as by patients' and caregivers' demographical and social variables. Although potential clinical, demographical, and social determinants have been separately examined, it is not known how they reciprocally interact.

Methods: Ninety-two consecutive patient-caregiver dyads were recruited from the Cognitive Neurology Clinics of Modena, Northern Italy. Caregivers were asked to fill in questionnaires regarding their burden, psychological distress, and family economic status. Data were analyzed with multivariable regression models and then entered in a mediation model.

Results: Caregiver burden was positively related to female caregiver sex, spousal relationship to the patient, severity of patient's behavioral symptoms, diagnostic delay, and financial distress of the family. It was negatively related to disease duration, patient's education, region of birth, caregiver age, number of caregiver's days off work, number of offspring, and caregiver perception of patient's quality of life. While the effect of caregiver age, diagnostic delay, and of proxies of family or social network directly impacted on caregiver's burden, the effect of patient's disease duration, being a wife caregiver, financial distress, and number of caregiver's days off work was entirely mediated by the level of caregiver psychological distress.

Conclusions: Both direct actions (such as increasing social networks and shortening diagnostic delay) and indirect actions aimed at reducing psychological distress (such as increasing the number of caregiver's days off work and financial support) should be planned to reduce caregiver's burden.

Keywords: Alzheimer's dementia; Caregiver burden; Early-onset Alzheimer's disease; Frontotemporal dementia; Young-onset dementia.

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Conflict of interest statement

The authors have no conflicts of interest to declare.

Figures

Fig. 1
Fig. 1
Graphic representation of the mediation model.
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