Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Version 1 : Received: 26 January 2021 / Approved: 27 January 2021 / Online: 27 January 2021 (16:15:14 CET)

A peer-reviewed article of this Preprint also exists.

Ng, C.K.; Leung, D.K.; Cai, X.; Wong, G.H. Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia. Int. J. Environ. Res. Public Health 2021, 18, 2956. Ng, C.K.; Leung, D.K.; Cai, X.; Wong, G.H. Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia. Int. J. Environ. Res. Public Health 2021, 18, 2956.

Journal reference: Int. J. Environ. Res. Public Health 2021, 18, 2956
DOI: 10.3390/ijerph18062956

Abstract

Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R2 = .56). Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.

Subject Areas

service accessibility; dementia knowledge; affordability; carer role strain; self-criticism; negative emotions

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