Intervention is Urgently Needed to Address Poor Awareness of South Asian Family Caregivers for Dementia Care: A Qualitative Study

Abstract

Introduction: “The National Dementia Strategies” in Canada emphasizes improving the knowledge of formal and informal caregivers for better care for the person living with dementia. Aim: This study aimed at exploring awareness and the attitudes of South Asian Bangladeshi family caregivers towards dementia care. Methods: It was purposive sampling and a qualitative study. The study included 45 family caregivers (>55 years) for the face-to-face interviews in Toronto, Ontario. The study used semi-structured questions. The duration of the data collection was between February and March 2020. Results: The study included the three areas related to dementia, such as a) the awareness of dementia, b: awareness of prevention and treatment as well as the awareness of caregivers about what is needed for better dementia care, and c) attitudes of caregivers towards dementia care. Many caregivers described dementia as memory loss and forgetfulness. According to the caregivers, anxiety, depression, and aging were the risk factors of dementia. The caregivers commonly perceived dementia as an unpreventable and incurable disease. Moreover, many caregivers did not know about the appropriate health providers who diagnosed and treated dementia, and they were not aware of non-pharmacological care of dementia. The caregivers perceived dementia as a shameful disease. They would not go for diagnosis if they had risks for dementia and would hide their dementia after diagnosis. Many caregivers confessed that training was essential to improve knowledge about dementia, but they did not want to be a caregiver for the person living with dementia. Conclusion: The South Asian Bangladeshi family caregivers had not enough awareness about dementia, prevention, and treatment. Dementia was associated with shame, and they had less interest in dementia care. Urgent educational training is needed in their language to improve knowledge, reduce stigma, engage them in dementia care, and achieve the goals of the National Dementia Strategies.