Understanding the lived experiences of family caregivers of individuals with dementia in Soweto, a South African Township

Abstract

This study was undertaken to understand South African family caregivers’ lived experiences of individuals living with dementia in a predominantly Black African township. A homogenous sample of thirty family caregivers was recruited using purposeful sampling methods and interviewed using a semi-structured approach. Reflective Thematic Analysis (RTA) yielded four broad themes: Understanding Dementia, Struggles and Sacrifice, Mental Health and Protective Factors. Findings reflect how dementia is understood by family caregivers and their community, the struggles and sacrifices that they endure, the impact of caregiving on caregiver mental health and the protective factors that enable caregivers to cope, despite their difficulties. Our findings lead to new insights regarding dementia caregiving amongst family caregivers in South Africa. First, there appears to be a shift in perception – away from a cultural/spiritual paradigm – and a lack of pressure to conform to community conceptualizations of dementia among individual caregivers. Second, dementia caregiving had a negative effect on caregiver mental health and elicited stress, anxiety and grief reactions. Third, caregivers did not feel emotionally supported and expressed not receiving any assistance with their daily practical tasks. Fourth, before receiving a diagnosis, family caregivers were viewed as the perpetrators of abuse and/or neglect against their family members with dementia, instead of individuals with dementia being stigmatized by the community due to their behavioural symptoms. Additionally, help-seeking was not hindered by fear or stigma, but was motivated by caregiver distress as dementia-related behaviours began to manifest and caregivers feared being perceived as perpetrators of abuse. Psychoeducational interventions should be tailored to targeted population groups that are in need of further training to address the lack of awareness in communities, insufficient knowledge of dementia amongst healthcare professionals and the practical, emotional and psychological difficulties that family caregivers endure to facilitate mental health care and resilience.