Keywords
dementia
informal caregiving
lived experiences
qualitative research
South Africa
How to Cite
Abstract
Introduction
Dementia is a progressive neurodegenerative syndrome that imposes substantial physical, psychological, social, and economic burdens on informal family caregivers. In South Africa, these challenges are compounded by a scarcity of formalized support systems, cultural misconceptions, and limited healthcare resources.
Purpose
This study examined the lived experiences of family caregivers of older adults living with dementia in Pretoria, South Africa.
Methods
A qualitative descriptive and contextual design using a phenomenological approach was adopted. In-depth, semi-structured interviews were conducted with 20 purposively selected informal family caregivers of older adults diagnosed with dementia. Data were analyzed manually using Braun and Clarke's thematic analysis framework to generate overarching themes and subthemes.
Results
Four major themes emerged: (1) Knowledge, Perceptions, and Pathways to Diagnosis, capturing initial ignorance, cultural stigma, and diagnostic delays; (2) Multidimensional Caregiving Demands and Behavioral Challenges, highlighting 24-hour supervision, physical strain, and neuropsychiatric symptoms; (3) Psychosocial, Occupational, and Economic Disruption, describing chronic emotional distress, employment loss, and severe financial strain; and (4) Coping Mechanisms and Support Systems, illustrating the reliance on spiritual resilience, family solidarity, and a critical need for institutional respite and healthcare backing.
Conclusion
Informal dementia caregiving in South Africa involves profound multi-systemic strain balanced by cultural and spiritual resilience. Developing targeted community education campaigns, nurse-led support groups, and structured institutional respite programs is essential to safeguard caregiver well-being and optimize patient care outcomes.
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