Primary caregivers' experiences of caring for people living with dementia in Ghana: a phenomenological study

Abstract

Background: Dementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana.

Methods: Using a descriptive phenomenological design, we conducted in-depth interviews with primary caregivers in the Ashanti region, Ghana. A semi-structured interview guide was used as the data collection instrument. The data analysis followed Collazi's thematic analysis framework. All coding and categorization were done in NVivo-12.

Results: Five themes emerged from the analysis. These themes included (a) sacrifice of personal interests, and time commitments; (b) financial strain and negative impact on job; (c) feelings of stress and burnout; (d) experience of abuse and stigma; and (e) perceived blessing of caregiving.

Conclusion: The study's findings resonate with existing literature, highlighting the consistent struggles faced by caregivers. Sacrificing personal interests, navigating financial strains, and grappling with stress and burnout emerged as pervasive themes. We conclude that despite the negative impacts of caring for PwD, caregivers perceived their role as associated with blessings, deriving positive meaning and fulfilment from their caregiving journey. This study underscores a need to build more compassionate communities in rural settings of Ghana.

Keywords: Alzheimer’s; Caregivers; Dementia; Qualitative research.