Exploring the lived experience of dementia in Ghana

Abstract

Objective: The aim of this study is to generate an understanding of the lived experiences of dementia in Ghana from the perspectives of people with dementia and their paid (prayer camp staff and healthcare professionals) and unpaid / family carers. Background: Ghana is one of the upper middle-income countries in the Sub-Saharan African (SSA) region. Dementia is a growing problem for the country as its relatively young population begins to age and the proportion of older people with dementia grows. Culturally, dementia is framed as a spiritual illness or deviance and with a lack of widespread and easily accessible mental health medical system in Ghana, dementia care in the country is dominated by family-based care. This has significant consequences for people with dementia both at home and when accessing the two main non-family care spaces – prayer camps and psychiatric hospitals. However, there is little research exploring the lived experience of dementia in Ghana. Method: A purposeful sampling method was used to recruit forty-six participants comprising of four participant groups - people with dementia, their family carers, prayer camp staff and healthcare professionals for this study. The study employed focus group and semi-structured interview techniques in order to elicit the participants’ understanding and experiences of living with dementia. Data were analysed using thematic analysis (Sundler et al., 2019; Braun and Clarke 2006). This was based on van Manen’s (1990) hermeneutic phenomenological analysis with the aim of trying to make sense of what it means to live with dementia. Findings: The findings were structured and described using van Manen’s (1990) hermeneutic phenomenological lifeworld perspectives – lived body, lived relation, lived time and lived space. The lifeworld is the lived or existential world as experienced in our everyday life (Dahlberg and Dahlberg, 2020). The findings indicate that dementia brings about changes and challenges to people with dementia’s experience of their lifeworld existentials and this affects their own and their carers’ shared experience of the lifeworld. It was also found that, religion, as one of the key social institutions, shapes the cultural understandings of dementia and therefore the meanings attributed to people’s lived experience of dementia in Ghana. Religion therefore remains crucial in the lives of families of people with dementia and can be simply something to hold on to amid the storm of the condition. Evidence shows that the socio-cultural understanding and the growing medicalisation of dementia in the country complement each other. People’s understandings of and responses to dementia were found to be changing. The thesis concludes with recommendations for practice and policy development and ideas for future research.