Experiences of people with dementia and their care partners: voices from an ethnically diverse sample in the Eden District of South Africa

Abstract

This thesis explores the experiences of an ethnically diverse sample of persons with dementia (PWDs) and their care partners (CPs) in the Eden District of South Africa.

The study is theoretically grounded in symbolic interactionism (Blumer, 1969) and uses the Constructivist Grounded Theory method (Charmaz, 2014) to interrogate how dementia impacts on the relationships between PWDs and CPs. This was done through considering the mechanisms of reciprocity and social connectedness. It further used concepts from the Social Exchange Theory (Homans, 1958), Convoy Model of Social Relations (Kahn & Antonucci, 1980), and the Convoy of Care Model (Kemp et al., 2012) to interpret the findings. For the past few decades, qualitative dementia research reflected mostly the perspectives of CPs and later that of PWDs. Contemporary studies have seen a shift towards examining the impact of dementia on the social and care exchanges that take place between the PWDs and those who support them. This study broadens the existing body of evidence by including the perspectives of an ethnically diverse sample of PWDs and CPs. It specifically examines participants’ views on how dementia transformed their interpersonal relationships. Participants described a progression on the continuum between social connection at first and social disconnect when the dementia became more challenging in its later stages.

Up to four repeated interviews were conducted with 18 PWDs and 30 CPs from Coloured, Black African, and White backgrounds. Following verbatim transcriptions and thematic analyses of 103 qualitative interviews, the themes of relationships and social connection emerged as central to participants’ experiences.

The findings suggested that the combined effect of four factors, namely care practice (collectivist/individualist), relationship type (exchange or communal), attitude toward exchange (exchange or non-exchange), and predominant type of reciprocity (generalised/balanced), along with disease progression, determined where the PWDs were on the continuum with socially connected at one end and socially disconnected at the other. Overall, a combination of collectivist care practices, a communal relationship type, a non-exchange orientation to social exchanges, and generalised reciprocity were deemed optimal, resulting in a slower progression on the continuum.

In this sample, the care convoys of Coloured participants were on average larger than for White participants. The sample of Black African participants was too small to compare with the other groups. Positive relationships and larger social convoys appeared to result in better psychosocial outcomes for both PWDs and their CPs.

Further research is needed to test if this continuum also reflects the lived experiences of PWDs in the nine Black African ethnic groups of South Africa. A sample that is more representative of this socio-economic background can provide further insight into possible intergroup differences.