Negotiating dementia care within informal family care networks: lived experiences from Bayelsa State, Nigeria

Abstract

The aim of this thesis is to understand how informal carers of older people with dementia negotiate everyday caregiving in Nigeria. Current literature on dementia in Nigeria has focused on dementia epidemiology, knowledge and understanding, and stigma. However, little is known about how carers negotiate dementia care. Existing literature from other countries may not be transferable to the Nigerian context due to socio-cultural differences. Therefore, it is important that approaches to supporting informal carers in negotiating dementia care are relevant and tailored to the socio-cultural context of Nigeria. Using qualitative methods, semi-structured interviews, and observations among eleven family care networks in Bayelsa State, Nigeria, were conducted. Data were analysed using reflexive thematic analysis aided by NVivo. The findings show that informal carers evaluate their caregiving and that of others by making positive and negative judgements; these judgements formed their conceptualisation of what ‘good care’ and ‘bad care’ are. Informal carers had diverse care arrangements that were either influenced by cultural scripts or were a natural extension of the previous relationship between the informal carer and the older person with dementia. Furthermore, Informal carers placed more value on support received from outside their family compared to that within their family. These findings broaden understanding of how informal carers in Nigeria negotiate everyday caregiving against the backdrop of unspoken expectations they hold of themselves, of others, and from the wider society. The findings offer two key practical and policy recommendations for healthcare organisations and the government. First, improving post-diagnostic support for older people with dementia and their carers, such as healthcare providers encouraging families to plan care, including discussions of what is expected from each member of the care network. Second, the Nigerian government should include guidelines on managing dementia in its national policy on ageing.

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ORCID for Lilian Iluobe Odaro: orcid.org/0000-0002-8575-288X

ORCID for Rosalind Willis: orcid.org/0000-0001-6687-5799

ORCID for Elisabeth Schroeder-Butterfill: orcid.org/0000-0002-5071-8710

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