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The impact of early‐stage dementia on community‐dwelling care recipient/carer dyads’ capacity to self‐manage

Gillian Stockwell‐Smith, Wendy Moyle and Ursula Kellett

Journal of Clinical Nursing, 2019, vol. 28, issue 3-4, 629-640

Abstract: Aims and objectives To explore the impact of early‐stage dementia on care recipient/carer dyads’ confidence or belief in their capacity to manage the behavioural and functional changes associated with dementia and to access appropriate support networks. Background Living with dementia has predominantly been explored from the carer perspective and focused on the stress and burden of supporting a person with dementia. There has been a shift towards a more positive discourse to accommodate the role of self‐efficacy in supporting self‐management by people living with dementia. However, little has been reported on the dyadic experience of self‐efficacy in managing life with dementia. Design A qualitative study using an interpretive descriptive approach. Semi‐structured interviews were conducted with 13 dyads in the early stages of dementia. The collected data underwent a process of thematic analysis. The study followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist. Results Dyadic adjustment to dementia was dynamic, involving shifts between loss and adaptation. Threats to self‐efficacy, declining autonomy and stigma, were significant causes of concern for both members of the dyad. Dyadic self‐efficacy was demonstrated through recognition of and adaptation to dementia‐related changes and development of coping strategies to integrate impairment into everyday life. Conclusions Solution‐focused approaches that improve knowledge and skills enable the dyad to adjust. The considerable impact of stigma on self‐efficacy indicates that supportive disclosure strategies developed in mental health may also have a role to play in dementia interventions. Relevance to clinical practice Nurses play a significant role in advising and supporting care recipient/carer dyads with dementia, and a better understanding of the dyadic perspective provides them with essential information to support self‐management. A proactive approach including information and support, offered at the beginning of the condition/care trajectory, may have the potential to delay progression into more dependent stages.

Date: 2019
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https://doi.org/10.1111/jocn.14657

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