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    Rights statement: This is the peer reviewed version of the following article: Carter G, McLaughlin D, Kernohan WG, et al. The experiences and preparedness of family carers for best interest decision‐making of a relative living with advanced dementia: A qualitative study. J Adv Nurs. 2018;74:1595–1604. https://doi.org/10.1111/jan.13576 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/jan.13576/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.

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The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study

Research output: Contribution to journalJournal article

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<mark>Journal publication date</mark>07/2018
<mark>Journal</mark>Journal of Advanced Nursing
Volume74
Number of pages10
Pages (from-to)1595-1604
Publication statusPublished
Early online date20/04/18
Original languageEnglish

Abstract

Aim
To explore the experience and the preparedness of family carers in their caregiving role as best interest decision‐makers of a relative living with advanced dementia.

Background
The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision‐making including end‐of‐life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.

Design
Descriptive qualitative study.

Methods
During 2015 twenty semi‐structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis.

Results
Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well‐being and their experience of being a best interest decision‐maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.

Conclusion
The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs’ dementia expertise to maximize their role in facilitating best interest decision‐making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.

Bibliographic note

This is the peer reviewed version of the following article: Carter G, McLaughlin D, Kernohan WG, et al. The experiences and preparedness of family carers for best interest decision‐making of a relative living with advanced dementia: A qualitative study. J Adv Nurs. 2018;74:1595–1604. https://doi.org/10.1111/jan.13576 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/jan.13576/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.