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After the care journey: exploring the experiences of family carers of people living with dementia

Published online by Cambridge University Press:  03 June 2019

Sonja Jameson ,
Lynne Parkinson Open the ORCID record for Lynne Parkinson [Opens in a new window]  and
Annie Banbury
Sonja Jameson
Affiliation:
Centre for Regional Advancement of Learning, Equity, Access and Participation (LEAP), Central Queensland University, Rockhampton, Queensland, Australia
Lynne Parkinson*
Affiliation:
Centre for Regional Advancement of Learning, Equity, Access and Participation (LEAP), Central Queensland University, Rockhampton, Queensland, Australia
Annie Banbury
Affiliation:
Centre for Regional Advancement of Learning, Equity, Access and Participation (LEAP), Central Queensland University, Rockhampton, Queensland, Australia
*
*Corresponding author. Email: [email protected]
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Abstract

While the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.

Keywords

dementiacarersqualitativebereavementsupport
Type
Article
Information
Ageing & Society , Volume 40 , Issue 11 , November 2020 , pp. 2429 - 2447
Copyright
Copyright © Cambridge University Press 2019

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