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Centre for Policy on Ageing | |
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Rural dementia carers
— formal and informal sources of support | | Author(s) | Peter Orpin, Christine Stirling, Sharon Heterington |
| Journal title | Ageing and Society, vol 34, no 2, February 2014 |
| Publisher | Cambridge University Press, February 2014 |
| Pages | pp 185-208 |
| Source | journals.cambridge.org/aso |
| Keywords | Dementia ; Informal care ; Services ; Community care ; Rural areas ; Qualitative Studies ; Australasia. |
| Annotation | Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context in Tasmania. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and were thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's well-being meant that external social context, such as rurality, became less relevant. Overall, this study produced little evidence that the rural context was a major factor in shaping these patterns. Rather, the findings suggest participants' support usage was shaped less by external contexts than by the fundamental nature of the primary caring experience, in particular the emotionally intense, clearly bounded and inwardly focused nature of the caring relationship and the manner in which carers perceived and sought to fulfil their assumed role as the person primarily and ultimately responsible for the care and wellbeing of the PWD. While in research and practice primary carers are generally categorised along with other family, friends and community as `informal' care, the findings suggest that the role assumed and care delivered by study participants had very little in common with the roles played by other nonprofessionals involved with the carer-PWD dyad. In terms of the level of involvement, commitment, assumption of responsibility and even expertise - in the sense of a specialised knowledge and understanding of the care and management needs of the individual PWD - the care provided by these primary carers was fundamentally different from, and went well beyond, that provided by anyone else in the care team, formal or informal. A failure to acknowledge and recognise the true nature of the primary caring role and contribution can, and most likely has, led to primary carers being seen as mere adjuncts to professional care and/or as another client in need of care rather than as essential care partners. As such, they were not so much in need of release or relief from their role as the support to allow them to manage the task they have undertaken through the building of appropriate knowledge, skills, capacity and support structures. (RH). |
| Accession Number | CPA-150514001 A |
| Classmark | EA: P6: I: PA: RL: 3DP: 7Y |
Data © Centre for Policy on Ageing |
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| ...from the Ageinfo database published by Centre for Policy on Ageing. |
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