A qualitative study of the processes by which carers of people with dementia derive meaning from caring

ABSTRACT

Background: Most individuals with dementia live in the community, receiving care from family or lay carers. Carers’ wellbeing, and the quality of the care they provide, partly depends on their ability to derive meaning from caring for someone with dementia. Both carers’ previous relationship with their relative and the caregiving process itself contribute to this sense of meaning. However, it remains unclear why some carers derive meaning from these sources, whereas others do not.

Objective: To further explore the processes by which carers derive a sense of meaning from caring.

Methods: Representative case sampling was used to recruit a purposive sample of 20 carers for individuals living with dementia. In-depth semi-structured interviews were audio-recorded and transcribed, and analysed using pluralist qualitative methodology.

Results: A framework of three sources from which carers derived meaning from caring was identified, encompassing: carers’ perceptions of how ‘right’ or ‘symmetrical’ caring felt in light of their current and previous relationship with the person with dementia; maintenance of a ‘protected’ sense of self within the care relationship; and carers’ perceptions of their ‘social connectedness’ outside the relationships.

Conclusion: Holistic assessment based on this framework could help to tailor individualised provision of support, foster resilience and safeguard carers’ well-being.

KEYWORDS:

• Dementia and cognitive disorders
• carers
• well-being
• meaning
• qualitative methods

Acknowledgments

We would like to thank all of the participants who kindly shared their experiences with us for the purposes of this research project, together with the administrative and clinical staff who helped to facilitate recruitment.

Disclosure statement

The authors acknowledge no financial interest or benefit arising from the direct applications of their research

Notes

1. No identifying participant information was discussed with clinical teams, but rather discussion focused on the emerging analysis.

Additional information

Funding

This work was supported by MerseyCare NHS Trust [grant number R&D Funding Scheme 2008-2009 Application 11/2012/24].