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Open Access Research article

Hope and connection: the experience of family caregivers of persons with dementia living in a long term care facility

Wendy Duggleby1*, Dawn Schroeder1 and Cheryl Nekolaichuk2

Author Affiliations

1 Faculty of Nursing, University of Alberta, Alberta, Canada

2 Division of Palliative Care Medicine, Department of Oncology, University of Alberta, Alberta, Canada

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BMC Geriatrics 2013, 13:112  doi:10.1186/1471-2318-13-112

Published: 20 October 2013

Abstract

Background

Hope is a psychosocial resource that is essential for the psychological, spiritual, and physical well-being of family members caring for persons with dementia. A significant positive relationship has been found between hope and well-being in family caregivers of persons with dementia living in the community. However, the hope experience of family caregivers of persons living with dementia in long-term care (LTC) facilities has not been explored. The purpose of this study was to explore the hope experience of family caregivers of persons with dementia living in a LTC facility.

Methods

Twenty-three open-ended face to face interviews were conducted with 13 family caregivers of residents with dementia in a LTC facility. Family was broadly defined to include relatives and friends. Seven of these participants also reflected on their hope in diaries over a two week period. Interview transcripts and journal texts were analyzed using Thorne’s interpretive description approach.

Results

The over-arching theme was “hope and connection”. Participants lost hope and felt despair when they perceived they were unable to connect with their family member in the LTC facility. They regained their hope when a connection could be made. Several sub-themes were identified including: accepting where we are, living life in the moment, believing in something, standing together, and balancing dual worlds.

Conclusions

Hope was important and essential for family caregivers of persons with dementia residing in a LTC facility. The overarching theme of “hope and connection” underscores the importance of maintaining relationships and connection between family members and the person in LTC. Given the paucity of hope research conducted within this population, the study findings provide a foundation for future research.

Keywords:
Hope; Connection; Caregivers; Dementia