Patterns of elderly spousal caregiving in dementia care: an observational study

Authors

  • Wallis Jansson RNT,

    1. University Lecturer, Doctoral Student, Stockholm Gerontology Research Center, and Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research, Division of Geriatric Epidemiology, Karolinska Institutet, Stockholm, Sweden.
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  • Gunilla Nordberg RN,

    1. Doctoral Student, Stockholm Gerontology Research Center, and Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research, Division of Geriatric Epidemiology, Karolinska Institutet, Stockholm, Sweden.
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  • Margareta Grafström RNT PhD

    1. Associate Professor, Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research, Division of Geriatric Epidemiology, Karolinska Institutet, Stockholm, and Institution of Caring Sciences, Mälardalen University, Sweden.
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Wallis Jansson, Stockholm Gerontology Research Center, Box 6401, SE-113 82 Stockholm, Sweden. E-mail: wallis.jansson@neurotec.ki.se

Abstract

Patterns of elderly spousal caregiving in dementia care: an observational study

Aim.  The aim of this study was to escribe which caring activities eight spouses performed when caring for a partner with dementia, and in what way these activities were carried out.

Background.  Family caregivers are recognized as being the primary source of care for the community’s older people. The largest group is comprised of spouses, with wives as the predominant caregivers. This informal care seems to be more or less invisible and performed in silence within the family. Despite the wealth of studies, the essence of family caregiving is not well understood.

Methods.  Data collection was conducted by observing the dyads in their homes. A qualitative approach inspired by grounded theory was chosen to discover qualities and describe patterns of spousal caregiving in dementia care.

Results.  The analysis yielded four broad themes, which included nine categories. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving.

Conclusion.  The elderly carers were engaged in demanding and time-consuming care ranging from supervision to heavy physical responsibility. They were caring for as well as about their partners. The study also showed that spouses were successful in managing their situation in different ways. The results reported in this article are unique as they come from direct observations in family home settings where a spouse cared for a partner with dementia. Knowledge about family caregiving is valuable for nurses as there is an emphasis on collaboration between family caregivers and professionals.

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