Progressive compensatory symbiosis: spouse caregiver experiences of caring for persons with dementia in Taiwan

Abstract

Objectives: Spouse caregivers have been the predominant family members who care for persons with dementia in Taiwan. Although studies in western countries have described the caregiving experiences and changes in the marital relationship for these spouse caregivers, this information is lacking in Taiwan. This study explored the experiences of spouse caregivers caring for persons with dementia in Taiwan.

Methods: A grounded theory approach was used for this qualitative descriptive study. Data were collected through recorded in-depth interviews and observations with 15 spouse caregivers of persons with dementia. Constant comparative analysis was used to analyse the transcripts and field notes.

Results: Analysis of interview transcripts revealed that the experiences of caregiving for spouse caregivers who lived with persons with dementia could be described as ‘progressive compensatory symbiosis.’ This core category included three components: awareness of unbalanced intimacy, making a commitment and implementing a compensatory scheme. These experiences could be either mutually beneficial or unbalanced and fluctuated as the disease progressed through the phases of ‘subtle,’ ‘revealed’ and ‘confirmed,’ which also influence the pace, transition and evolution of the compensatory symbiosis.

Conclusion: This exploratory study describes the family caregiving experiences for 15 spouse caregivers of persons with dementia in Taiwan. These results can provide guidance for developing interventions to prepare, facilitate and promote a mutually beneficial adjustment for spousal caregivers and their spouses as dementia progresses. The findings are worthy of further investigation with a larger sample and a prospective design.

Keywords:

• spouse caregiver
• dementia
• grounded theory
• Taiwanese

Acknowledgements

This work was supported by the Yuh-Ing Junior College of Health Care and Management Research Foundation (grant number: 100S-03) and Healthy Aging Research Center, Chang Gung University (grant numbers: CMRPD1B0332; EMRPD1D0261). The authors are grateful to all respondents who participated in this study.

Disclosure Statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The Yuh-Ing Junior College of Health Care and Management Research Foundation [grant number 100S-03]; Healthy Aging Research Center, Chang Gung University [grant number CMRPD1B0332], [grant number EMRPD1D0261].