Holding on while letting go: trauma and growth on the pathway of dementia care in families^†

† The first author supervised this project, and jointly developed the design with the third author. Both first and second authors were the independent auditors who robustly debated the final thematic analysis and write-up of the results and paper. The third author recruited the participants, conducted the interviews, and transcribed the data.

ABSTRACT

Objectives: Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives.

Method: This study sought subjective interpretations of nine family caregivers who experienced relinquishing their status as primary caregiver to a medical model, dementia care residential setting. Following semi-structured interviews and transcription data was analysed using interpretative phenomenological analysis.

Results: One superordinate theme, navigating ‘system’ control, overarched three subordinate themes: connecting/disconnecting, windows closing, and capacity for sensation. Navigating system control reflected participants' experience of circumnavigating a medical system fraught with hierarchical challenges inclusive of a complex maze of contradictions that appeared threatening, yet appeared comforting; authoritarian, yet often humane. For them, care of self, while advocating for a family member with dementia, required vigilance to manoeuvre a system of care that imposed its uninvited authority at will. Connection/disconnection highlights the enduring struggle for inclusivity in caregiving despite the omnipresent trauma of windows closing. Psychological growth came to these participants through an unexpected capacity for sensation which offered a unique lens to communication with the family member with dementia primarily through sensory exchange.

Conclusions: Models of dementia care and therapeutic interventions could inclusively involve dementia family caregivers who may be experiencing traumatic distress, and associated guilt, stigma, loss, and grief. Co-existing psychological wellbeing, however, is possible when family members are encouraged to transition communication to sensory awareness and exchange as windows close.

KEYWORDS:

• Interpretative phenomenological analysis (IPA)
• medical model of dementia care
• families and dementia
• trauma
• growth and psychological wellbeing

Acknowledgments

The authors would like to thank those families who generously contributed to this research.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

† The first author supervised this project, and jointly developed the design with the third author. Both first and second authors were the independent auditors who robustly debated the final thematic analysis and write-up of the results and paper. The third author recruited the participants, conducted the interviews, and transcribed the data.