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Background <p>Dementia is a progressive condition that disrupts not only the cognitive and functional abilities of those diagnosed but also the quality of their closest relationships. Family carers often face profound emotional, relational, and cultural challenges as they adapt to these changes. While past studies have highlighted the grief and uncertainty associated with caregiving, less is known about how relational dynamics evolve over the dementia trajectory or how cultural contexts shape this process. This study aimed to explore how family caregivers in Australia and Japan experience and navigate relational change.</p> Methods <p>We conducted semi-structured, in-depth interviews with 38 family carers of people living with dementia (18 in Australia, 20 in Japan). Participants were recruited through community organisations, carer networks, and support groups. Interviews were transcribed verbatim in the original language (English or Japanese) and translated as required. Data were analysed thematically using Braun and Clarke’s framework, with bilingual researchers ensuring cultural nuance and analytic fidelity. Rigour was supported through triangulation, peer debriefing, reflexive journaling, and adherence to the COREQ checklist.</p> Results <p>Four key themes were generated: (1) Dealing with Loss: carers described relational and personhood losses, including role reversals and the erosion of reciprocity; (2) Evolving Relational Practices: carers adapted activities, communication, and routines to sustain connection; (3) Reconciling with a Transformed Relationship: carers negotiated ambivalent states of grief, gratitude, and acceptance; and (4) Motivation to Care: carers identified drivers of care, including relational closeness, duty and reciprocity, health-related rationales, and cultural negotiation between collectivist and individualist norms.</p> Conclusions <p>Relational change is a central yet under-recognised aspect of dementia caregiving. This study builds on previous literature around the impact of dementia on carers by showing how cultural logics and caregiving motivations shape relational adaptation. These findings indicate that caregiving support may benefit from greater attention to relational wellbeing, duty, and cultural meanings attached to caregiving. Culturally responsive approaches that recognise relational continuity may contribute to improving the quality of life of both carers and people living with dementia.</p>

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Relational dynamics in dementia care: a qualitative study of Australian and Japanese family experiences

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  • 发表日期：

    2026年4月28日

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  • Xue Li,
  • Akari Kikuchi,
  • Hiroshi Ohata,
  • Yuki Inoue Nakata,
  • Takuya Niikawa

摘要

Background

Dementia is a progressive condition that disrupts not only the cognitive and functional abilities of those diagnosed but also the quality of their closest relationships. Family carers often face profound emotional, relational, and cultural challenges as they adapt to these changes. While past studies have highlighted the grief and uncertainty associated with caregiving, less is known about how relational dynamics evolve over the dementia trajectory or how cultural contexts shape this process. This study aimed to explore how family caregivers in Australia and Japan experience and navigate relational change.

Methods

We conducted semi-structured, in-depth interviews with 38 family carers of people living with dementia (18 in Australia, 20 in Japan). Participants were recruited through community organisations, carer networks, and support groups. Interviews were transcribed verbatim in the original language (English or Japanese) and translated as required. Data were analysed thematically using Braun and Clarke’s framework, with bilingual researchers ensuring cultural nuance and analytic fidelity. Rigour was supported through triangulation, peer debriefing, reflexive journaling, and adherence to the COREQ checklist.

Results

Four key themes were generated: (1) Dealing with Loss: carers described relational and personhood losses, including role reversals and the erosion of reciprocity; (2) Evolving Relational Practices: carers adapted activities, communication, and routines to sustain connection; (3) Reconciling with a Transformed Relationship: carers negotiated ambivalent states of grief, gratitude, and acceptance; and (4) Motivation to Care: carers identified drivers of care, including relational closeness, duty and reciprocity, health-related rationales, and cultural negotiation between collectivist and individualist norms.

Conclusions

Relational change is a central yet under-recognised aspect of dementia caregiving. This study builds on previous literature around the impact of dementia on carers by showing how cultural logics and caregiving motivations shape relational adaptation. These findings indicate that caregiving support may benefit from greater attention to relational wellbeing, duty, and cultural meanings attached to caregiving. Culturally responsive approaches that recognise relational continuity may contribute to improving the quality of life of both carers and people living with dementia.