Introduction: The COVID-19 pandemic posed unique challenges to informal caregiving, while also exacerbating known difficulties. In this study, we interviewed informal care partners about their positive and negative experiences of care partnering with people living with dementia during the early stages of the COVID-19 pandemic.
Objectives: We aimed to document the experiences of dementia care partners providing informal care, identifying key positive and negative experiences that may affect care partners’ wellbeing.
Methods: Two allied health professionals conducted semi-structured interviews with 26 informal carers of people living with dementia across Australia. Responses were coded based on the type of experience and its valence.
Results: Thematic analysis produced 7 negative themes: (1) Service and support availability and uptake were highly variable, (2) Informal care partners have a lot to manage, (3) Paid care has been insufficient and problematic, (4) COVID
care partnering has come at a personal cost, (5) Care partners faced tough decisions around care partnering and COVID compliance, (6) Care partners have been ignored, forgotten or undervalued, and (7) Informal care partners want paid care for people living with dementia that is high quality, communicative and connected. Seven positive themes were interpreted from the data: (1) respecting personhood; (2) connecting with virtues and values; (3) improving relationships; (4) seeking and receiving support; (5) prioritising self-care; (6) being protective and proactive; and (7) making practical changes.
Conclusion: COVID-19 placed enormous pressure on informal care partners, yet pressure was not evenly distributed and further polarised inequalities within the Australian community. Moreover, negative experiences further inflamed tensions arising from aged care crises under investigation in Australia pre-pandemic. However, in addition to negative
experiences, participants reported a range of benefits and positive experiences, many of which were unexpected and appreciated. In many instances, participants spoke of hoping that some of the positive experiences would continue once the pandemic has abated, especially closer relationships and connection with the values and virtues of themselves and their communities. Generally, negative experiences were related to integration with external parties and a cutting off from broader communities, while positive experiences were linked to more inward reflection and closer ties to more immediate networks.