Exploring healthcare experiences from perspectives of dementia care triads: a longitudinal qualitative study with people living with dementia, their carers and their health care professionals

Introduction People living with dementia often receive limited post-diagnostic healthcare. Guidelines suggest involving family members (carers), creating a dementia care triad including the person living with dementia, their carer and their health care professional. Changes to healthcare delivery due to the COVID-19 pandemic impacted this dynamic. This thesis aims to further understanding of the functioning of dementia care triads, including triadic relationships and how dementia care can best be delivered within a triad in a pandemic/post-pandemic era. Methods A systematic review and thematic synthesis were conducted to synthesise the findings of qualitative studies involving the dementia care triad. Next, 30 people living with dementia, 31 carers and seven healthcare professionals were recruited for three longitudinal interviews, three months apart between May 2020 and March 2021. A total of 127 semi-structured interviews were conducted remotely, and analysed using thematic analysis. Findings The systematic review revealed factors influencing the workings and relationships of the dementia care triad. Findings from the qualitative study included how previous relationships influenced triadic healthcare interactions, requiring a balance of the autonomy of the person living with dementia and the involvement of their carer, often navigated by the healthcare professional. Additional themes emerged regarding living with dementia during a pandemic, including the worsening of symptoms due to reduced social engagement and potential additional strain for carers. Remote healthcare did not always involve all members of the triad, but was improved when this was achieved, although face to face consultations were greatly preferred. Conclusion Best practice post-diagnostic dementia care involves all members of the triad, and requires understanding between each member regarding, for example, their forms of involvement and expectations. This is especially important for remote healthcare consultations. Strengthening the dementia care triad can further improve dementia care outcomes