Box 1.

Decisions and preferences made by carers.

Decision topic chosen when answering the DCS for single decision

‘Changes in care’ (n = 16)

‘Everyday wellbeing of the person dementia’ (n = 5)

‘Healthcare tests and medication’ (n = 3)

‘Eating and drinking’ (n = 2)

Preferences made by carers

‘Using power of attorney’ (n = 1), ‘avoid hospital admission’ (n = 1), ‘accept hospital admission but with no ventilator’ (n = 1), ‘move to care home’ (n = 6), ‘arrange respite’ (n = 1), ‘no more solid food’ (n = 1), ‘feed by hand’ (n = 1), ‘quality over quantity for food’ (n = 1), ‘cancel health insurance’ (n = 1) ‘sell individual’s house’ (n = 1), ‘provide personal care closer to bedroom (mobility issues)’ (n = 1), ‘not to visit during COVID-19 lockdown’ (n = 1), ‘DNAR’ (n = 1), ‘not to involve or stop care agency’ (n=1), ‘not to move into a care home’ (n=1), ‘care at home’ (n = 1), ‘live in carer’ (n = 1), ‘paid carers at home’ (n = 1), ‘keep same carer’ (n = 1), ‘live in carer’ (n=1), ‘stop carer agency’ (n = 1)