Data collection
Our preliminary topic guide was informed by emergent findings from a rapid literature
review, workshops with health and social care professionals, carers and people with early
dementia, and by information from an ongoing cohort study within the research programme
(Sampson et al., 2016). We sought to explore service personnel’s recognition of dementia as a
life-limiting illness, the management of acute medical problems, appropriateness of
hospitalisation, the role of advance care plans and do not attempt resuscitation orders
and HCPs views of where the health and social care system is failing to meet the needs of
people with advanced dementia and their families. The researchers used emerging
information to explore significant and unanticipated issues in later interviews.