Background
People with early-stage dementia show varying degrees of awareness about their condition and difficulties. This has implications for their welfare, and for carers, and health professionals involved in their care. Understanding more about awareness could facilitate person-centred care. In this thesis I aimed to
explore awareness of condition, review existing measures of awareness, and develop and test a new clinical tool for assessing awareness in dementia.
Methods
Using data from the national IDEAL cohort, a cross-sectional study explored factors associated with awareness of condition. A longitudinal study
investigated changes in awareness using case-matched comparisons of people with ongoing low awareness and those who gained awareness over time. A scoping review investigated existing measures of awareness. Using findings
from the scoping review and evidence from previous awareness research I developed a new clinical interview to assess awareness, named the Healthcare
Awareness Profile Interview (HAPI). This multi-dimensional structured interview was tested for feasibility and acceptability in a small pilot study conducted by telephone or video call. The interview was finalised after consultation with clinical advisory and patient and public involvement groups.
Results
In the IDEAL cohort, awareness of condition was negatively associated with mood and perceived ability to ‘live well’. Changes in awareness were seen over a two-year period, with most people showing awareness at some timepoint. Gains in awareness of condition occurred despite the progression of cognitiveand/or functional impairment. The pilot study showed that HAPI could be administered remotely and was generally acceptable to people with dementia and carers. Resulting awareness profiles demonstrated the heterogeneity of awareness across different domains of cognitive, functional and socioemotional activities.
Conclusions
The new clinical tool HAPI shows potential for evaluating awareness in dementia. Greater understanding of variations in awareness would be valuable in supporting person-centred care for people with dementia and carers.
Alzheimer's Society