Dementia knowledge matters: An international Delphi consensus study

Knowledge of dementia portends appropriate diagnosis, treatment, and care, yet there is a lack of consensus about the types of knowledge that matter most for those who provide clinical and instrumental care. This study aimed to discern consensus among Australian and international dementia experts in the identification of salient knowledge about the condition. An online Delphi study was used to determine expert opinion concerning dementia knowledge over three rounds between December 2013 and March 2014. In the first round, experts provided open-ended responses to questions about dementia. In the second round, feedback was summarised into 66 discrete statements and experts were asked to rate these on the basis of importance. In the third round, experts were presented with a rank-ordered list of the 66 statements and a group median. Experts were asked to rate the statements one final time. Dementia experts (N = 19) included psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. Participants were initially purposively selected by a geriatrician and three professors of aged care. A snowball sampling approach was also employed to canvas additional experts. Rated statements were analysed for consensus and perceived importance by assessing median, interquartile range, and proportion of experts scoring above thresholds defined in published protocols. Correlation scores were calculated for each statement after the final round. Statements were categorised from very high importance to low importance. Statements of higher importance and consensus related to knowledge about daily care and quality of life. In particular, there was prevalent support for statements about person-centred approaches to care. Statements of lower importance and consensus addressed biomedical and epidemiological considerations. These results provide insights into contemporary expert understanding of dementia and highlight areas of perceived knowledge deficiency to be addressed in assessment measures. In particular, the findings suggest that there may be a growing awareness of the futility of pharmacological approaches to treatment and a turn towards elements of care that provide comfort, quality of life, and support for individual identity. This information has implications for the delivery of dementia-related education programs and knowledge assessment measures.