Ethics and dementia: mapping the literature by bibliometric analysis

Objectives: This paper reports on a bibliometric analysis of keywords in the literature on ethics and dementia during the period 1980-2000.

Methods: Keywords were drawn from titles, abstracts and keyword fields of 14 bibliographic databases and clustered in to 19 categories. These categories were then examined for their frequency and co-occurrences. The strength of relationships between these categories is mapped using the metaphor of the 'night sky' showing constellations of issues and changes over time.

Results: Four categories appear consistently and frequently in the literature: professional care, end-of-life issues, decision-making and treatment. Other issues come and go (such as quality-of-life issues) while others appear to respond to outside events (e.g. feeding issues). The research literature is based predominantly on surveys or studies soliciting responses to predefined issues. Little research has been undertaken to establish the range of ethical issues for either family members or professionals.

Discussion: We discuss the domination of the literature by four categories of ethical issues, the new and emerging areas of ethical interest and those areas that are triggered by external events such as legal cases. We also discuss some of the limitations of the study and note some omissions in the literature.

Conclusion: During the period 1980-2000 the research literature has been dominated by surveys and studies soliciting views on predefined issues with relatively few in-depth, open-ended qualitative studies.