Ethical issues in dementia guidelines for people with dementia and informal caregivers in Denmark: A qualitative thematic synthesis

Abstract

Numerous dementia-specific guidelines are offered to support people with dementia and their informal caregivers in dealing with dementia. However, the extent to which such guidelines address ethical issues and provide guidance for dealing with the issues has not yet been assessed. This study investigates the extent to which ethical issues are addressedin those guidelines, which ethical themes are considered and whatrecommendations are offered. We analysed Danish collected via onlinesearch engines and manual contact with relevant governmental, municipal and patient organisations from November 2020 to January 2021. To assess the scope of ethical issues in such guidelines, we devised an analytical framework using Beauchamp and Childress’s four principles of biomedical ethics and a data-processing method inspired by systematic reviews. We collected a total 653 dementia guidelines and screened them using formal inclusion criteria, such as publication year, target group and public availability. The guidelines that satisfied these criteria were screened for content related to ethical issues and recommendations. The guidelines that addressed ethical issues were then coded in NVivo 12 and analysed using thematic text analysis. In total, 59 guidelines satisfied the formal inclusion criteria. Among these guidelines, 15 addressed ethical issues, which fell into four transversal themes: (1) being open about the disease, (2) accepting help, (3) the line between dignified behaviour and overstepping boundaries and (4) decision-making and autonomy. The ethical issues addressed in Danish dementia-specific guidelines were diverse. However, the addressed issues did not represent a comprehensive spectrum of ethical issues as identified in relevant literature, and only a few guidelines contained substantial ethical content. In conclusion, this study indicates that the need for guidance on ethical issues is not being met by dementia-specific guidelines and that further research is required to provide additional ethical guidance that benefits people with dementia and their informal caregivers.

Keywords

qualitative thematic synthesis dementia guidelines ethical guidance ethical issues informal caregivers people with dementia

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