A critical analysis of national dementia care guidances

Abstract

Adopting an ethics and human rights lens, this paper provides a critical analysis of national dementia care guidance from countries ranked highly in providing quality of care towards the end-of-life, including Australia, Ireland, New Zealand, Switzerland, Taiwan and the United Kingdom. The aim of this paper is to determine areas of consensus and disagreement among guidance and to understand current gaps in research. Overall, studied guidances showed consensus regarding patient empowerment and engagement, promoting independence, autonomy and liberty through; establishing person-centered care plans, providing ongoing care assessment, resources and support to individuals and their family/carers. Consensus was also seen in most end-of-life care issues; re-assessing care plans, rationalizing medication, and most importantly carer support and well-being. Disagreement could be found in criteria relating to decision-making after losing capacity, i.e. through appointment of case managers or a power of attorney, reducing barriers to equitable access of care, stigma and discrimination for minority and disadvantaged groups - including younger people with dementia, medicalized care strategies such as alternatives to hospitalization, covert administration, and assisted hydration and nutrition, and also in identifying an active dying phase. Potential for future development includes a greater emphasis on multidisciplinary collaborations, financial and welfare assistance, exploring the use of artificial intelligence technologies for testing and management, while also providing safeguards against such emerging technologies and therapies.

Keywords: Dementia; Ethical analysis; Guidelines; Public health; Quality of care.