The Right to Self-determination for those Living in Dementia Care Homes in Sweden. Current Inconsistencies in Laws, Guidelines and Practice; a Qualitative Online-based Study

Abstract

This study presents a qualitative online based study on the right to self-determination for those living in dementia care homes. The focus is on how the right to self-determination is implemented in daily practice. The research question was: is the right to self-determination actualized in daily care, and to what extent residents of dementia care homes can influence their daily life? This study also looked to explore how different situations are perceived by care home staff, and how they work to enforce the residents’ right to self-determination.

The analytical framework used for this study was based on International Human Rights Instruments, current Swedish legislation related to dementia care and principles and guidelines published by the National Board on Health and Welfare. Based on these documents two different approaches to the right to self-determination were derived: a human rights based approach that enforces the individual’s right to self-determination, and a person centered care approach that outsources responsibility of decision making, at least to some extent, to another person. The responses to the survey were analyzed by comparing them to these two identified approaches, to see how these approaches are implemented in practice.

The results supported that a division in approaches regarding issues related to the right to self-determination does currently exist within dementia care services. Based on personal preference staff of care homes may choose to act according to either of the two presented models; respecting the ultimate right to self-determination or choosing a model of assisted decision making. These contradicting practices and viewpoints lead to a precarious situation for both the staff and residents of dementia care homes, as complex moral questions are being solved based on personal preference of the individual workers.