Abstract
Concern about the lack of human rights afforded to persons living with dementia has emerged in recent years. Although the literature addresses certain rights, it does not include a holistic framework of rights in terms of the lived experience of older persons with cognitive impairment. Inspired by the 20 rights advocated for children by physician-educator Janusz Korczak, this article analyzes his formulation of rights in the context of persons with dementia, linking them to the ethical principles of Beneficence, Autonomy, and Justice. The analysis thus provides a holistic framework for addressing the human rights of persons with dementia, and their meanings for the lived experiences of persons with dementia and their caregivers. It offers new insights into the philosophy and practice of care, with implications for dementia care research, public health policy, practice guidelines for health care professionals, and the instruction of family and other caregivers of persons with dementia.
Highlights
Concern about the lack of human rights afforded to persons living with dementia has emerged in recent years
Concern about the lack of human rights afforded to persons under care for dementia has emerged in recent years.1e16 Among the grievances are the use of physical restraints,[12] not honoring a patient’s right to refuse medication,[4] not facilitating supported decision making,[8] infringement of voting rights,[10] and disregard of patients’ rights to avoid peg insertion.[14]
A holistic, particular, and pragmatic framework that considers the range of specific needs of persons with dementia, their point of view, and the implications for their care is currently missing
Summary
I saw Korczak’s pragmatic and compassionate approach as an opportunity to develop a holistic and pragmatic conceptual framework for providing compassionate care to persons with dementia For purposes of this discussion, I organized Korczak’s 20 rights[22,23] into 3 ethical principles and 6 sub-categories: Beneficence, including Love and Appreciation, and Optimal Conditions; Autonomy including Respect, Being Oneself, and Self-Determination; and Justice including justice, understanding and support of persons with dementia (Table 1). To phrase these matters in terms of positive principles
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