Towards establishing quality standards on human rights for services in dementia care

Abstract

BACKGROUND: People with dementia often experience violations of fundamental human rights and impeded access to healthcare. This study aims to investigate the views of experts regarding the use of the United Nations Convention on the Rights of People with Disabilities (CRPD) principles as quality standards for human rights-based care. METHODS: A single-round Delphi e-consultation with 15 dementia experts was designed to evaluate each CRPD principle and collect feedback on their views about the application of the CRPD principles in dementia care. RESULTS: The CRPD principles were fully endorsed as quality standards; however, several experts commented on the complexities of the use of CRPD principles in relation to information disclosure, capacity assessment, stakeholders' involvement in decision-making, respecting needs and preferences, holistic approaches in care practice, and protection against abuse, neglect and discrimination. CONCLUSIONS: These findings indicate the CRPD quality standards were fully applicable for people with dementia although some clarification around interpretation could assist in their use. Future research should elaborate on further points of support and guidance for dementia care providing examples of good practice from across the globe, and develop a concordant, human rights-based scheme for the implementation and evaluation of dementia services. IMPLICATIONS FOR PRACTICE: This study suggests that the CRPD can serve as a benchmark for human rights-based practices in dementia services globally that could enhance nursing care practice. Nursing staff are encouraged to consider human rights in relation to the complexities associated with people with dementia, their caregivers, and other services involved in their care.