P136: Human Rights and Quality Standards for Services in Dementia Care

Abstract

People with dementia can experience violations of fundamental human rights and impeded access to healthcare. This work builds on the World Health Organization’s good practice guidance on community mental health services by investigating the range of dementia services around the world and national/international clinical guidelines, and 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. Two scoping reviews of database and grey literature resources summarized the range of services, and clinical guidelines using content analysis. A single-round Delphi e-consultation with dementia experts was designed to evaluate each CRPD principle and collect feedback on their views about the applicability of the CRD principles.

Services in 31 countries were clustered in 7 categories: Supports and Services for families, Community centres, Community health and social outreach support, Crisis Services, Community health services, Networks of Services, Palliative/End-of-Life Care Services, and Supported living. National and international guidelines for quality practice were summarized for each service type. The CRPD principles were highly endorsed as quality standards, however as expected, given dominant practices in the field, several experts challenged the applicability 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 of human rights against abuse, neglect and discrimination. These findings provide an overview of different services and clinical recommendations for dementia care and lay the foundation for an international evaluation framework of quality practice. Future work will develop a concordant, human-rights based scheme for the evaluation of dementia services and use this to establish good practice guidance for dementia care using examples from across the globe.