Objective: To describe the co‐design process in a project that “evaluated how the key worker role can best support people living with dementia in the community setting.”Methods: People with dementia, care‐partners, aged‐care service experts, policymakers and academics utilised a co‐design process to undertake a systematic literature review and a qualitative evaluation study.Results: The development of a successful co‐design process that includes people living with dementia and their care‐partners (“consumers”) at all stages of the research process and addresses their individual needs.Conclusions: The co‐design approach utilised in this project provided support, for consumers living in the community to be fully involved in the research design, conduct and plans for dissemination and implementation of the findings. Consequently, the research outcomes are based on solid evidence and consumer need. Additionally, a successful model for supporting consumers to facilitate their involvement in all aspects of the research process, was developed.

This article explores how care homes—and, specifically, their common features such as dementia care units and locked doors and gates—impact on the human rights of people living with dementia. We suggest that congregation, separation and confinement of people living with dementia by the care home built environment constitute ‘segregation’. In the specific context of residential aged care facilities in Australia, we draw on the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’) to frame this segregation as an injustice. We focus on the rights to non-discrimination (Article 5), liberty and security of the person (Article 14), equality before the law (Article 12), accessibility (Article 9), and independent living and community inclusion (Article 19). Our analysis shows that addressing segregation must involve structural and resource reforms that are transformative in bringing about new ways of living and relating to each other. Such reforms are directed towards providing meaningful alternatives and appropriate supports to make choices from a range of alternative residency and support options, and building communities that are free from ableism, ageism and other systems of oppression that contribute to confinement and segregation.

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Introduction: People with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to dementia rehabilitation and (2) identify solutions that improve access to rehabilitation.Methods: People living with dementia (n = 5) and care partners (n = 8) and health professionals (n = 13) were recruited nationally. Experience‐based codesign across three virtual workshops was used to understand barriers and design solutions to improve access to rehabilitation treatments. Socio‐ecological analyses, using the Levesque Access to Health care framework, were applied to findings regarding barriers and to aid selection of solutions.Results: There was high attendance (92.3%) across the three workshops. Barriers were identified at a user level (including lack of knowledge, transport, cost and difficulty navigating the health, aged care and disability sectors) and health service level (including health professional low dementia knowledge and negative attitudes, inequitable funding models and non‐existent or fragmented services). Solutions focused on widespread dementia education and training, including ensuring that people with dementia and their care partners know about rehabilitation therapies and that health professionals, aged care and disability co‐ordinators know how to refer to and deliver rehabilitation interventions. Dementia care navigators, changes to Australia's public funding models and specific dementia rehabilitation programmes were also recommended.Conclusions: Barriers to accessing rehabilitation for people with dementia exist at multiple levels and will require a whole‐community and systems approach to ensure change.Patient or Public Contribution: People with living experience (preferred term by those involved) were involved at two levels within this research. A Chief Investigator living with dementia was involved in the design of the study and writing of the manuscript. People with living experience, care partners and service providers were participants in the codesign process to identify barriers and design potential solutions.

Quality of life is a critically important outcome measure in aged care. However, few studies have provided a detailed examination of what quality of life means to older adults living in residential care. In the current study, N = 43 older adults (67 to 99 years) living in six residential aged care facilities in four Australian states took part in semi-structured interviews. Participants had normal cognition through to mild /moderate cognitive impairment as measured by the PAS-Cog, were able to provide informed consent, and could participate in an interview conducted in English. Interviews were transcribed, and data was analyzed in NVivo using thematic analysis. Both physical and psycho-social aspects were identified as important for older adults’ quality of life with six key quality of life domains identified: independence, mobility, pain management, social connections, emotional well-being, and activities. More research is needed to test these domains with a more diverse sample of older adults living in residential aged care, in particular older adults from culturally and linguistically diverse communities. Such qualitative work is essential for the development of suitable quality of life measures for this population and provides valuable information to inform improvements to care practices and service provision. Some ways in which the identified quality of life domains could be used to enhance care provision are discussed.

This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.