There is increasing interest in harnessing aged care residents’ perspectives to drive quality improvement in aged care homes. We conducted a systematic review of qualitative evidence including literature examining residents’ descriptions of “quality of care” in aged care homes, using database searches and screening records according to eligibility criteria. Three independent reviewers conducted quality assessment of forty-six eligible articles and performed thematic synthesis of articles’ findings. We distinguish nine key themes describing factors influencing quality care: staffing levels, staff attitude, continuity, routine, environment, decision-making and choice, dignity of risk, activities, and culture and spirituality. While many themes were consistent across studies, residents’ prioritization of them varied. Aged care home residents have differing conceptions of quality care as well as heterogeneous and dynamic needs and preferences. Care providers are best able to facilitate quality care when intentional efforts are made to recognize this and tailor delivery of services the individual residents.

Background Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of ‘boundary crossers,’ this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. Methods Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in language and in English, then translated and transcribed verbatim. The data were analyzed thematically. Results Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families’ role. Conclusions In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely under-valued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services.

The ‘family crisis’ narrative is frequently used in dementia studies to explain ethnic minority families’ pathways to health and aged care and why there is delayed dementia diagnoses in ethnic minority communities. Such narratives may obscure the family carers’ agency in negotiating services and managing personal, social and structural burdens in the lead up to diagnosis. To illuminate agency, this article describes ethnic minority families’ pathways to a dementia diagnosis using the concept of sense-making. Three case studies were drawn from 56 video interviews with family carers of older adults with dementia from Chinese, Arab and Indian backgrounds. Interviews were conducted across Australia from February to August 2018, then translated, transcribed and thematically analysed. Findings suggest families did not enter into formal care because of a crisis, instead navigating fragmented systems and conflicting advice to obtain a dementia diagnosis and access to relevant care. This experience was driven by sense-making (a search for plausible explanations) that involved family carers interpreting discrepant cues in changes to the behaviour of the person with dementia over time, managing conflicting (medical) advice about these discrepancies and reinterpreting their relationships with hindsight. The sense-making concept offers a more constructive hermeneutic than the ‘family crisis’ narrative as it illuminates the agency of carers’ in understanding changed behaviours, negotiating services and managing personal, social and structural barriers pre-diagnosis. The concept also demonstrates the need for a multimodal approach to promoting timely diagnosis of dementia in ethnic minority communities through dementia awareness and literacy campaigns as well as initiatives that address structural inequities.