Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.
In general populations, it has been recognised that patients play a key role in the quality of their own healthcare. However, the idea of realising patient-centred outcomes for the signing Deaf community, who experience the world in a visual way, raises some challenging issues that are rarely acknowledged. Using published research and translational health projects involving Deaf people both in the UK and internationally, this article discusses the challenges of realising patient-centred outcomes for Deaf people who are sign language users. The discussion includes an examination of: barriers to accessing healthcare for Deaf people; the impact of an insufficient acquisition of knowledge about health-related issues; Deaf people's limited fund of information; not recognising Deaf people's values and citizenship rights; and challenges in gathering Deaf people's reported outcomes. We contend that without including Deaf people in shaping the healthcare experience for them, whether at an interpersonal level of patient engagement or at a structural level, the concept of fulfilling patient-centred outcomes for Deaf people is not achievable.
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