“I Hope That the People Caring for Me Know About Me”: Exploring Person-Centred Care and the Quality of Dementia Care

Abstract

Background Person-centred care is at the core of high-quality dementia care but people living with dementia are often excluded from quality improvement efforts. We sought to explore person-centred care and quality of care from the perspectives of persons living with dementia in the community and their care partners. Methods We used a qualitative descriptive approach with in-person, semi-structured interviews with 17 participants (9 persons living with dementia and 8 care partners) from Ontario, Canada. Results Participants report that person-centred care is essential to the quality of dementia care. Three themes were identified that describe connections between person-centred care and quality of care: 1) “I hope that the people looking after me know about me”, 2) “I just like to understand [what’s happening] as we go down the road”, and 3) “But the doctor doesn’t even know all the resources that are available.” Participants perceived that quality indicators over-emphasized technical/medical aspects of care and do not entirely capture quality of care. Conclusions Persons living with dementia and their care partners provide important insights into person-centredness and quality of care. Their perspectives on “quality” may differ from clinicians and researchers. Research is needed to better integrate their perspectives in quality improvement and person-centred care.