‘If you’ve lost your personality, there’s no point in changing the valve’—a qualitative study of older adults’ attitudes towards treatment of aortic stenosis with comorbid dementia

Abstract

Objectives Due to prognostic uncertainty and limited decision-making capacity, the choice to perform transcatheter aortic valve implantation (TAVI) in patients with severe aortic stenosis (AS) and comorbid dementia is challenging. This study explores older adults’ perspectives on complex decision-making preceding TAVI in the hypothetical setting of comorbid dementia.Design Qualitative study entailing semistructured interviews. Analysis was by systematic text condensation. The interview guide addressed their attitudes regarding treatment dilemmas before TAVI in patients living with dementia.Setting Patients were recruited from the TAVI outpatient clinic at a university hospital performing TAVI.Participants A purposive sample of 10 older adults (5 women) with AS and without dementia (range 77–94 years), where 8/10 had undergone TAVI were included.Results Three main challenges were identified: (1) Risk assessment. Participants found it hard to compare the burden of aortic stenosis vs dementia. They acknowledged the dilemma of implanting a new heart valve to achieve symptom relief while risking severe dementia in the future due to prolonged life span. (2) Autonomous capacity. A profound uncertainty was described regarding who should participate in decision-making if the person was incapacitated due to dementia. (3) Customised information. Participants advocated for thorough information describing facts and uncertainty, aiming to protect and support the person living with dementia.Conclusion Older adults with severe aortic stenosis find it hard relating to dilemmas arising from providing TAVI in patients living with dementia. There is a need for tailor-made information to support autonomy and decision-making under uncertainty.