Abstract
BACKGROUND: The importance of palliative care and advance care planning in dementia is increasingly recognized. However, little is known about the distinct needs and preferences of people with young-onset dementia. AIM: To explore how people with young-onset dementia and their family caregivers experience quality of life, and how these experiences shape their views on the future, palliative care needs, and advance care planning. DESIGN: A qualitative interview study, using inductive thematic analysis. SETTING/PARTICIPANTS: Ten community-dwelling people with young-onset dementia and their family caregivers from the Netherlands. RESULTS: Four themes were found: sense of self, connection to others, acceptance versus resistance in the face of adversity, and orientation toward the future versus focus on the present. The first two themes represent the main aspects of quality of life. The third theme covers acceptance versus resistance in coping with the disease, support, and the future. The expectations of a decrease in quality of life could adversely affect the attitude toward the future and thus reduce the willingness to engage in advance care planning, which relates to the final theme. Quality of life explicitly influenced treatment decisions for those who engaged in advance care planning. CONCLUSIONS: The perception of young-onset dementia and its impact on quality of life varies among people with young-onset dementia and their family caregivers, but common values include a sense of self and connection to others. Advance care planning should be introduced as a way to protect these values and align them with palliative care goals.