Exploring dental treatment decision-making experiences of people living with dementia and family carers

Abstract

Introduction: People living with dementia can have complex dental care needs. Dentists and patients should make treatment decisions together, yet some people living with dementia may be unable to make their own decisions about their dental care. Dental treatment decision-making and patients' experiences of this process have not been comprehensively researched. Objective: This study aimed to explore the dental treatment decision-making perspectives and experiences of people living with dementia and their family members. Methods: Semi-structured interviews were undertaken with 8 people living with dementia and 17 family caregivers. A constructivist grounded theory approach was adopted, using a maximum variation sample. Qualitative data collection and analysis occurred concurrently. Data underwent initial open coding followed by more focused coding, supported by reflexive memo writing, which supported data categorisation. Results: People living with dementia reported wanting to be understood as unique individuals with specific needs. All participants described wanting to be actively involved in dental treatment decisions. However, many felt that they were insufficiently involved in treatment decision-making. This perceived underinvolvement meant that some people living with dementia and family members felt the treatment outcomes they sought were neither discussed nor considered. Conclusion: People living with dementia and carers had specific expectations of dental care yet felt passive in decision-making despite their desire to be involved in this process. Dentists should seek to actively establish patients' preferences, regardless of mental capacity and consider these in discussions and decisions about dental treatment.