“You like to be in control of your own destiny to a degree, don't you?”:Conscientious autonomy and planning for future care with dementia

Background: We explored people with dementia and their family carers’ experiences of future care planning, guided by Kukla's model of conscientious autonomy. This relational autonomy concept focuses on the alignment of self-managed health-care practices with people’s authentic goals and values. It involves people adopting recommended practices for their own authentic reasons, questioning them where necessary, and being supported by the health and care system to understand their rationale and implement them effectively. Methods: In-depth interviews were conducted with 16 people recently diagnosed with dementia and 31 family carers, purposively and selectively sampled from a large research cohort on the basis of their 'conscientiousness,' using the indicator of already having had informal family conversations about future care. Data were analysed thematically using NVivo software and methods informed by interpretive grounded theory. Findings: Participants sought to feel secure by following recommended practices, manage uncertainty, avoid crises, share burdens within families, and avoid poor end-of-life experiences. However, support was often lacking. Many were unable to speak with specialists and described limited conversations with GPs, leaving them with unaddressed questions. Some described feelings of abandonment. Disease progression was commonly poorly explained, with some participants later encountering information they found confronting. Carers who continued researching the condition felt responsible but under-resourced for discussing disease progression with their relative and believed this should be undertaken by a professional. Formal processes - e.g. Lasting Power of Attorney (LPAs), advance care planning, Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) could prompt informal discussions but gaining an overview was difficult, with confusion about how they would be utilised, what information to include and apparent overlap between processes. Misunderstandings about medical and end-of-life decision-making were commonplace. Conclusion: If even those who are most conscientious about planning for future care struggle to access adequate support, others likely face greater challenges. Clearer communication, at an individual and public level, about disease progression, the practical challenges of medical and end-of-life decision-making, and palliative care options is urgently needed. Early group education sessions and communication strategies that engage with existing lay concepts and public discourse are likely to be helpful. Formal care planning processes should be clearer, more streamlined, and better aligned with the practical goals of people with dementia and their family carers.