Lived experiences of missing with dementia and pathways to care: a qualitative study of carers’ and professionals’ perspectives

Background People with dementia are at increased risk of going missing, which can lead to severe harm and distress. Despite the need for a better understanding of how to support people with dementia and their families affected, research in this area remains limited. This qualitative study explored lived experiences of families affected by missing incidents, and carers’ and professionals’ perspectives of how to improve care. Methods A multi-perspective, qualitative framework analysis approach was undertaken with purposive sampling. Topic guides were developed in consultation with carers and professionals. We conducted in-depth semi-structured interviews and a focus group with key stakeholders (n = 33), which included carers of people with dementia (n = 9), police officers (n = 6), healthcare professionals (n = 12) and researchers (n = 6). Data were interpreted using thematic analysis to identify key themes. Reflexivity was considered throughout the process. Results Five key themes were identified: (i) risk and protective factors of missing incidents, (ii) gaps in reporting and response pathways, (iii) the use of technology for preventing and responding to missing incidents, (iv) the role of communities in prevention of harm, and (v) the need for integration of services through multi-agency collaboration. Conclusion This study highlights key gaps on our national and global response to missing incidents in dementia. Understanding risk and protective factors and improving our public health response through multi-agency collaboration and clear care pathways, were considered key by stakeholders. Our findings offer actionable insights to inform future strategies and improve care for people with dementia who go missing.