• Broader, more effective social discourse about dementia and dying is needed. • Education on early interventions and future dementia care planning is critical. • Dementia specific advance care planning and palliative care policies are required. This interpretive qualitative inquiry aimed to explore perspectives of family carers, clinicians and service providers on the issues and challenges of providing quality end-of-life care for people with advanced dementia living at home. We conducted in-depth, semi-structured interviews with 33 bereaved and current family carers and focus groups with 20 clinicians and service providers across various care settings. Thematic analysis was used to disclose meaningful insights and patterns of meaning. Six key themes were identified: Inadequate preparation, guidance and access to appropriate resources; Taboo and misunderstanding: talking about death; Dementia as a terminal illness and the role of palliative care; Key time points, critical events and decisions; Planning ahead not in reality; Family issues and dynamics. From clinicians’ and service providers’ perspectives, problems related to limited resources, poor consumer access, and skilled workforce shortages all undermined efforts to enable living and dying at home. Family carers found that conversations about death and care home admission were “too confronting” for many, hampering planning in advance. A lack of public, community and health professional awareness led to suboptimal end-of-life planning, signaling the need for all health professionals, especially community and primary care practitioners to be knowledgeable in dementia care. Addressing unique challenges that people with advanced dementia and their family carers experience requires continuity of care and coordination of multidisciplinary care services. Further research is needed to identify dementia-appropriate policies, for example adaptation of current models of advance care planning to meet the needs of this population.
Jeon et al. (Fri,) studied this question.