A Qualitative Exploration of Caregiving in Advanced Dementia: Caregiver Perspectives on Unmet Needs in Low- and Middle-income Setting.

Objectives: The complex and varied needs that people with dementia experience as they approach the advanced stage are context-specific and often unfulfilled. Caregiving is usually family-led and at home, with limited institutional support in low- and middle-income countries like India. The beginning of advanced stages can go under-recognised in the avalanche of overall caregiving demands unique to the prolonged disease trajectory. Limited understanding exists of the unmet needs at this stage. The present study aimed to gain insight into the caregivers' experiences and unmet needs in advanced dementia. Materials and Methods: A qualitative exploratory study with semi-structured interviews was conducted. Eight bereaved primary caregivers of people with dementia who were registered in the Cognitive Disorders Clinic and approached through the recently initiated Neuropalliative care clinic in a tertiary hospital in South India were cared for at their own homes till the end and were interviewed telephonically. A semi-structured interview guide was used, but the interviews were generally participant-led. The interviews with the caregivers were transcribed and analysed manually using reflexive thematic analysis. Results: Participants acknowledged the need for comprehensive care management with a holistic approach as the disease advances. The overall theme from the caregiver interviews was Conclusion: In the absence of organised advanced care support for dementia, recognising the challenges faced by the informal caregivers and providing targeted support enhances the quality of care and acknowledges the crucial role caregivers play in facilitating a dignified and compassionate end-of-life.