Building collaborative relationships with family caregivers of hospitalized older persons with delirium superimposed on dementia: A qualitative study

AIMS: To explore experiences of family caregivers providing support to older persons with delirium superimposed on dementia in acute care hospitals, their role in detection and management of this condition, and support they require. DESIGN: This study has an exploratory-descriptive design using interpretive description methodology. METHODS: Semi-structured interviews were conducted with nine caregivers from January to April 2020. Interview transcripts underwent thematic analysis. FINDINGS: Three themes were identified: (1) family caregivers found delirium superimposed on dementia to be an overwhelming experience, (2) family caregivers can play an important role in the detection and management of delirium superimposed on dementia and (3) family caregivers' experiences were influenced by the nature of their relationship with the health care team. Family caregivers found the experience distressing and felt unprepared to face the condition. Family caregivers also possessed knowledge helpful in detecting acute changes and caring for the older person. Family caregivers' relationships with the health care team varied: some felt supported by the team, while others experienced a power imbalance, characterized by lack of communication and opportunities to participate in care. CONCLUSIONS: Family caregivers were distressed to see family members hospitalized with delirium superimposed on dementia. Family caregivers are also ideally positioned to detect the condition and participate in care. However, power imbalances remain, leaving family caregivers feeling disempowered and believing the health care team had more control over the older person's care. IMPACT: Findings highlight the need for strategies to address the distress and disempowerment experienced by family caregivers of hospitalized older persons with delirium superimposed on dementia. By building collaborative relationships, nurses and other health care team members can help family caregivers navigate the complex experience with delirium superimposed on dementia and reduce distress, with the ultimate goal of facilitating family caregivers' ability to care for older persons in the community. NO PATIENT OR PUBLIC CONTRIBUTION: While the study participants are members of the public, this population was not involved in the study design and analysis. This method aligns with interpretive description, where researchers are not just a medium through which participants speak, but also interpretive instruments who discern insights not accessible to persons who may be familiar with only a single case.