FAMILY CAREGIVERS’ EXPERIENCES OF DELIRIUM IN CARING FOR A PERSON WITH DEMENTIA: A QUALITATIVE DESCRIPTIVE STUDY
Open Access
- Author:
- Shrestha, Priyanka
- Graduate Program:
- Nursing
- Degree:
- Doctor of Philosophy
- Document Type:
- Dissertation
- Date of Defense:
- May 04, 2021
- Committee Members:
- Susan Loeb, Major Field Member & Dissertation Advisor
Marie Boltz, Major Field Member
Donna Fick, Chair & Dissertation Advisor
Andrew High, Outside Unit & Field Member
Lisa Kitko, Program Head/Chair - Keywords:
- delirium
delirium superimposed on dementia
family caregiving
qualitative descriptive study
experiences
preferences - Abstract:
- Background: Delirium is common and often persistent, affecting older adults across different care settings. Delirium is associated with poor outcomes not only for older adults but also for their family caregivers. Family caregivers may be necessary for preventing, continuous monitoring, recognition, and management of the symptoms of delirium in older adults with dementia, which could help alleviate the burden of delirium for both the person affected and their caregiver. There is a gap in the science related to what role family members may play in the prevention, recognition, and management of delirium in older adults with dementia, as well as their need for support, and the potential to co-design interventions that could improve the lives of the dyad. Purpose: This study explored family caregiver understanding and experiences related to delirium in caring for a person with dementia. Also, this research sought to uncover the caregiver’s preferences in terms of the need for education, support, and resources. Methods: A qualitative descriptive design was employed. Family caregivers of age 18 years and older, caregiving for older adults with dementia who experienced acute worsening of confusion were recruited from rural nursing home, assisted living facility, and community by the distribution of information recruitment flyers. Data was collected from 16 family caregivers using demographic questionnaire and semi-structured in-depth interviews focusing on family caregivers experiences and understanding of delirium as a caregiver for persons with dementia. Descriptive statistics on the demographic data were calculated and qualitative thematic analysis was used to organize and interpret the interview data to search for patterns and themes. Results: Seven themes emerged after the analysis of interview data. The family caregiver's understanding and experiences related to delirium while caregiving for older adults with dementia included distressing sentiments, the unexpected manifestation of delirium, unfamiliarity with delirium, changing roles, complexities of delirium and dementia management, longing for support, and caregiving during the pandemic. Conclusions: Findings from this study uncovered the challenges faced by family caregivers in balancing the care needs relating to pre-existing dementia, while simultaneously identifying and managing delirium in their care recipients at home. This study illuminated the potential role of family caregivers in recognizing, preventing, and managing delirium in their care recipients. However, caregiver experiences should be valued and necessary education and support throughout the caregiving process should be provided to promote family caregivers’ well-being and to boost their confidence and effectiveness in their caregiving role.