Establishing Ties: Descriptions of Meaningful Interactions with Health Care Providers from the Perspectives of Family Caregivers of Persons Diagnosed with Moderate to Advanced Dementia

Thesis advisor: Ellen K. MahoneyPurpose: The purpose of this study was to describe meaningful interactions with health care providers (HCPs) from the perspectives of family caregivers of persons with dementia (PWD). A secondary purpose was to understand ways in which family caregivers obtained needed information for managing uncertainty associated with providing care for a PWD. Background: Family members of PWD often assume the caregiver role, but lack preparation for the psychological and practical ramifications of caring for someone with a progressive, terminal illness (Alzheimer's Association, 2011a). Lack of preparedness for caregiving impacts well-being and quality of life throughout the caregiving experience (Lilly, Robinson, Holzman and Bottorff, 2012). Meaningful interactions with HCPs have the potential to improve preparedness and alleviate suffering of caregivers, promote caregiver well-being and positively impact treatment provided to PWD. Methods: Qualitative description was used to obtain rich, straightforward descriptions from perspectives of participants. Congruent with this approach, findings were reported with minimal inference. Results: Positive meaningful interactions with HCPs included interactive dialogue, partnering between HCPs and caregivers, and a sense of being known as individuals with unique needs. Negative meaningful interactions were characterized as lacking one or more of those components. Participants used multiple strategies to obtain information and manage uncertainty associated with caregiving. Efforts to obtain care for PWD were often complicated by challenges of a health care system that was not designed to meet the needs of PWD. Conclusions: HCPs have opportunities to improve interactions, provide support and increase preparedness for family members providing care for PWD. HCP: caregiver partnerships can improve care for PWD and mitigate stressors inherent in the caregiving role. Corrective experiences may change caregivers' perceptions and provide opportunities for HCPs to intervene, engage and partner with health care consumers. Nurses are particularly well-suited to taking a leadership role in fostering partnerships and helping to design a dementia-ready system to meet the needs of PWD and those who care for them.Thesis (PhD) — Boston College, 2014.Submitted to: Boston College. Connell School of Nursing.Discipline: Nursing