Transition Experiences of Caregivers of Older Adults with Dementia and Multiple Chronic Conditions: An Interpretive Description

Abstract

Family caregivers of older persons with dementia (PWD) and multiple chronic conditions (MCC) provide high levels of in-home care. Caregiving is complicated by transitions such as changes to one's environment, roles, relationships, and overall health. Although PWD often have MCC, few studies have focused on the influence of MCC on dementia caregiving and transitions. The purpose of this study was to explore the transition experiences of caregivers of PWD and MCC. This study is a sub-study of a larger pragmatic mixed methods randomized controlled trial called MyTools4Care (MT4C). Using interpretive description methodology, semi-structured interviews were conducted across Ontario with a subset of caregivers (n=19) and clinicians working with dementia caregivers (n=7). Purposive theoretical sampling and concurrent data collection and analysis were used. Participants described their transition experiences, factors that influenced these experiences, potential outcomes of transitions, and the influence of MCC on dementia caregiving. Participants identified five key transitions which included: (a) There's no turning off (progressive increase in responsibilities); (b) I'm filling in many roles (changes in roles and relationships); (c) I'm sick, too (changes in overall health and well-being); (d) Dementia defines my social life (changes in social boundaries), and; (e) I know that day will come (changes in preparing for the future). Study findings emphasized how the co-existence of dementia and MCC resulted in added complexity and burden to care management and decision-making for caregivers. Findings suggest that health care professionals (HCP) are an important extension of caregivers' support networks. Thus, HCP need to be comfortable, trained, and knowledgeable in diagnosing and managing dementia and MCCs in order to support caregivers in their transitions. Future research should explore the experience of dementia within the broad context of MCC in order to understand the impact on the dementia caregiving experience.