Exploring Workload among Informal Caregivers of Persons with Dementia

Abstract

Background: An estimated 5.3 million Americans are currently living with Alzheimer’s Disease or related dementias (Association 2015). Healthcare delivery for persons with Alzheimer’s Disease or related dementias (PwD), involves both the formal (e.g., physicians, social workers) and informal (e.g., family members, neighbors) work of healthcare. Informal caregiving for PwD totals approximately 18 billion hours of work per year and costs up to 217.7 billion dollars per year in caregiving costs, lost productivity and medical and institutional care (Association 2015). Informal caregivers must execute complex tasks in a dynamic environment often without the necessary information, resources, and training (Allegri, Sarasola et al. 2006, Gitlin, Kales et al. 2012). In addition, informal caregiving requires a physical, emotional, psychological, financial and temporal commitment from the informal caregiver. The confluence of these circumstances has the potential to influence the demands experienced by informal caregivers and the capacity to meet those demands. As informal caregivers increasingly take on healthcare tasks that were previously performed by trained professionals, it is important to understand how the workload experienced by informal caregivers and how it affects caregiving performance. Objective: To explore workload among informal caregivers of PwD to identify the influencers of capacity and demand and understand the interaction between capacity, demand, and caregiver burden. Method: We conducted in-depth semi-structured interviews (N=9) with informal caregivers of PwD to explore the workload among informal caregivers using qualitative thematic analysis. The interview questions related to the understanding of: 1) work performed by informal caregivers 2) strategies, tools, and resources used by informal caregivers 3) unmet needs related to caregiving work and 4) the environment in which the caregiving occurred. Results: We found three overarching themes related to caregiver workload: (1) informal caregiving demands surpass the capacity of any individual informal caregiver; (2) informal caregivers experienced dynamic workload that increased over time (i.e., as the disease progressed) forcing informal caregivers to seek assistance from other formal and informal caregiving resources; and (3) training, information, and resource scarcity is associated with informal caregiver work overload. Conclusions: Our results suggest that informal caregivers experience dynamic workload that increases over time, and that cannot be sustained by one person. Although informal caregivers were able to develop strategies to support workload, due to the progressive nature of the disease, specific strategies were not typically useful over time.