Caregiver support and burden drive intention to engage in a peer-to-peer exchange of services among caregivers of dementia patients.

Abstract

The number of people diagnosed with dementia is increasing, creating significant economic burden globally. With the progression of the disease, patients need a caregiver whose wellbeing is important for continuous care. Providing respite as a service, through sharing the responsibility of caregiving or support for the caregiver, is a costly initiative. A peer-to-peer online support platform for dementia caregivers, motivated by the sharing economy, putting exchange of knowhow, resources, and services at its center, has the potential to balance cost concerns with a search for respite. The aim of this research is to assess caregivers' intention to engage in peer-to-peer exchange. A survey including sociodemographic, technology use, and caregiving variables, structured questionnaires (Zarit caregiver burden, WHO brief quality of life scale, ADCS-ADL and chronic stress scale) were administered, January 2018-May 2019, in the dementia outpatient clinic of a university hospital, to a convenience sample of n = 203 individuals identifying themselves as primary caregivers. A path analysis exploring the drivers of an intention to engage in peer-to-peer service exchange was conducted. In the path model, caregivers experiencing higher caregiver burden showed higher intention to engage (0.079, p < 0.001). Disease stage had no effect while patient activities of daily living, chronic social role related stressors of the caregiver and general quality of life were significant for the effect on the caregiver burden. Existing household support decreased the caregiver burden, affecting the intention to engage. Caregivers who can share more know-how demonstrate a higher intention to engage (0.579, p = 0.021). Caregiver technology affinity (0.458, p = 0.004) and ability and openness to seek professional help for psychological diagnoses (1.595, p = 0.012) also increased intention to engage. The model shows caregiver burden to be a major driver, along with caregiver characteristics that reflect their technology affinity and openness to the idea of general reciprocity. Existing support for obtaining knowhow and exchanging empathy have a direct effect on the intention to engage. Given the scarcity of caregiver support in the formal care channels, the identified potential of enlarging informal support via a peer-to-peer exchange mechanism holds promise.