Impact on Caregiver Burden Experienced by Informal Caregivers of Persons Living with Dementia When Supported by a Palliative Care Doula

Abstract

The incidence of dementia is increasing rapidly with nearly 7 million currently and projected to triple by 2050. As of 2020, there are 53 million informal caregivers. Twenty-four percent of these informal caregivers are caring for persons living with dementia. Informal caregivers experience an exorbitant amount of stress and strain causing decreased quality of life and less energy to provide the care needed as well as personal health issues. Predictions of increased incidence of dementia, as well as concerns for shortages of informal caregiver availability make the concern for caregiver burden a critical issue. Decreasing caregiver burden is a goal of intervention. The palliative care doula (PCD) provides one possible intervention. This paper examines the psychometric measures of five different instruments intended to quantify the level of caregiver burden experienced with and without the intervention of a relationship with a PCD. The most appropriate tool to utilize is the Zarit Burden Interview-12 for this population. Further research is needed to provide pragmatic, patient centered outcomes that will address this public health caregiving crisis.