The Experience of Ambiguous Loss, Grief, and Burden for Caregivers of Dementia Patients
Bethany Pecora-Sanefski, M.S.
Abstract
As part of the normal developmental process, children, spouses, and friends often become responsible for providing care for an aging loved one (Stone & Clements, 2009). Cognitive deficits related to aging (e.g. Alzheimer’s Disease, dementia) complicate this experience and caregivers of older adults commonly undergo an experience referred to as ambiguous loss (Boss, 2011). This is defined as the physical presence and psychological absence of a loved one; in other words, the individual is “there, but not there” (Boss, 2004, p. 553). Previous research examined dementia caregivers as a general group; research comparing caregivers’ experiences based on where the person with dementia (PWD) resides is almost non-existent. This study compared the experience of ambiguous loss, anticipatory grief, boundary ambiguity, family support, burden, and well-being in caregivers living with PWDs to caregivers of PWDs living elsewhere. Dementia caregivers were recruited through dementia caregiver support groups held both in-person and online. Scudellari’s Ambiguous Loss Scale, Anticipatory Grief Scale, Boundary Ambiguity for Caregivers, Perceived Social Support Questionnaire – Family Subscale, Zarit Burden Interview – Short Version, and Caregiver Well-Being Scale were administered either in-person or via mail to assess the experience of dementia caregivers based on their living situation. Results suggested that caregivers living with a PWD reported significantly higher rates of burden and lower rates of activities associated with well-being when compared to caregivers of PWDs living elsewhere. Recommendations for interventions for caregivers as well as for future research were made based on these findings.