Caregiver Support within the Dementia Context: Best Practices in Responding to Ambiguous Loss

The purpose of this study was to use the concept of ambiguous loss as a lens to explore common challenges that family caregivers experience when caring for a loved one with dementia. This study attempted to collect qualitative data from licensed social workers who have experience working with family members and their diagnosed loved ones. Key findings made in this study include the different forms in which ambiguous loss may cause distress on behalf of caregivers: A physical presence yet psychological absence (an example of boundary ambiguity) on behalf of the diagnosed individual, the loss of future potential on behalf of spousal-caregivers, and role changes within the family system. Other findings include the tendency for caregivers to isolate themselves from outside support due to the private nature of caregiving and a possible stigma against support group attendance. Research recommendations as well as recommendations to social workers within the dementia context are also discussed. Given the relative infancy of the current research base regarding ambitious loss within the dementia context, it is important that future studies continue to examine the nuanced form of grief that individuals face when caring for a loved one with a neurodegenerative disease.