“Just a Heads Up, My Father Has Alzheimer’s”: Changes in Communication and Identity of Adult Children of Parents with Alzheimer’s Disease

ABSTRACT

Alzheimer’s disease is the most common type of dementia, accounting for 60–80 percent of cases. The disease causes devastating impairment and often loss of cognitive and relational functioning for the individual and creates disorder and chaos for the family system. Even when not stepping into the formal role of caretaker, children of parents with Alzheimer’s disease experience increased vulnerability to physical and psychological illness, changes in family roles, and uncertainty about navigating a relationship with a parent they no longer know. In the present study, I sought to understand, through the lens of identity and identity-work, how adult children of parents with the disease perceived that their communication with and about the parent changed. Data from interviews with 12 adult children, none of whom were formal caregivers to their parents with the illness but all reported experiencing shifts in their identity and roles as a child of a parent with the disease, revealed four significant communication changes: communicating with a parent who was the same but different, communicating in multiple roles, correcting or reprimanding the parent, and managing parent’s private information. I discuss these findings, their implications, practical suggestions from the data, and suggested areas of future research.

Acknowledgments

I would like to thank Emma Lipka, Tyler Eilts, Erin Link, and Haley Thompson for their assistance with this project. A version of this manuscript was presented at the 2018 annual meeting of the National Communication Association. I want to also acknowledge my grandma who currently lives with Alzheimer’s disease and my dad, mom, aunts, and grandpa who navigate this challenging terrain daily.