In a very moving and insightful essay published in Vogue last week, Bruce Willis’ daughter Tallulah Willis writes about her experience as a family member of someone with dementia. This experience is shared by millions of families in the U.S. — and the numbers of people with dementia will continue to rise for the foreseeable future. Typically, many people with dementia rely on single caregivers. But the disease affects most family members, as well as family dynamics. Tallulah, 29, illustrates these impacts as she details how her famous father’s diagnosis of frontotemporal dementia has changed her.
Willis’ dad, the star of movies like “Die Hard” and “Armageddon,” has long symbolized peak masculinity in Hollywood. His muscular silhouette has been a pop culture mainstay for decades. But on a day she says changed her life forever, Willis writes that she finally realized even her “big, strong dad” could no longer protect her.
On a day she says changed her life forever, Willis wrote that she finally realized even her “big, strong dad” could no longer protect her.
The progressive decline in both physical and cognitive function that occurs with dementia fundamentally changes the affected person. The characteristics that define an individual are slowly lost — family members can describe this as losing their relative one day at a time. But the sadness of this loss can be tempered by redefining relationships. Willis describes how she has reprioritized the role of her family in her life. She also has changed her role in the family, becoming a care partner who provides comfort to her father. These adjustments are critical for the survival of the family unit.
And survival can be hard. Cognitive deficits rob the individual of the ability to work and earn income, to manage household tasks, such as financial or household management, and to make family decisions. Early in the disease, this can cause significant frustration as persons with dementia are…
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