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 rarely fully aware of the level of their deficit, often thinking that nothing is wrong. Family members have to become very creative in efforts to “keep the peace,” preserving the dignity of their relative while balancing the practical need to take over roles and responsibilities. Caregiver support groups and professional organizations can be particularly helpful to family members in navigating these difficult transitions.
Challenges occur both within the narrow time frame of getting through a single day and in sustaining caregiving across years. One major challenge is the nature of the disease, particularly on a day-to-day basis, which Willis accurately characterizes as quick and unpredictable. These characteristics make dementia caregiving particularly difficult, as almost constant surveillance is required to keep someone with dementia safe. Many hazards appear suddenly, from unsafe situations in the kitchen and the bathroom to becoming lost in the community.
The 24-hour-a-day constancy of dementia caregiving is incredibly draining. And relief for the primary caregiver is critical.
Family members’ being present in a positive and helpful way is key to supporting their relative with dementia, as well as the primary caregiver. Persons with dementia are notorious for daily performance variation, “rising to the occasion” and performing at higher levels of function in situations of social pressure, such as talking to their children over phone or media. This can lead to confusion and second-guessing. Visiting in person or maintaining frequent video/phone contact, however, can help family members fully understand the daily and long-term challenges. They can also inform how family members maintain their relationships with the affected family member and fruitfully support the caregiver.
The 24-hour-a-day constancy of dementia caregiving is incredibly draining. And relief for the primary caregiver is critical.
Willis speaks eloquently about this dynamic. Being with her father also allowed her to savor actions as seemingly simple as holding his hand — a very effective way to show love for a person with dementia. She also describes the importance of memories in managing the emotional challenges of slowing losing someone. It is important to both save memories in a way that can be recalled and to share those memories with the affected person. Sharing the past provides the person with dementia with parts of cognition that are often preserved and can be especially effective in connecting in a meaningful way.
I applaud Willis’ essay and her willingness to share her experience. She describes her dad pre-diagnosis as "cool and charming and slick and stylish and sweet and a little wacky." And I have seen families withdraw and give up “outside life” to protect the dignity of their relatives who have changed. But while dignity is a laudable goal, so is allowing someone living with dementia to continue to engage in enjoyable community occasions and family events. And I feel confident Bruce would agree.