Bruce Willis‘ wife has revealed the ‘wake-up call’ that forced her to rethink her husband’s dementia care.
The Die Hard actor, 70, announced in 2023 that he was diagnosed with frontotemporal dementia (FTD), a form of dementia that causes a gradual decline in the areas of the brain linked to personality and language abilities.
While the star has mostly stayed out of the spotlight since his diagnosis, wife Emma Heming Willis and other family members provide occasional updates on his condition.
This week, Heming Willis appeared on the HealSquad podcast with actress Maria Menounos to discuss caring for her husband.
She said Willis’ neurologist warned her of a grim statistic: about 30 percent of caregivers die before their loved ones.
This could be because 40 percent of caregivers don’t schedule their own medical appointments because they don’t have enough support to care for their loved one.
Chronic stress from caregiving can also exacerbate pre-existing conditions by triggering the body’s ‘fight-or-flight’ response, which leads to inflammation, high blood pressure and an increased risk of heart attack.
Heming Willis said: ‘I really needed to hear that to wake up.
‘We are making appointments for everyone, handling, doing this. We are doing so much.’
Emma Heming Willis (pictured here with husband Bruce Willis in 2010) has revealed the ‘wake-up call’ she had about caring for Willis’ frontotemporal dementia
FTD eats away at the parts of the brain that control language, behavior and personality. Unlike Alzheimer’s disease, the most common form of dementia, patients don’t lose their memory immediately but instead undergo personality changes.
The disease also attacks areas of the brain responsible for judgment, impulse control and decision-making, leading patients vulnerable to mismanaging their finances, which adds an extra burden on to caregivers.
About one in four American adults, 63million, are family caregivers to a person who is elderly or has a chronic illness or disability, according to the American Association of Retired Persons (AARP).
This is nearly a 50 percent increase since 2015, largely due to the country’s growing aging population.
The AARP has also found that one in five caregivers report being in poor health themselves. Caregiver burnout is also common, which involves physical, emotional and mental exhaustion.
The Cleveland Clinic estimates 60 percent of caregivers experience burnout.
Heming Willis said: ‘Caregivers need to know that in order to make it sustainable, you must care for yourself, that it is not selfish, it is self-preserving.’
FTD accounts for about one in 20 dementia cases, adding up to roughly 50,000 to 60,000 Americans, compared to over 6 million with Alzheimer’s.
The disease strikes much earlier, with an average age of 60, whereas most people with Alzheimer’s are at least 65.
Over time, more and more areas of the brain deteriorate in FTD patients, causing symptoms to mirror those of late-stage Alzheimer’s, including difficulty eating or swallowing, having trouble walking, and being vulnerable to infections due to the blood-brain barrier weakening.
And it often takes just three to five years after diagnosis for most patients to require full-time care from a family member or professional staff.
Willis is pictured here with daughter Scout. Sources previously told the Daily Mail that Willis ‘is going downhill fast’
Willis is pictured in 1995’s ‘Die Hard: With a Vengeance’
In August, Heming Willis said in an interview with Diane Sawyer that Willis has been moved into a separate one-story home away from their main house, where he has a 24/7 care team.
A separate family insider told the Daily Mail: ‘He is going downhill fast.’
The cost of full-time care varies depending on location and specific needs, but experts estimate it can cost anywhere from $700 to $2,000 per day on average.
In Los Angeles, where Willis lives, it can be nearly $30,000 every month.
Even with insurance, the CDC estimates the average annual out-of-pocket cost for dementia caregivers is around $9,000.
FTD is not fatal on its own, but causes other issues that are serious or life-threatening. These include problems swallowing, or dysphagia.
Problems with eating and drinking also raise the risk of developing pneumonia or respiratory failure.
There is no cure for the disease, but some drugs and therapies may be prescribed that can help to ease symptoms by boosting chemicals like dopamine in the brain.