The unexpected ‘huge burden’ Emma Heming Willis is taking on caring for her husband Bruce Willis

Bruce Willis’ wife has opened up about the unexpected ‘huge burden’ that comes with carrying for her husband with dementia.

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, sources close to the family revealed Heming Willis is struggling to not only help manage the star’s rapidly deteriorating condition but also manage his hefty estate.

The source said: ‘Taking care of Bruce isn’t just about keeping up his spirits and making sure he can physically get through the day. It also involves looking after the massive fortune he accrued as an A-list movie star.’ 

Willis has an estimated $250million in the bank, which his wife is reportedly now in charge of, as his FTD is too advanced for him to manage it with his team. 

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, even if they have advisors. 

The family insider told Globe: ‘She’s having to learn a lot of this stuff as she goes, and it’s no wonder she seems to be carrying around a huge burden right now.

‘It’s a full-time job unto itself. Emma never anticipated she’d be responsible for this when she and Bruce first got involved, because Bruce had a giant business team taking care of that stuff.’

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. 

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. 

According to investment management company Merrill Lynch, more than nine in 10 caregivers are also financial caregivers, meaning they have to manage their loved one’s health and medical decisions, as well as their finances, while also contributing to costs of care.  

For wealthier patients like Willis, a caregiver also needs to learn how to manage investments and assets and deal with issues such as inheritance. 

The source said: ‘Emma’s life has become so complex because she has become the final decision-maker about all this stuff.

‘Maintaining Bruce’s financial empire is something that Emma has to deal with on her own every single day, so you do worry for her!’

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.