Actor Bruce Willis seen with his wife Emma Heming WillisShare on Pinterest
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  • Bruce Willis’ family is talking about the actor’s health condition.
  • His wife Emma Heming Willis said it is unclear if the actor understands he has dementia.
  • The actor was diagnosed with frontotemporal dementia, which can affect behavior, personality, language and movement.

Actor Bruce Willis’ wife, Emma Heming Willis, appeared on NBC’s “The Today Show” to talk about the actor’s recent diagnosis with frontotemporal dementia (FTD). She said the disease, one of the many different types of dementia, is hard both on the person diagnosed, as well as the family.

Frontotemporal dementia is a group of disorders that occur when neurons on the frontal and temporal lobes of the brain are damaged, according to the National Institute on Aging. This causes the lobes to shrink, which can affect behavior, personality, language, and movement.

Heming Willis told Hoda Kotb on The Today Show that she is unsure if her husband is aware of his condition.

“It’s hard to know,” Heming Willis told Kotb.

This lack of awareness of one’s own condition is certainly a possibility and can make life for the person with the condition and those caring for them not only difficult but also emotionally painful.

“FTD, in a nutshell, is a condition that leads to brain cells slowly not working or dying over time, which is called neurodegeneration,” said Dr. Joel Salinas, Clinical Assistant Professor of Neurology at NYU Langone Health and Chief Medical Officer at Isaac Health. “Whenever a family member is diagnosed [with dementia] it’s a diagnosis for the whole family.”

“Dementia is a general term that we use for cognitive impairment, which is a decline from the previous level of functioning and is significant (or severe) enough to interfere with a person’s ability to manage their activities of daily living, like managing finances or medications, driving, bathing, etc,” said Dr. Marzena Gieniusz, a geriatrician at Northwell Health.

She adds that different types of dementia have many things in common, including overlapping signs and symptoms, however, there are some features that are more typical in certain types versus others.

Language problems, for example, are more commonly seen in the early stages of FTD than in the early stages of Alzheimer’s dementia.

“There are different forms of ‘Frontotemporal Dementia’ but in general, this type of dementia is caused by injury to neurons and abnormal accumulation of proteins in the frontal and temporal lobes of the brain,” said Gieniusz. “This type of dementia often affects people earlier in life than most of the other types of dementia and is typically diagnosed in the mid-40s to mid-60s.”

Symptoms can include changes in personality and behaviors, difficulty controlling emotions, decline in judgment, movement problems, and trouble communicating or language difficulties.

What’s difficult to know is if patients with FTD are aware of their own cognitive decline.

“A specific symptom of these conditions is called ‘lack of insight.’ The medical term is anosognosia. It’s an inability to detect or be aware of these changes,” said Salinas. “When somebody is affected more in the frontal lobes, that’s more likely to be the case.”

The further along the conditions are, the more likely patients are to develop a lack of insight.

“One of the frustrations that family members, adult children, spouses may have is that they think the patient is in denial. While that may be true in some instances, in other instances it may be that they just don’t have the awareness,” Salinas said.

Dementia is a complex disorder. It affects patients in every way: physically, emotionally, socially, spiritually, and financially. It also affects everyone who cares for them, which can be particularly difficult since there is still so much we do not know or understand about the disease, not to mention the fact that there is no cure.

“What I’m learning is that dementia is hard. It’s hard on the person diagnosed. It’s also hard on the family. That is no different for Bruce or myself or the girls,” Hemming Willis said of her family’s experience with the disease.

“This can be frustrating for everyone,” said Gieniusz. “Understanding the disease and getting the proper diagnosis is often challenging enough, but then it’s a struggle to navigate our unfortunately complex and resource-limited healthcare environment to help those they care for, often while trying to somehow manage their own life at the same time. It’s not uncommon to see caregivers neglect their own health to care for those they love.”

This is why it is so important for patients and caregivers to connect with a team of professionals who understand the disease and can help.

Salinas said that the first thing caregivers can do is to find out what they need at the moment. For some people, that feeling of support comes from having information and educating themselves as much as possible. For other people, what they need is emotional support. Another way caregivers may need support is with physical help in the home, whether it’s someone to help keep track of appointments or to help with more daily activities like bathing, showering, and dressing.

“It’s a long, challenging process. People can really feel things like loneliness, isolation, stress, and abandonment. I think there are so many ways these things can be addressed. Even though these conditions may not have a cure, you can address these other things like loneliness and isolation and being detached from support,” he said.

“We often remind caregivers about the importance of self-care, and not just for their own benefit but also for the fact that they can’t do their best to care for others if they are not doing well themselves,” added Gieniusz. “Even small acts of self-care can sometimes go a long way, ensuring they keep up with their own medical appointments, eat a healthy diet, exercise, and do at least one thing they enjoy a day, even if it’s just listening to their favorite music while they’re driving. Every little bit matters.”

One of the most important ways to help a patient and their loved ones through the struggles of dementia is early detection and diagnosis. The more time to put plans in place, the better.

There are some tests that assist clinicians in diagnosing dementia and ruling out other conditions, however the diagnosis is often complex and requires a comprehensive evaluation that includes a thorough history from the patient, lab tests, and other testing as needed.

“Genetic factors can affect some people’s risk of developing dementia. It can be hereditary,” said Gieniusz. “Therefore genetic testing is sometimes done to assist with diagnosis or to evaluate for risks in those genetically related to the person with dementia. However, it is important to note that not everyone with genetic predisposition will develop the disease.”

People can modify the risk factors to lower the risk of developing dementia, too. General recommendations include healthy lifestyle behaviors like avoiding smoking, avoiding or limiting alcohol, managing stress levels, keeping a healthy diet and exercise routine, maximizing cognitive reserve, and getting enough sleep.

If there are any changes noted in cognitive function that are a decline from usual function, it is important to discuss those changes with a primary care doctor.

Emma Heming Willis talked about her husband Bruce Willis and how his health has been affected by frontotemporal dementia. This type of dementia is more commonly diagnosed in people in their mid-40s to mid-60s.