Bruce Willis' wife, Emma, says 'clickbait' articles about him having 'no joy' are untrue: Here's what to know about frontotemporal dementia
"There is so much beauty and soulfulness in this story," Emma Heming Willis said of her husband's health journey.
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Emma Heming Willis is setting the record straight about her husband Bruce Willis's health.
On March 3, Heming Willis took to social media to express her frustration with rumours about Willis's life with frontotemporal dementia (FTD). In a video posted to Instagram, the 45-year-old mother-of-two said she was "triggered" after she read a "clickbait" headline regarding her family.
"The headline basically says there is 'no more joy' in my husband," she said. "I can just tell you, that is far from the truth. I need society and whoever’s writing these stupid headlines to stop scaring people. Stop scaring people to think that once they a diagnosis of some kind of neurocognitive disease that that’s it, it’s over."
Heming Willis said her family's reality is "the complete opposite" and while there is "grief and sadness," her family has started "a new chapter" that's filled with love, joy, connection and happiness.
Heming Willis, who shares daughters Mabel, 11, and Evelyn, 9, with the actor, included a lengthy caption to Instagram discussing her experience as a caregiver for a family member with FTD.
"My experience is that two things can be true and exist at the same time. Grief and deep love. Sadness and deep connection. Trauma and resilience. I had to get out of my own way to get here but once I arrived, life really started to come together with meaning and I had a true sense of purpose. There is so much beauty and soulfulness in this story." she wrote.
Heming Willis said she's come to realize that many people have not properly educated themselves on "any kind of neruocognitive disease." She continued by expressing her frustration with headlines that spread "misinformation" perpetuated by clickbait and urged media to "dig deeper" and do their "due diligence" on reporting on dementia.
Last year, the family released a statement announcing Willis's diagnosis with FTD.
"FTD is a cruel disease that many of us have never heard of and can strike anyone," the family said. "For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know. Today there are no treatments for the disease, a reality that we hope can change in the years ahead."
What is frontotemporal dementia, the disease that Bruce Willis has?
Frontotemporal dementia is an umbrella term for a group of rare disorders that affect the frontal and temporal lobes of the brain — the regions associated with personality, language, movement and behaviour.
Diagnoses of FTD are rare. Researchers estimate cases of frontotemporal dementia make up just 5 to 10 per cent of all dementia cases. However, unlike other forms of dementia, FTD tends to be diagnosed earlier in life. Alzheimer's Disease mainly affects people aged 65 and older, whereas FTD symptoms can present between 40 and 65. When symptoms of dementia start before age 65 (known as young onset dementia), approximately 1 in 5 cases are frontotemporal dementia.
Recently, the diagnosis made headlines again when daytime television host Wendy Williams's team revealed she had been diagnosed with FTD and primary progressive aphasia last year.
Signs & symptoms of frontotemporal dementia
Symptoms of FTD vary from person to person, depending on the areas of the brain affected.
Damage to nerve cells in the frontal and temporal lobes can limit interactions with other parts of the brain, often presenting as changes in behaviour, personality, movement and communication. A person with FTD may also experience language difficulties, known as primary progressive aphasia. Bruce Willis was diagnosed with aphasia last year, ending his acting career.
In addition to behavioural and personality changes, symptoms of FTD may include:
Difficulties with speech
Memory loss
Withdrawn or disinhibited behaviour
Becoming easily distracted or repeating the same actions continuously
Overeating or drastic changes in food preference
Incontinence
Personality changes are more apparent in the early stages of FTD, with memory decline often not arising until its later stages.
How does dementia impact the diagnosed person's loved one?
The impact of dementia can strain the emotional well-being of partners and loved ones when someone is diagnosed. In a previous interview with Yahoo Canada, Natasha Jacobs, advisory group lead for the Alzheimer's Society of Canada, said changes in moods and behaviour can be difficult to process in a romantic relationship.
"Your partner may obviously seem a lot different than you're used to, and your conversation — the pace and how your chatting with each other — will change."
Even things that seem small can lead to frustration. "To not know whether it's night or day, to be sleeping a lot more or to not know to wake up and get dressed, and then your partner having to help you with those things, or remind you of those things is really difficult."
Can you maintain emotional and physical connections with dementia?
Daily rituals, such as walks and intimate dinners at home, become essential in maintaining emotional and physical connections when it comes to dementia.
Jacobs said it's definitely possible, and it's about "continuing to care for the person for who they are still, and who they once were." She explained it's about moving forward with love and care.
People with dementia can continue to have a healthy intimate life with their partner for many yearsNatasha Jacobs
The Alzheimer's Society of Canada explained dementia "does not change the need for love and affection," but it can affect a person's interest in sex. It's important to talk about this with your partner, especially in the early stages of dementia.
"People with dementia can continue to have a healthy intimate life with their partner for many years," the agency explained, emphasizing the need for openness. "The changes in relationships and sexual needs of both the person with dementia and their partner can cause fear, confusion, anxiety, embarrassment and sadness."
A partner who is in a caregiving role may also have their needs change as they adjust to a new dynamic, and may feel guilty. That's why communication, as early as possible, is key.
"Partners who wish to be intimate can continue to be so with mutual agreement and with an understanding that how they express intimacy may change as the dementia progresses. Often it is not a matter of ceasing sexual activity, but finding different ways of expressing intimacy," the Alzheimer's Society of Canada explained.
More resources on intimacy in dementia are available online.
What can you do when your loved one is diagnosed?
Some key strategies in helping your loved one who has been diagnosed with dementia can include:
Using visual aids (visible clocks, calendars for day-to-day awareness)
Decluttering (helps with confusion)
Establish routines (ie. daily walks)
Embrace technology (set alarms or use voice-activated assistants like Siri)
Substitute busy events for intimate ones (ie. having a romantic dinner at home)
Plan for the future (early talks about role changes and establishment of a care team)
It's important to talk about ways to move forward as the dementia progresses, too. "You could speak to a social worker, putting together this sort of care team so that when the time comes, you're well supported, and you're well educated."
When partners and family members become caregivers, Jacobs assures there's a wide range of support systems available in Canada.
A crucial piece of advice from Jacobs is also "looking after yourself as somebody who's looking after somebody with dementia." Finding time for yourself is key in having "the strength and the clarity to love your partner," she explained.
The Alzheimer's Society of Canada has a long list of resources available on what to expect from dementia, how to handle certain behaviours, and more for caregivers and those living with dementia.
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