A nursing home resident known to wander and ingest foreign objects died after choking on ribbons at a facility in Adelaide’s north, an inquest has heard.
Ronald Maine, 71, was living in a secure unit at Helping Hand nursing home at Mawson Lakes when a staff member noticed he was pale, clammy and had blue fingertips after consuming morning tea on September 27, 2022.
Counsel assisting the coroner, Rebecca Schell, told the court Mr Maine had been diagnosed with frontotemporal dementia five years earlier, and had been assessed by Dementia Support Australia as having a high risk of choking.
She told the court Mr Maine had placed inedible object in his mouth, including clay and pearl beads, on three separate previous occasions.
Ronald Maine died at the Lyell McEwin Hospital three years ago. (Supplied: Jessica Maine)
On the morning he died, Ms Schell said nursing staff had sat him in a chair and put an oxygen mask on, but it was not until paramedics arrived that his airways were cleared and CPR performed.
“He was immediately repositioned to the ground and CPR was commenced,” she said.
“Prior to CPR, Mr Maine’s oral cavity was swept out and food and fabric ribbon were discovered.
“In total SAAS (South Australian Ambulance Service) officers removed three different pieces of fabric ribbon of varying colours from Mr Maine’s airway.”
Mr Maine was then transferred to the Lyell McEwin Hospital where he died later that day.
Ms Schell said that Mr Maine’s cause of death was determined as upper airway obstruction by food and foreign material on a background of frontotemporal dementia.
“Put simply, it is anticipated the court will hear that Mr Maine choked to death on the ribbons and food material that he had ingested,”
she said.
She said Helping Hand had completed an internal investigation after the incident and made its own recommendations about basic life support and choking training for all nursing staff.
“There is no doubt that those who performed first aid on Mr Maine, did so to the very best of their abilities, in what I understand was a very stressful situation for them,” she said.
Ronald Maine was a resident at Helping Hand nursing home at Mawson Lakes. (ABC News: Ashlin Blieschke)
But, she said the inquest would examine the training provided to staff before and since the incident and whether Mr Maine’s death could have been prevented.
“Ultimately, the inquest will consider the issue of whether appropriately administered first aid could have prevented the death of Mr Maine,” she said.
“This inquest will explore whether nursing staff in aged care facilities are receiving sufficient training in the provision of basic life support.
“This, in turn, may equip them to execute their duties in emergencies.”
She noted Deputy State Coroner Emma Roper, who is presiding over the inquest, may not be able to make a finding about where the ribbons came from.
She said Ms Roper may consider making a recommendation, when she hands down her findings at a later date.
That would be it is “vital that nursing staff have access to and undertake regular basic life support training to ensure they can provide and execute the appropriate level of care to residents in aged care facilities in the event of an emergency.”
Tendency to ingest inedible items
The enrolled nurse who first noticed Mr Maine was unwell, Juvy Rakoia, said she realised he was “sweaty all over” and had blue fingertips after she grabbed his hand to lead him to a chair.
She sad Mr Maine was known as a wanderer with a big appetite, and staff knew from his case notes and handover discussions between staff that he had a tendency to place inedible objects in his mouth.
“It’s common knowledge that Ron would sometimes be ingesting things that are not food,” Ms Rakoia said.
She told the court that upon noticing Mr Maine was unwell she called for another staff member, registered nurse Zijad Softic.
The inquest heard Helping Hand had conducted an internal investigation after Mr Maine’s death. (ABC News: Ashlin Blieschke)
She said she checked Mr Maine’s airways but could not see anything before an oxygen mask was applied.
“We checked his mouth, we swipe it out, there’s nothing anywhere,” she said.
She said because Mr Maine did not have teeth or dentures “so you can clearly see there was nothing in his mouth”.
She said she did not think he was choking because “from what I know, choking you would be gasping for air, coughing something, he wasn’t … doing all that”.
“He was eating throughout the day so I wouldn’t really think there was any obstruction, I couldn’t see anything,” she said.
During the triple-0 call, which was played to the court, Ms Rakoia explained that Mr Maine was pale, “very sweaty” and that he was breathing, but abnormally. She also told the operator there was no defibrillator available.
Mr Softic then took the phone and told the operator he could not do CPR because Mr Maine was still breathing.
“He’s basically, what I can see, he’s dying but he’s still breathing, probably 6-10 [breaths] a minute,” he said.
Ronald Maine had been diagnosed with frontotemporal dementia, the inquest was told. (Supplied: Jessica Maine)
He said he was reluctant to move Mr Maine from the chair.
“I can’t do any resus because he’s still breathing,” he told the operator.
Family tribute
Outside court, Mr Maine’s daughter Jessica, said her father was a “huge Crows fan” who was “actually really happy before he passed away”.
“Dementia made him a lot more smiley than previously,” she said.
She urged families to carefully select aged care for their loved ones.
“If you can’t get care from an aged care home, then how can you be sure that your family is going to be safe,” she said.
“I think people need to be aware that you really need to have a look around and find a good home for your families.”
The inquest is continuing and is expected to hear from other witnesses including a paramedic and an expert geriatrician.
Marc Pierrat’s mind once ran as smoothly as the gears on his endurance bike. He was a mechanical engineer by training and a marathoner for fun, a guy who maintained complicated systems at work and a meticulously organized garage at his Westlake Village home.
Three years after his diagnosis of frontotemporal dementia, Marc’s thoughts are a jumble he can’t sort out alone. Once-routine tasks are now incomprehensible; memories swirl and slip away. His wife, Julia Pierrat, 58, shepherds Marc, 59, through meals and naptime, ensures he is clean and comfortable, gently offers names and words he can’t find himself.
It is often impossible for a person to talk about the internal experience of living with FTD, either because they can’t accurately assess their internal state or don’t have the language to describe it. In many cases the disease attacks the brain’s language centers directly. In others, a common symptom is loss of insight, meaning the ability to recognize that anything is wrong.
But minds can unwind in a million different ways. In Marc’s case, the disease has taken a path that for now has preserved his ability to talk about life with what one doctor called “the most difficult of all neurologic diseases.”
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Thousands of people in the U.S. live with FTD. Marc can speak for only one of them, and at times he does so with clarity that breaks his wife’s heart. Occasionally Julia records snippets of conversation with his permission, mementos from a stage of marriage they never saw coming.
“It feels like walking into a closet you haven’t been in in a while, and you’re looking for something that you know is there, but you don’t know where,” Marc said recently, as Julia looked on.
“And then, you know, you just — yeah. You just give up,” he concluded. “It’s the giving up part that’s hard.”
Marc takes a selfie with his wife, Julia before Marc was diagnosed with FTD.
(Pierrat family)
Do you know the name of the disease that you’re living with?
Yes.
What is it called?
Frontotemporal dementia.
Yep, that’s exactly right.
FTD, for short.
How does it affect you?
Well, I guess, processing of inputs tend to, in a normal mind — they get processed efficiently to a decision. Like, if you’re going to catch a ball, you know, you have the ball in the air, [and] you have to raise your arm and your glove, and you catch the ball. And FTD interferes with all of that. So it makes it harder to catch the ball.
More than 6 million people in the U.S. currently live with dementia, an umbrella term for conditions affecting memory, language and other cognitive functions.
Up to 90% of dementia cases are caused by Alzheimer’s disease, the progressive memory disorder, or by strokes and other vascular problems that disrupt blood flow to the brain. The rest arise from a variety of lesser-known but equally devastating conditions. Frontotemporal dementia is one of them.
After putting Marc in bed for an afternoon nap, Julia spends a quiet moment in the kitchen of their home in Westlake.
In FTD, abnormal proteins accumulate in the brain’s frontal or temporal lobes, damaging and eventually destroying those neurons. It’s frequently misdiagnosed, and so the number of current U.S. cases is hard to pin down — estimates place it between 50,000 and 250,000 people.
By far the best-known person living with FTD is the actor Bruce Willis, whose family disclosed his diagnosis in 2023.
Willis has primary progressive aphasia, the second-most common form. In his case, the most damaged tissues are in his brain’s left frontal or left temporal lobes, which play crucial roles in processing and forming language. One of his first noticeable symptoms was a stutter, his wife Emma Heming Willis has said in interviews; he now has minimal language ability.
But FTD is highly heterogeneous, meaning that symptoms vary widely, and it has affected Marc and Willis in very different ways.
The disease has several subtypes based on where the degeneration begins its advance through the brain.
Marc Pierrat dances with activity counselor Rhoda Nino who leads a class at Infinity Adult Day Health Care Center in Westlake Village.
Pierrat has the most common subtype, behavioral variant FTD. His disease has targeted his frontal lobes, which manage social behavior, emotional regulation, impulse control, planning and working memory — essentially, everything a person needs to relate to others.
FTD typically presents between the ages of 45 and 60. Because it shows up so much earlier than other dementias, its initial symptoms are often mistaken for other conditions: depression, perimenopause, Parkinson’s disease, psychosis.
Everything we think and do and say to one another depends on very specific physical locations in our brains functioning correctly. Behavioral variant FTD strikes right at the places that house our personalities.
When an eloquent person suddenly can’t form sentences, it’s typically seen as a medical problem. But when an empathetic person suddenly withholds affection, it’s perceived as an act of unkindness. The truth is that both can be the product of physical deterioration in a previously healthy brain.
If you were to describe to another person what it’s like to live with FTD, how would you describe it?
Oh my God. . . . Well, you can’t assess situations accurately. You see a train coming, and it’s gonna smash into your car, and you’d be, like, ‘Oh. Huh. That train’s gonna hit my car.’ And there’s nothing you can do.
The first sign came in late 2018. Marc, then 52, was in a fender-bender a few blocks from home and called Julia for a ride. When she arrived, he was not just surprised to see her, but angry. Why was she there? Who’d asked her to come?
She was taken aback by his forgetfulness, and more so by his hostility. Marc could be stubborn and confrontational; over the decades, they’d argued as much as any couple. But this outburst was out of character. She chalked it up to nerves.
Marc was a respected project manager in the pharmaceutical industry. He spent weekends on home improvement projects or immersed in his many hobbies: hiking, woodworking, 100-mile bike races.
Marc, Julia (right), and their daughter take a selfie on the Golden Gate Bridge during a bike ride.
(Pierrat family)
Julia was a business manager with Dole Packaged Foods. Their daughter was pursuing a doctorate at UCLA. The couple enjoyed life as empty nesters with shared passions for road trips and camping.
For a year or two after the accident, nothing happened that couldn’t be dismissed as a normal midlife memory lapse or a cranky mood. But by late 2020, something had undeniably changed. The harsh parts of Marc’s personality ballooned to bizarre proportions, smothering his kindness, generosity and curiosity.
He lost a phone charger and accused Julia’s mother of stealing it. He misplaced his binoculars and swore his sister took them. The neighbors asked the Pierrats to trim their gum trees and Marc flew into a rage, ranting about a supposed plot to spy on them.
His work performance and exercise habits appeared unaffected, which only made his outbursts more confusing — and infuriating — to Julia.
“At the beginning of the disease nobody knew he had any issue, other than he seemed like a total jerk,” she recalled.
The Pierrats did not know they were at the start of a chaotic period distinct to sufferers of FTD’s behavioral variant.
Julia laughs as Marc he squeezes by on a narrow bridge at the Foxfield Riding School in Lake Sherwood.
“Everything that can affect relationships is at the center of the presentation of the behavioral variant,” said Dr. Bruce Miller, director of the UC San Francisco Memory and Aging Center. “The first instinct of a spouse or a child or a human resource program or a psychiatrist [is to] assume a psychiatric problem.”
People with the condition start to lash out at loved ones or lose interest in lifelong relationships. They may snarl at strangers or shoplift at the mall. They consume food or alcohol obsessively, touch people inappropriately or squander the family’s savings on weird purchases.
And at first, just like in the Pierrats’ case, nobody understands why.
“When someone is not who they were, think neurology before psychology,” said Sharon Hall, whose husband Rod — a devoted spouse who delighted in planning romantic surprises — was diagnosed in 2015 after he started drinking heavily and sending explicit texts to other women.
At Julia’s insistence Marc visited his doctor in July 2021, who referred him to a neurologist. He would spend the next year making his way through a battery of appointments, scans and cognitive testing.
In the meantime, his life disintegrated.
Marc and Julia with their family dogs prior to his diagnosis with FTD.
(Pierrat family)
Just a few years earlier, bosses and colleagues praised Marc as a superlative manager. In January 2022 he was put on notice for a host of causes: combative emails, obnoxious behavior, failures of organization.
At home he botched routine fix-it jobs, missed crucial appointments and got lost on familiar routes. He stopped showering and called Julia appalling names. She went to therapy and contemplated divorce.
Finally, on July 18, 2022, the couple sat across from a neurologist who delivered the diagnosis with all the delicacy of an uppercut.
There was no cure, he told them, and few treatment options. He handed them a pamphlet. Marc showed no emotion.
In the car Julia sobbed inconsolably as Marc sat silent in the passenger seat. Eventually she caught her breath and pulled out from the parking lot.
Do you like being married?
Yes, I do.
Why?
It makes me a better person.
That’s so sweet. How do you think it makes you a better person?
Being able to talk to you and, you know, resolve through different problems together. I mean, it’s good to have an extra mind.
They left the neurologist with nothing: no instructions, no care plan, not even the stupid pamphlet, which was about memory problems in general. “It was diagnose and adios,” Julia said. “I hit the internet immediately.”
Julia now had three different roles: her paid job, Marc’s 24-hour care, and a part-time occupation finding support, services and answers.
Marc tries to figure out what he would like for lunch as Julia offers suggestions at the Joi Cafe in Westlake.
She insisted Marc fill the neurologist’s prescription for an anti-anxiety medication that diminished his irritability and agitation without zonking him out.
She found an eldercare attorney, and together she and Marc organized their legal and financial affairs while he was still well enough to understand what he was signing. Through Facebook she found her most valuable lifeline, a twice-weekly Zoom support group for caregivers.
She went on clinicaltrials.gov, a database of studies run by the U.S. National Institutes of Health, and FTDregistry.org, which lists trials specific to the disease, and signed the two of them up for every study they qualified for.
Marc was accepted into AllFTD, a longitudinal study that is the largest ever conducted for this disease. The couple travels yearly to the University of Pennsylvania’s FTD Center for tests that track changes in his symptoms and biomarkers, with the goal of contributing to future therapies and preventive treatments.
Marc paints a bird house during an art class at Infinity Adult Day Health Care Center in Westlake Village.
She found the website of the nonprofit Assn. for Frontotemporal Degeneration. Eventually she became a volunteer AFTD ambassador, speaking and advocating for families affected by the disease. In August, she posed for a group photograph at the state capitol with Emma Heming Willis and other FTD advocates who traveled to Sacramento to meet with state lawmakers.
All of it is a way of finding purpose in pain. FTD has dulled Marc’s emotional reactions, leaving Julia to carry the full weight of their grief.
“He grasps the impact, but somehow the emotion is buffered,” she said. “I lose it sometimes. I cry my eyes out, for sure. I feel the full emotional impact of it, in slow motion. . . . There’s no blunting it for me.”
Julia helps Marc up from a couch on the back patio of their home in Westlake.
These days the Pierrats rise around 6 a.m., eat the breakfast Julia prepares, and then Marc takes his first nap of the day (fatigue is a common FTD symptom). When he wakes around 9 a.m. Julia makes sure he uses the bathroom, and then drives him to a nearby adult daycare program where he does crafts and games until lunch. He sleeps for another few hours at home, spends two hours in the afternoon with a paid caregiver so that Julia can do errands or exercise, and then the couple eats dinner together before Marc beds down by 8 p.m.
When they are awake together, they go for walks around the neighborhood or to familiar cafes or parks. The hostility of the early disease has passed. They speak tenderly to one another.
At each sleep, Julia walks him upstairs to the bedroom they used to share. She tucks him in and gives him a kiss. At night she retires to a downstairs guestroom, because if they share a bed Marc will pat her constantly throughout the night to make sure she’s still there.
My clock’s ticking. I could die any day.
Do you feel like you’re going to die any day? Or do you feel healthy?
I feel kind of healthy, but I’m still worried. Because I have something that I can’t control inside of me.
About two years ago, Julia and Marc were on one of their daily walks when she realized they had already had their last conversation as the couple they once were, with both of them in full possession of their faculties. In one crucial sense, Marc was already gone.
Julia makes sure Marc is comfortable for his afternoon nap at their home in Westlake.
But in other ways, their connection remains.
“The love that we have is still completely there,” she said recently in the couple’s backyard, while Marc napped upstairs.
“When you’re married to someone and you’ve been with someone for so long, you almost have your own language between you. He and I still have that.”
She looked out over the potted succulents and winding stone pathways they had spent so many weekends tending together.
“A lot of our relationship is preserved in spite of it, which is just so interesting, [and] also makes it more heartbreaking,” she continued. “Because you know that if the disease plays out like it is expected to, you will just continue to slowly lose pieces.”
The average life expectancy for people with Marc’s type of FTD is five to seven years after diagnosis. Some go much sooner, and others live several years longer.
At the moment, all FTD variants lead to a similar end. Cognition and memory decline until language and self-care are no longer possible. The brain’s ability to regulate bodily functions, like swallowing and continence, erodes. Immobility sets in, and eventually, the heart beats for the last time.
But until then, people keep living. They find reasons to keep going and ways to love one another. The Pierrats do, anyway.
Marc and Julia visit horses at the Foxfield Riding School in Lake Sherwood.
On a recent morning, the couple strolled through a nearby equestrian school where their daughter once took lessons. Julia brought a baggie of rainbow carrot coins she’d sliced at home. She showed Marc how to feed the horses, as she does at every visit.
“Hold your hand completely flat, like I’m doing,” she said gently.
“I don’t want to lose a finger,” Marc said as a chestnut horse nuzzled his palm.
“You’re not going to lose a finger,” Julia assured him. “I won’t let that happen to you.”
Marc and Julia walk hand-in-hand after visiting horses at the Foxfield Riding School in Lake Sherwood.
If you are concerned about a loved one with dementia or need support after a diagnosis, contact the Assn. for Frontotemporal Dementia helpline at theaftd.org/aftd-helpline or (866) 507-7222 Monday through Friday from 9 a.m. to 5 p.m. EST.
Former talk show host Wendy Williams is thanking well-wishers for their response to the revelation she has been diagnosed with dementia and ahead of the airing of Lifetime documentary about her struggles.
“I want to say I have immense gratitude for the love and kind words I have received after sharing my diagnosis of Aphasia and Frontotemporal Dementia (FTD). Let me say, wow! Your response has been overwhelming,” Williams said in a statement released to The Associated Press through a representative for her care team. “The messages shared with me have touched me, reminding me of the power of unity and the need for compassion.”
Williams’ statement came a day after her team revealed the 59-year-old has been diagnosed with with primary progressive aphasia and frontotemporal dementia.
It also came hours after a New York judge ruled that Lifetime’s “Where is Wendy Williams?” documentary will air this weekend as scheduled. The order signed by an appellate judge, who was reviewing a petition to block the documentary’s release, says such a ruling would be an “impermissible prior restraint on speech that violates the First Amendment of the U.S. Constitution.”
The ruling clears Lifetime’s two-night broadcast plan for “Where is Wendy Williams?,” which includes footage of the former talk show host and interviews.
An attorney for Williams’ guardian did not immediately return an email seeking comment Friday.
“Lifetime appeared in court today, and the documentary ‘Where is Wendy Williams?’ will air this weekend as planned,” the network said in a statement.
Emma Heming Willis, the wife of actor Bruce Willis, is opening up about what it’s like caring for someone with dementia and mental health.
“I continue to need personal space and peace to thrive,” Williams said in her statement Friday. “Please just know that your positivity and encouragement are deeply appreciated.”
She credited the Association for Frontotemporal Degeneration for its support and efforts to educate the public about the disease, which is the same form of dementia Bruce Willis has, after her diagnosis was announced.
Frontotemporal dementia is a rare disease that affects parts of the brain controlling behavior and language. These parts of the brain shrink as the disease gets worse. The disease often includes primary progressive aphasia, which means it’s causing problems with language skills. A person with this type of FTD may have trouble finding words or understanding speech.
Williams’ self-titled daytime talk show ended in 2022 because of her health issues. Sherri Shepherd, who filled in for Williams as a guest host, received her own show.
In this Nov. 7, 2014, file photo, TV talk show host Wendy Williams arrives during the 2014 Soul Train Awards in Las Vegas.
Photo by Omar Vega/Invision/AP, File
Williams said in 2018 that she had been diagnosed years before with Graves’ disease, which leads to the overproduction of thyroid hormones and can cause wide-ranging symptoms that can affect overall health. Thursday’s statement from Williams’ care team said Williams’ dementia diagnosis happened in 2023.
People magazine reported in a cover story on Williams this week that some family members say they don’t know where she is and cannot call her themselves, but that she can call them.
The article said the Lifetime documentary crew, which set out in 2022 to chronicle Williams’ comeback, stopped filming in April 2023 when, her manager “and jeweler” Will Selby says in footage for the film, she entered a facility to treat “cognitive issues.” Her son says in the documentary that doctors had connected her cognitive issues to alcohol use, People reported.
Wendy Williams has revealed that she is facing a rare form of dementia and a disorder that affects communication.
Williams, 60, was diagnosed with primary progressive aphasia and frontotemporal dementia (FTD) in 2023 after undergoing “a battery of medical tests,” according to a press release made on behalf of the former talk show host, aiming to correct “inaccurate and hurtful rumors about her health.”
“Over the past few years, questions have been raised at times about Wendy’s ability to process information and many have speculated about Wendy’s condition, particularly when she began to lose words, act erratically at times, and have difficulty understanding financial transactions,” the statement reads.
FTD is an umbrella term for a group of disorders that most often affect the parts of the brain associated with personality and behaviour, according to the Alzheimer Society of Canada. It can also cause difficulties with speech and movement, as well as memory loss.
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Aphasia is referred to as a “language problem” by the Canadian Aphasia Institute, which states it “most dramatically affects conversational interaction (talking and understanding), as well as the ability to read and write.”
Bruce Willis is another high-profile celebrity who has been diagnosed with FTD and aphasia. Willis announced he was quitting acting in 2022, and a year later, his family made a statement that the actor’s condition had worsened and he was also experiencing FTD.
Bruce Willis diagnosed with dementia 1 year after battling with aphasia
The update on Williams’ health comes two years after she cancelled her hit talk show The Wendy Williams Show, which ran for 14 years. At the time, Williams was open that she had been diagnosed with Graves’ disease, an autoimmune disorder that affects the thyroid and can cause bulging eyes, excessive sweating and muscle weakness, according to the Thyroid Foundation of Canada.
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The statement on Williams’ behalf acknowledged that her health issues “have already presented significant hurdles in Wendy’s life.”
“The decision to share this news was difficult and made after careful consideration, not only to advocate for understanding and compassion for Wendy, but to raise awareness about aphasia and frontotemporal dementia and support the thousands of others facing similar circumstances,” it reads.
“Unfortunately, many individuals diagnosed with aphasia and frontotemporal dementia face stigma and misunderstanding, particularly when they begin to exhibit behavioral changes but have not yet received a diagnosis.”
Approximately five to 10 per cent of all dementia cases are FTD, according to the Alzheimer Society of Canada, but it makes up about 20 per cent of all young-onset dementia diagnosed in those under 65. There is also no known cure and no effective way to slow the progression of FTD.
Cathy Barrick, chief executive officer at the Alzheimer Society of Ontario, told Global News last year that FTD “primarily attacks the frontal temporal lobe … that governs your behaviour and judgment.”
“So sometimes the symptoms associated with it can be quite disturbing both to the person who is living with it and the people around them.”
Barrick said it’s important for people to be aware of FTD and be more understanding of those who have it.
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“People who are in the early stages actually can be still very productive members of society… We don’t want them to have to withdraw as they start to show symptoms and have some struggles,” Barrick said.
“Maybe if employers and family members just understood people’s limitations and that maybe they may have days that are better than others, people can still really actively participate and contribute. And so overcoming that stigma is really, really important.”
Williams is “still able to do many things for herself,” according to the update. “Most importantly she maintains her trademark sense of humor and is receiving the care she requires to make sure she is protected and that her needs are addressed.”
A new Lifetime documentary titled Where is Wendy Williams? is due to air on Saturday.
According to People, crews started filming in August 2022 and were set to document Williams’ comeback and she prepared to launch a new podcast.
But things took a turn as Williams’ serious health issues became more clear.
“We’ve all seen the images over the last few months — and, really, few years — of what has seemed like a spiral for my aunt,” Williams’ niece Alex Finnie told People. “It was shocking and heartbreaking to see her in this state.”
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The documentary crews stopped filming in April 2023 as the former host was admitted to a facility to treat “cognitive issues.”
Winnipeg Blue Bomber Adam Bighill calls out Wendy Williams for TV host’s comments
Former talk show host Wendy Williams has been diagnosed with dementia and aphasia, she and her medical team said in a statement released Thursday.
Williams has been open in the past about her prolonged health struggles, which included Graves’ disease and a thyroid condition.
The 59-year-old former host of “The Wendy Williams Show” was diagnosed with primary progressive aphasia and frontotemporal dementia in 2023 and those diagnoses have “enabled Wendy to receive the medical care she requires,” according to the press release.
“The decision to share this news was difficult and made after careful consideration,” the statement said, “not only to advocate for understanding and compassion for Wendy, but to raise awareness about aphasia and frontotemporal dementia and support the thousands of others facing similar circumstances.
“Wendy is still able to do many things for herself. Most importantly she maintains her trademark sense of humor and is receiving the care she requires to make sure she is protected and that her needs are addressed. She is appreciative of the many kind thoughts and good wishes being sent her way.”
The National Aphasia Association describes primary progressive aphasia is “a neurological syndrome in which language capabilities become slowly and progressively impaired.”
According to the association, unlike other forms of aphasia, primary progressive aphasia does not result from a stroke or brain injury and instead is caused by the “deterioration of brain tissue important for speech and language.”
Dementia is an umbrella term that describes “the impaired ability to remember, think or make decisions that interferes with doing everyday activities,” according to the Centers for Disease Control and Prevention.
Though dementia mostly affects older adults, the CDC notes that it is “not a part of normal aging” and the organization projects that there will be as many as 14 million people with dementia by 2060.
Demi Moore and Bruce Willis are celebrating their youngest daughter together.
On Saturday, the Charlie’s Angels: Full Throttle star took to Instagram to wish her daughter Tallulah a happy 30th birthday — and shared an adorable family pic with the Die Hard actor. The three posed in what looked like a back yard with Tallulah in the middle holding onto each parent, sporting a navy blue sweater and maroon lounge pants. Demi wore a black cardigan and blue jeans, while Bruce, for his part, dressed in a black zip-up and gray pants, and accessorized the look with a baseball cap and a scarf. Demi captioned the photo:
“Showering our @buuski with love today on her 30th birthday”
See the pic, and one of the mother-daughter pair posing with Tallulah’s BF Justin Acee and big sis Scout (below):
This is a rare sighting for Bruce, as he’s unfortunately been battling frontotemporal dementia. In December, an insider told Us Weekly the family, including Tallulah and, Demi, and her other two daughters with the 68-year-old, Rumer, 35, and Scout, 32, as well as his current wife Emma Heming and their own two young daughters, Mabel, 11, and Evelyn, 9, are “soaking up every moment they get with him” because “any day could be his last.”
SO, so tragic. These moments must be so sacred for them.
What are your thoughts on this latest Bruce sighting, Perezcious readers? Let us know in the comments down below.
Screen icon Bruce Willis celebrated his 68th birthday on Sunday and video from the day shows the actor surrounded by love just a month after he was diagnosed with frontotemporal dementia.
Actor Demi Moore, who was married to Willis from 1987-2000 and remains close, posted the blended-family celebration on Twitter and Instagram:
“Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis,” they wrote at the time.
Willis’ current wife, Emma Heming Willis, posted on social media that she started the morning of his birthday by crying.
“I always get this message, or people always tell me, that ‘Oh, you’re so strong, I don’t know how you do it,’” she said. “I’m not given a choice. I wish I was.”
“But I’m also raising two kids in this so sometimes, in our lives, we have to put our big girl panties on and get to it. And that’s what I’m doing. But I do have times of sadness every day, grief every day, and I’m really feeling it today on his birthday.”
Willis is a two-time Emmy winner for his lead role on “Moonlighting” and a guest role on “Friends.”
He has also been one of the industry’s most prolific action stars for more than three decades in a career that includes starring roles in the “Die Hard” franchise as well as films such as “The Fifth Element,” “The Sixth Sense,” “Pulp Fiction” and “12 Monkeys.”
Emma Heming Willis, Bruce Willis’ wife, is pleading with paparazzi to give the longtime actor “space” and to not yell at him when he’s in public, as his dementia progresses.
Over the weekend, Willis posted a video on her Instagram “in spirit of raising awareness around dementia” and had a message for photographers trying to capture shots and video of her husband after a recent incident when the actor was out getting coffee with his friends.
“I know this is your job, but maybe just keep your space,” she said. “For the video people, please don’t be yelling at my husband, asking him how he’s doing or whatever. The woohoo-ing and the yippee ki-yays – just don’t do it. OK? Give him his space. Allow for our family or whoever’s with him that day to be able to get him from point A to point B safely.”
Willis added that the Hollywood star’s friends did a “stand up job” protecting him.
The actor’s family last month said he was diagnosed with frontotemporal dementia, which could bring on “challenges with communication,” according to the Association for Frontotemporal Degeneration. It came almost a year after Willis would step away from his acting career because of an aphasia diagnosis. However, as noted by his family, his condition has deteriorated.
CBS News medical contributor Dr. David Agus told “CBS Mornings” that Willis’ functions will get “worse and worse” as his frontotemporal dementia continues to advance.
“This is a progressive disorder … He won’t be able to do many activities that we all do in life,” Agus said.
Bruce Willis’ family says the actor has been diagnosed with frontotemporal dementia, which can affect a person’s personality, behavior, language and movement. There are no approved treatments, and there is no cure. Carter Evans reports and Dr. David Agus has more on what the diagnosis means.
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Nearly a year after announcing his battle with aphasia, the actor’s family, including ex-wife Demi Moore, current wife Emma Heming and his five daughters, shared a health update in a statement on the Association for Frontotemporal Degeneration website.
“While this is painful, it is a relief to finally have a clear diagnosis,” the family said, noting that Willis’ condition has worsened in the past year.
“FTD is a cruel disease that many of us have never heard of and can strike anyone. 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,” they continued.
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Willis, 67, retired from acting in March of 2022. His family explained at the time that Willis was “experiencing some health issues … which are impacting his cognitive abilities.”
On Thursday, they explained that the FTD is affecting Willis’ communication skills.
According to the Alzheimer Society of Canada, FTD is an umbrella term for a group of rare disorders that most often affect the parts of the brain associated with personality and behaviour.
Approximately 5 to 10 per cent of all dementia cases are FTD, but it makes up about 20 per cent of all young onset dementia diagnosed in those under 65.
Unlike in Alzheimer’s disease, however, people with frontotemporal dementia often remain conscious of time (for example, what year it is) and memory is not of concern in the early stages.
In the later stages, general symptoms of dementia can arise, including confusion and forgetfulness. Motor skills are lost and swallowing difficulties occur.
While there are no treatments for the disease, the Willis family says it’s “a reality that we hope can change in the years ahead.”
“Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. We know in our hearts that if he could today, he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families.”
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