Learning About Frontotemporal Dementia (FTD) and Aphasia
- TV personality Wendy Williams, 59, who has dealt with various medical issues over the past few years has been diagnosed with a rare form of dementia known as frontotemporal dementia (FTD) and a language disorder called aphasia.
- Her diagnoses come after the former talk show host previously been open about living with lymphedema, vertigo, and an illness associated with Graves’ disease, an immune system disorder that makes the body overproduce thyroid hormones.
- Wendy Williams has also been diagnosed with frontotemporal dementia (FTD), a common cause of dementia described by Johns Hopkins Medicine as “a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost.”
- Since the disorder causes the brain’s temporal lobes to become smaller, the disease can affect behavior, personality, language, and movement.
- Aphasia is “a language disorder caused by damage in a specific area of the brain that controls language expression and comprehension,” according to Johns Hopkins Medicine. There are many different types of the disorder and it’s unclear which type Williams’ is.
- Aphasia is caused by damage to the language-dominant side of the brain. Many different things like stroke, head injury, infection and dementia can lead to this damage, but it can also be cause by a brain tumor which can be cancerous or noncancerous.
Williams’ diagnoses come after the mom of one has previously been open about living with lymphedema, vertigo, and an illness associated with Graves’ disease, an immune system disorder that makes the body overproduce thyroid hormones.
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Williams’ medical care team explained further in the news release, dated February 22, “In 2023, after undergoing a battery of medical tests, Wendy was officially diagnosed with primary progressive aphasia and frontotemporal dementia (FTD).
“Aphasia, a condition affecting language and communication abilities, and frontotemporal dementia, a progressive disorder impacting behavior and cognitive functions, have already presented significant hurdles in Wendy’s life.”
Williams’ care team, which was chosen by the former broadcaster herself, credits the confirmation of her diagnoses to their “diligence” and “the extraordinary work of the specialists at Weill Cornell Medicine” as now she’s able to receive the care she needs.
“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,” the care team stated.
“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.”
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The care team also hopes that the stigma linked with dementia will soon be “eliminated” with early detection and a better understanding of the disease.
Despite her diagnosis, the medical care team noted that “Wendy is still able to do many things for herself.”
They conclude, “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.”
According to People, Williams was admitted into a facility to treat “cognitive issues” last April and has since been assigned a legal guardian appointed by court.
In a recent interview with People, Williams’ niece Alex said her aunt “sounds really great” since getting the help that she needs.
“To hear my aunt now in terms of just how clear she is, just how focused she is on the importance of family and the reality in terms of facing and understanding where she’s at physically and mentally and emotionally, it is like a 180,” Alex told People.
Williams’ sister Wanda Finnie told the celebrity news outlet, ” I don’t know what is working, but I do know that when she did reach out to me, it was a person who is remarkably different than what we see in that documentary.” People points out that Finnie was talking about the “Where Is Wendy Williams?” documentary filmed between August 2022 and April 2023.
What Is Aphasia?
According to Johns Hopkins Medicine, aphasia is “a language disorder caused by damage in a specific area of the brain that controls language expression and comprehension” leaving the affected person unable to effectively communicate with others.
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It’s important to note, however, that there are many different types of aphasia, and it’s unclear exactly what type Williams has. The different types are generally diagnosed based on which area of the language-dominant side of the brain is affected and the extent of the damage.
Causes
No matter what type, aphasia is caused by damage to the language-dominant side of the brain. But many different things can lead to this damage including:
- Stroke
- Head injury
- Brain tumor (which can be cancerous or non-cancerous)
- Infection
- Dementia
Symptoms of Aphasia
Symptoms of the disorder can vary depending on the type of aphasia. But people with the disorder may:
- Speak in short or incomplete sentences
- Speak in sentences that don’t make sense
- Substitute one word for another or one sound for another
- Speak unrecognizable words
- Not understand other people’s conversation
- Write sentences that don’t make sense
Treatment
Some people with aphasia recover completely without treatment, but most people typically have some amount of aphasia that remains. The goal of treatment is to improve your ability to communicate through methods that may include:
- Speech-language therapy
- Nonverbal communication therapies, such as computers or pictures
- Group therapy for patients and their families
It’s important to note that aphasia can look very different from person to person with a wide range of speaking and understanding abilities. But no matter what kind of aphasia a person has, the family of the person affected should try their best to learn how to communicate with their loved one. Speech therapists can often be a huge help with this.
What Is Frontotemporal Dementia?
Frontotemporal dementia (FTD) is the most common type of dementia for people under 60 years old.
FTD is described by Johns Hopkins Medicine as “a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost” that caused the lobes to decrease in size.
The disease can alter changes in a person’s behavior, personality, language, and movement.
“These disorders are among the most common dementias that strike at younger ages,” Johns Hopkins explains. “Symptoms typically start between the ages of 40 and 65, but FTD can strike young adults and those who are older. FTD affects men and women equally.”
Common Types of FTD:
- Frontal variant (affects behavior and personality)
- Primary progressive aphasia (makes it difficult for a person to communicate and affects speech)
- Semantic dementia (affects the ability to use and understand language)
“A less common form of FTD affects movement, causing symptoms similar to Parkinson’s disease or amyotrophic lateral sclerosis (Lou Gehrig’s disease),” Johns Hopkins adds.
The cause of the disease remains unknown, however, specific subtypes of FTD have been linked to mutations on a few genes.
Symptoms of FTD
Common symptoms of FTD, which start gradually and progress steadily or rapidly, are:
- Behavior and/or dramatic personality changes, such as swearing, stealing, increased interest in sex, or a deterioration in personal hygiene habits
- Socially inappropriate, impulsive, or repetitive behaviors
- Impaired judgment
- Apathy
- Lack of empathy
- Decreased self awareness
- Loss of interest in normal daily activities
- Emotional withdrawal from others
- Loss of energy and motivation
- Inability to use or understand language; this may include difficulty naming objects, expressing words, or understanding the meanings of words
- Hesitation when speaking
- Less frequent speech
- Distractibility
- Trouble planning and organizing
- Frequent mood changes
- Agitation
- Increasing dependence
Of course, symptoms can vary as they are dependent on what part of the brain is affected.
“Some people have physical symptoms, such as tremors, muscle spasms or weakness, rigidity, poor coordination and/or balance, or difficulty swallowing,” Johns Hopkins explains. “Psychiatric symptoms, such as hallucinations or delusions, also may occur, although these are not as common as behavioral and language changes.”
Treating FTD
“Today, there is no cure for FTD, and no treatments available to slow or stop the progression of the disease,” the AFTD advises. “However, if you or a family member or loved one are affected, there are important steps that you can take to preserve and maximize quality of life. A growing number of interventions – not limited to medication – can help with managing FTD symptoms.”
Anyone in need of guidance and resources can call AFTD’s HelpLine at 866-507-7222 or email [email protected].
Caregiving Isn’t Easy; Recognize That You May Need Help
When a loved one is diagnosed with cancer or a rare disease like Wendy Williams, it can change life as you know it completely. Your attention will suddenly turn from your job and family to caregiving. And no matter how much you plan for your new role, the enormity of it can take you by surprise.
How to Be a Better Caregiver for Your Loved One
“Caregiving is a huge job. It’s going to impact your health and your physical well-being. It will impact your finances, your social life, your emotions, and your mental energy,” Amy Brown, nurse manager of Gynecologic/Oncology at Johns Hopkins Hospital in Baltimore, Maryland, tells SurvivorNet.
Caregiving can suck up every moment of your free time. Realize that you may need help. “I learned this the hard way myself,” Brown says. “I have been the caregiver to my dad for 12 years. And I’m a nurse and I’m designed and equipped to handle that, and I tried to do it myself and failed miserably.”
She stresses the importance of caring for yourself while you care for your loved one. “Get sleep, eat well, exercise. Find something that brings you joy every day, whether it is going for a walk, praying, meditating, watching a movie, listening to an audio book, or getting together with friends.”
Though caregiving can be a difficult and sometimes thankless job, it can be very rewarding as well.
Caregiving Isn’t Easy; Recognize That You May Need Help
“Even though this is not what you signed up for, this is not how you planned your life, and this may be the biggest crisis of your life that you didn’t see coming, it has the potential to be incredibly meaningful,” Brown says.
Don’t Hold in Your Feelings
Watching someone you care about struggle with illness is difficult enough, but to be suddenly dealing with the responsibility of caring for them can make the situation that much harder, particularly if you’re nervous you’re not qualified. While you, of course, want to do all you can for your loved one, it’s important to acknowledge your own needs as well.
“When you find yourself suddenly having to care for somebody, to be the primary lifeline for them, you very well could have mixed emotion,” Pastor Tom Evans, who cared for his own father as he went through Alzheimer’s, told SurvivorNet.
“Maybe it’s anger. Maybe this person never cared for you in the past, and now you have to do it for them. And maybe you’re gonna feel like you’re selfish when you need a break.”
Pastor Tom Evans Shares Advice For Managing Life As a Caregiver
Pastor Evans stressed that needing a break when you’re filling the role of caregiver is not selfish, it should be expected. No one can be a caregiver 24/7, 365 days a year.
“So, you need to find time where you’re not doing that and where others are helping you,” he said. “In those frustrations and that anger, take time to find someone to express that to, whether it’s a friend, whether it’s a pastor, whether it’s a neighbor, because as you work that out of your system, you’ll be better able to be there for them.”
Seek Professional Help If You Need It
When a stressful life event occurs, like a loved one being diagnosed with cancer, people respond in a variety of ways.
“The way people respond is very variable,” Psychiatrist Dr. Lori Plutchik told SurvivorNet. “Very much consistent with how they respond to stresses and challenges in their life in general.”
When struggling with a new stressor, there are many different, and healthy, ways to cope. Some people may seek out traditional therapy, and there should be no shame in that.
Psychiatrist Dr. Lori Plutchik discusses how people respond to stressors in different ways.
If you are struggling mentally due to the stress of caring for a loved one, there are many options that may be able to help you cope. These include:
- Seeking professional help from a psychiatrist or therapist
- Learning healthy coping skills
- Medication such as antidepressants
- Adding more physical activity to your routine
- Adjusting your sleep schedule
- Connecting with others via support groups
- Mindfulness and meditation
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.