EP172: What is Frontotemporal Dementia?

This Is Getting Old Podcast with Melissa B PhD

All dementias don't look the same; they don't show up the same way that Alzheimer's disease does.

—Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN

Listen to today's episode where I talk about frontotemporal dementia (FTD), a rare kind of dementia. I'll walk you through how FTD is different from Alzheimer's disease and share insights into why seeking medical care is crucial if any of these symptoms are interrupting your life or the life of a loved one.

People with frontotemporal dementia tend to have clusters of symptom types that occur together like behavioral changes, speech and language symptoms, and movement conditions. The difficulty with FTD is that it can show up differently for different people and memory isn’t usually affected in the early stages, so it’s very difficult to diagnose. In fact, FTD is one of the rarest types of dementia. While around 6.5 million Americans ages 65 and above live with Alzheimer's disease, only 3% of those people have frontotemporal dementia.

IMPACT ON YOUNGER AGE GROUPS

Frontotemporal dementia mostly shows up in younger people, from as early as age 45 to 64, which is younger compared to other types of dementia. Due to inadvertent ageism in our healthcare system, providers may dismiss symptoms as something else because the person is younger than we typically expect a person to have cognitive issues.

EARLY WARNING SIGNS

It's important to note that the symptoms of frontotemporal dementia (FTD) can vary widely, and individuals may not exhibit all of these symptoms discussed in the podcast. However, one of the early signs of FTD often includes a change in personality or behavior, such as becoming socially inappropriate, impulsive, apathetic, or withdrawn. These psychiatric symptoms also delay getting to an accurate diagnosis or a misdiagnosis of depression or anxiety initially.

If you or someone you know is experiencing cognitive or behavioral changes, it is crucial to seek medical advice immediately.

CELEBRITIES' BATTLES WITH FTD

In the past year, two celebrities have been diagnosed with FTD, most notably Bruce Willis in February 2023; and in Feb 2024, Wendy Williams. Both are now bravely sharing their experiences with FTD to help raise awareness.

DIAGNOSTIC CHALLENGES AND BARRIERS

Just like with every other dementia, early symptoms of FTD can be subtle and often go unnoticed because they start slowly and progress over a long period of time. Another challenge is that FTD isn't as well-known as other types of dementia like Alzheimer’s disease, making it hard for primary care doctors and even big academic medical centers to recognize it.

The process of diagnosing this type of dementia is a long journey, and can take up to 2 to 3 years of various appointments, ruling out other conditions, and talking to neurology experts to get to the correct answer/ diagnosis.

The more we all understand FTD better, we can take steps towards being a more compassionate and informed community.

You can learn more about FTD from the Association for Frontotemporal Degeneration. This organization can help people living with disease, their families and caregivers connect in person and with online support groups.

Their website is theaftd.org and they have a helpline. The helpline phone number is 866-507-7222. You can e-mail them at [e-mail].

Be sure to check out more resources on my website at MelissaBPhD.com to learn more about brain health and dementia. And be sure to get your FREE downloads at:

10 Warning Signs:

https://melissabphd.com/10warningsigns/

Diagnosis Checklist:

https://melissabphd.com/diagnosischecklist/

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About MelissaBPhD

Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN. I am a nurse, nurse practitioner, nurse Please visit my website at MelissaBPhD.com to learn more about me, how you can work with me directly, and/or support future episodes of the podcast. Within the first 18 months of launching this podcast, we reached a ranking of top 10% globally.

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