Podcast Summary: Deep Dive: What if It’s FTD?

Podcast: Dr. Laura Call of the Day
Host: Dr. Laura Schlessinger
Guests: Sue Freund and Esther Cain (MSN, RN, CDP, Director of Support and Education at AFTD)
Date: October 2, 2025
Theme: Understanding Frontotemporal Degeneration (FTD) through personal experience, expert insights, diagnosis journey, genetic risk, caregiving, family impact, and resources.

Episode Overview

This episode dives deep into Frontotemporal Degeneration (FTD), a little-known but profoundly impactful form of dementia. The discussion is anchored by personal testimony from Sue Freund, whose husband Billy died of FTD at 58, and expert insights from Esther Cain, Director of Support and Education at the Association for Frontotemporal Degeneration (AFTD). Together with Dr. Laura, they unravel the complexities of FTD: early warning signs, diagnosis, genetic risk, the unique emotional toll on families, and pathways to both practical and emotional support.

Key Discussion Points & Insights

1. Personal Story: When Subtle Changes Signal Something More

[04:00–14:40]

• Subtle Behavioral Shifts:
  Sue describes how her husband Billy’s personality and habits changed in his early 50s, well before anyone suspected dementia.
  • Became “very self-absorbed,” lost empathy, demonstrated compulsive behaviors (e.g., driving around the neighborhood blasting music), made inappropriate comments, and showed a decline in personal hygiene.
  • The initial suspicion: midlife crisis, depression, or even an affair.
• Detection and Diagnosis Journey:
  • Friends and even Sue’s children noticed something was wrong but didn't suspect dementia.
  • A family friend, a physician, directed Sue toward FTD after consulting with a neuropsychologist ([08:32]).
  • Confirmation required neuropsych testing, MRI, and CT scan—Billy never believed he was ill.
• Emotional Toll:
  • The process was confusing and isolating, with moments of self-doubt and marital crisis.
    • “I thought maybe he was having an affair. I thought he was having a significant midlife crisis…it has to be a severe midlife crisis because he’s a complete stranger from the person that I met and fell in love with.” – Sue ([07:55])

2. Understanding FTD: Clinical and Medical Perspective

[14:50–18:49]

• Common Symptoms:
  • Loss of empathy, poor executive function, disinhibition, personality changes, and lack of self-awareness (anosognosia).
  • Not just memory loss: “Memory is not the issue, but their behavior.” – Sue ([11:44])
• Typical Denial:
  • Many FTD patients, like Billy, are unaware of their symptoms.
    • “A certain percentage of FTD…they don’t know they have it.” – Esther ([12:15])
• Progression:
  • Average lifespan after diagnosis is 7-10 years, but it varies (as short as 3-4 years, as long as 20).
    • “If it’s a slow progression with really slow changes…odds are it’s going to be a slower progression throughout the disease.” – Esther ([17:30])

3. FTD Can Affect the Young

[18:49–23:37]

• No Age Limit:
  • FTD can appear in people as young as their late 20s or early 30s.
    • “Dementia is not necessarily a diagnosis of the old. Our brain is an organ like any other organ in our body.” – Esther ([22:48])
• Major Types of Dementia:
  • Alzheimer’s, Lewy Body, Frontotemporal Degeneration (FTD), and Vascular Dementia.
    • “There are many different types of dementia…I’ve heard 120 or 200 types.” – Esther ([23:45])

4. Genetic Risk, Prevention, and Family Concerns

[24:17–28:11]

• Familial Patterns:
  • About 40% of FTD cases show a family history, and about 20% have a known genetic mutation.
• Prevention / Mitigation:
  • “Lifestyle factors play a big impact in improving people’s quality of life and can delay the onset of the disease.” – Esther ([25:37])
  • Recommendations: exercise, heart-healthy diet, limiting alcohol and processed foods.
• Genetic Testing:
  • “I recommend that all the children in the family learn is what I recommend…Genetic counseling and testing is a big step.” – Esther ([27:04])
  • Sue recounts her own family’s emotionally fraught decision around testing ([27:30]).

5. Diagnosis & Medical Pathways

[29:05–33:00]

• When to Seek Help:
  • Use diagnostic checklists, document symptoms, and bring notes to appointments.
• Recommended Specialists:
  • See a neurologist, preferably a behavioral cognitive neurologist or at an FTD specialty center ([30:57]).
• Differentiating FTD and Alzheimer’s:
  • Though there are new biomarkers, diagnosis was historically based on symptom patterns; they’re separate diseases caused by distinct proteins in the brain ([31:48]).
    • “It was really hard to distinguish…most of the diagnosis was based on the symptoms.” – Esther

6. Family Survival, Coping, and Isolation

[39:29–44:06]

• Initial Reaction:
  • “I was ready to divorce him because I thought he was having an affair…this wasn’t the man I married.” – Sue ([39:29])
• Family Adaptation:
  • After the diagnosis, Sue and her children shifted focus to love Billy as he was, creating new memories and trying to cherish time together.
  • “You have to meet them where they are each day, because, you know, one day is better than the next and—or it isn’t.” – Sue ([40:12])
  • The family kept the diagnosis private, which contributed to a sense of loneliness:
    • “It gets kind of lonely in the end...because when you say that your husband has FTD or dementia, they only hear dementia.” – Sue ([43:09])

7. What Families and Friends Can Do: Support and Resources

[45:42–47:37]

• Experience of Isolation:
  • “There’s just a sense of you’re drowning and there’s nobody there to catch you.” – Esther ([45:42])
• Finding Community:
  • AFTD offers helplines, resources, support groups, and community for those impacted.
  • “The biggest thing that you can do if you have a friend with FTD right now…Don’t pull away. Lean in. Go in, help them.” – Esther ([46:11])
• Helpline and Advice:
  • Reach out for community, information, and emotional support.

Notable Quotes & Memorable Moments

• On the Shock of Early Symptoms:
  “He used to be interested in everything and everyone…And then he just started becoming very self-absorbed.” – Sue ([04:19])
• On the Difficulty of Getting a Diagnosis:
  “Who’s ever thinking of dementia at 50 years old? You’re thinking it’s depression, midlife crisis, bipolar—you’re thinking everything other than, oh, my goodness, my husband has dementia.” – Sue ([09:23])
• On Family Shift:
  “You pivot from being mad at him and wanting to desert him to wanting to create new memories…and trying to live life the best way we could.” – Sue ([41:02])
• On Living with FTD:
  “Until there’s a cure, there’s care, right? So, how are we going to approach it?” – Esther ([16:33])
• On the Importance of Community Support:
  “Show up, show up with cake, show up with flowers, show up and just say we’re here and be present. Don’t judge.” – Esther ([46:23])
• On Hope and Optimism Amid Grim Circumstances:
  “If I can go through my day knowing that today I was able to walk with somebody, then that’s good and there is hope.” – Esther ([48:54])

Timestamps for Key Segments

| Time | Segment & Highlights | |-----------|----------------------------------------------------------------------------------------------------------| | 01:55 | Introductions and episode overview by Dr. Laura | | 04:00 | Sue recounts the first signs of FTD in her husband | | 07:22 | Timeline of symptom progression and family reaction | | 08:32 | Friends and doctors begin to suspect FTD | | 10:26 | Testing and the shock of diagnosis | | 14:50 | Clinical explanation of common symptoms and denial (anosognosia) | | 16:27 | Management and progression expectancy | | 18:49 | FTD’s prevalence among the young; not “an old person’s disease” | | 23:45 | Different types of dementia | | 24:17 | Genetic and familial risk; prevention steps | | 27:27 | Sue’s family experience with genetic testing (stress, choices, implications) | | 29:05 | How to seek a diagnosis, what kind of doctor to approach | | 31:48 | Distinguishing FTD from Alzheimer’s and why testing matters | | 34:38 | Frontal lobe injury vs. FTD | | 39:29 | Sue’s candid thoughts on family experience, guilt, and coping | | 45:00 | How people with FTD typically pass away (medical, hospice, at-home care) | | 45:42 | Emotional support, AFTD helpline, and “leaning in” as community/friends | | 50:11 | Closing advice from Esther: No one has to face FTD alone—reach out for support | | 50:56 | Support group impact for families, including special groups for young caregivers |

Resources & Further Support

• AFTD (Association for Frontotemporal Degeneration):

  • Website: https://www.theaftd.org
  • Helpline: 877-507-7222
  • Support groups, information, resources for those diagnosed, caregivers, families, and friends.

• Key Advice:

  • Don’t ignore subtle behavioral changes, especially in midlife.
  • Seek specialist evaluation if FTD is suspected.
  • Get support—don’t handle the journey in isolation.
  • For friends and community: Don’t pull away—lean in and offer support.

This episode is a powerful, compassionate resource for anyone touched by FTD, as well as those seeking to better understand the nuanced challenges of dementia in adults under 65. The intertwining of raw personal storytelling and authoritative clinical insight makes the message both hopeful and pragmatic.