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Reporter's Notes: Beyond Alzheimer's

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This is the second of two stories born out of an afternoon at UCSF's Memory and Aging Center, where a team of scientists, led by Dr. Bruce Miller, is trying to tease out the differences between as many as 200 dementias that affect aging brains.

The two stories have a lot in common: Both introduce us to people who have lived with extremely difficult degenerative diseases: ALS in "Decoding the Emotional Brain," and frontotemporal dementia in this week's story. Both open up provocative questions about human nature. And neither would have happened without the generosity of a Northern California family – in this case, Cassandra Shafer, who drove down from Forestville with her daughter, Columbia, to tell me about Cassandra's husband and Columbia's father, Keith Jordan.

In these video clips, you meet Keith Jordan in the second half of his disease, after doctors at UC Davis and UCSF diagnosed him with frontotemporal dementia. The videos were taken at UCSF over the course of many hours doctors spent studying Keith and his symptoms. In them, we glimpse of two of Keith's FTD-caused obsessions: joke telling and music. (We also see one of the first symptoms to have emerged: his Jerry Garcia hairdo.)

At first glance, Keith's behavior might strike you as more eccentric than brain-damaged, which is precisely why FTD can take so long to diagnose. If you're a doctor with a 15-minute appointment slot, frontotemporal dementia might just look like a midlife crisis. What we don't see in the video clips are the five heartbreaking years that Cassandra spent trying to figure out what was happening to her husband – a search that included marriage and career counseling, the full gamut of conventional western specialists, yoga, meditation, chelation therapy, replacing every household cleaning product, every pot and pan, all the way to shamanic soul retrieval and exorcism – all while his behavior grew more erratic and difficult to be around. It's impossible to overstate the drain – both emotional and financial — that this search brought on Keith's family.

Keith died in May and Cassandra is still, she says, "inching her way" out of the "foreign land" that FTD plunged her into. As unlikely as it sounds, I think she takes some comfort in the fact that Keith's illness also gave doctors a chance to explore profound questions about human nature and the extent to which the structure of our brains determines who we are.

FTD can turn Democrats into Republicans, and vice versa. People with no interest in art begin to paint obsessively. As the neurons in Keith's right frontotemporal lobe (just behind the right eyebrow) died, his taste in music, his sense of humor, his relationships with his family members and friends changed completely. Our self, in other words, may owe much more to the way our brains are built than we'd care to acknowledge.

And what to make of the fact that this same part of the brain that shapes personality is also responsible for reading other people's reactions? People with some forms of FTD can't empathize with others (hear more about this in our slide show about FTD and art) or read the emotion on another person's face. Not only do they experience radical personality changes, but they lose the ability to sense others' reactions to them. In other words, how we define ourselves – whether we consider ourselves funny, smart, ambitious — seems to have everything to do with how others define us. We are all, in other words, people people.

Which begs the question: What about people raised in isolation, without the critical feedback loop of social interaction? What does FTD tell us, for example, about children who have been deeply neglected in orphanages? Or – taking another angle entirely — autistic people, who have trouble empathizing with others? What does self-perception look like in those who can’t perceive those around them?

If all this is giving you a headache, you might spend some time exploring the web extras we've produced for these two stories. Here, Bruce Miller explains why frontotemporal dementia can bring with it an artistic renaissance. And here, we introduce you to Matt Cheney and find out what his compulsive laughing and crying jags might reveal about emotion and the human brain.

Then use our blog, below, to let us know what you think.


Listen to the Beyond Alzheimer's radio report online, and watch our Web Extra: Dementia and Artistic Renaissance slideshow.

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Category: Health, Radio

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About the Author ()

Amy Standen is a radio reporter for KQED Science. Her email is astanden@kqed.org and you can follow her on Twitter at @amystanden.
  • EAM

    Thanks for this story, what a fascinating and poignant window on the human mind.

  • Amy Standen

    Thanks for writing, EAM. I appreciate the feedback.
    Amy

  • Julie

    Excellent video Amy. I lecture on this topic and am aware that there are few, if any, videos like this available for patients, their families and professionals to learn about FTD. Will it be available as a Itunes podcast or can I avail of it / purchase it for teaching purposes?
    Thanks also to the Jordan/Shafer family for sharing their story. Best wishes.

  • Amy Standen

    Hi Julie,
    Are you interested in the video clips of Keith Jordan? Or the slide show about artistic expression and FTD? I can certainly supply you with a CD of the radio (audio-only) piece itself — and yes, it's avaialble on iTunes if you search for KQED Quest — but there are likely some rights issues around the video clips.

    Glad you liked the piece.

    Amy

  • Julie

    Thanks Amy.

    Sure, I will have a look on Itunes, thank you. I completely understand the issues around the video clips; I just wasn't sure if these would exist seeing that they were available online anyhow? I have been searching for months! If there is any way that it could be used for teaching purposes at a Neurology Centre (I am a Neurologist) do let me know but in the likely event that this is not possible, I can direct my students and patients to your website. Not a problem either.

    Well done again. Really well put together, I'm sure Keith's family appreciate your work.

  • http://kqed.org mina

    Dear Amy,
    I was fascinated by the FDT. I have an Asperger's child and some of the social regulation irregularity is seen in Asperger's/Autistic children. I very much interested to know if there is any link with the Progranual Protein deficiency in children which results in Autism Spectrum. I would like to be in touch with Dr. Miller about this issue.

  • Amy Standen

    Julie,
    I should have thought to mention this before: UCSF has put together a YouTube channel for the purpose of edudcating people about FTD. You'll find some short clips of FTD patients there, along with doctors and caregivers describing the disease. A great resource: http://www.youtube.com/watch?v=dP4PoUkVy0U&feature=user

    For specific videos of Keith or other patients, I recommend you contact the Center directly.

    Best,
    Amy

  • Amy Standen

    Hi Mina,
    I know Dr. Miller is very interested in the potential for links between FTD and autism/Asperger's, though I don't believe he works on those conditions directly. You can reach the UCSF Memory and Aging Center through their website: http://memory.ucsf.edu/

    Thanks for writing, and good luck,
    Amy

  • http://www.kqed.org/ JP

    Thank you Amy. Dr. Miller diagnosed my father with FTD. Listening to your piece on NPR was a nice surprise as the media has not given this disease much attention.

  • http://www.thecaringspace.com Matt

    I spent nearly four years working in an Alzheimer’s/Long Term Care facility in Utah and I know the difficulties and pains associated with caring for a loved one. I personally got to know some great people I helped care for and I also became close with some of their families. I’ve seen a lot of resources that help. One in particular seems to be a great benefit: http://www.thecaringspace.com
    Please pass this link along if you feel anyone could benefit from it.