Glenn Lends a Hand to Save Brains, Soothe Hearts

The launch of a YouTube channel featuring UCSF Memory and Aging Center (MAC) videos about dementia, Creutzfeldt-Jakob disease (CJD) and other brain diseases was many months in the making. And while a number of physicians, caregivers and Silicon Valley entrepreneurs — as well as the family of Mike Homer, which donated funds for the CJD site — can take a bow, the creative tenacity award goes to videographer, producer, editor and Managing Media Director of the MAC, Shenly Glenn. Glenn, who joined the MAC staff in 2002, is an intellectual entrepreneur with activist genes. A Stanford graduate with a passion for computer animation, filmmaking and narrative, she describes herself as a “technology evangelist who likes to make things happen.” And in conceiving and shepherding the video project, which is actually two separate endeavors, Glenn has transformed what was once a job gathering MRI data on the brains of normal subjects into a video crusade. If crusade seems too strong a word, consider how difficult it would be to evaluate any of dementia’s many shadings without a detailed observational record. The same is true of the patient’s “bio-narrative,” a combination of life story and medical history, that MAC Director Bruce Miller, MD, has made a crucial element of the UCSF approach. Without both an observational categorization and a bio-narrative, it is easier to understand why more than half of the cases reviewed at the MAC reveal medication mistakes or misdiagnoses — some of which, like vitamin B deficiencies or brain cancer, require a completely altered treatment plan. The misdiagnoses troubled Glen, who felt that if awareness of all the different forms of dementia could be raised, more patients might be channeled into clinical trials where experimental treatments at least offer some hope. That is when her filmmaking instincts kicked into overdrive. “I believe that if you filmed patients with dementia and edited the footage into teaching modules, you could develop an instructional library that would reveal many of the nuanced manifestations [of personality and behavior],” she explains. Moreover, she felt a keen need to help “extinguish social taboos around brain diseases that manifest as behavioral disorders.” And so, with Miller’s leadership — aided by what she calls her “cowboy attitude” — Miller, Glenn, Howie Rosen, head of the MAC’s education core, and Joe Hesse, research database manager, applied for and came away with a large enough National Institutes of Health award to bankroll the project. Glenn takes her cinéma vérité seriously, and after winning over five families she’d met at the MAC, took up residence in their homes, camera in hand. “I followed the [dementia] patients into the shower, at breakfast and everywhere else. I had to have the camera on them all the time because I also wanted to record how they interacted with other family members.” Glenn’s house stays were usually finished in a week — “I tried to plan my stays when something was happening, like a birthday or an anniversary” — but she emerged with hundreds of hours of footage. Daunting as the editing task became, Glenn felt a personal responsibility to the families, who wanted their stories told in the hope of sparing others their frustration and pain. Distinguishing among the hundreds of subclassifications of dementia is enormously difficult, of course, and Glenn does not imagine that her instructional videos alone will revolutionize the field. The YouTube channel, however, has the potential to raise awareness of all of the dementias, including Alzheimer’s disease, frontotemporal dementia, CJD, Huntington’s disease and Parkinson’s. Its reach would extend far beyond that of the world’s neurologists and medical students, which is why Glenn took on the task of creating an entirely different set of video clips for the launch. “It was a challenge,” Glenn explains. “I needed to shoot a lot of new footage with physicians and caregivers.” Glenn explains. Often a one-person show, Glenn managed to post 20 at launch time. The videos range in length from 30 seconds to seven minutes. Topics also range from information for caregivers to the science of proteins and prions. “It’s been a collaborative effort,” Glenn insists, naming Caroline Latham, data analyst, and the person responsible for developing the CJD pages on the MAC site, and Joe Hesse, as just two colleagues who have worked in relative anonymity to build a supple and supportive web presence for the awareness-raising and educational content. As for Glenn, who once worked as a technology strategy consultant for such companies as Verizon and Goldman Sachs, she feels she has made her mark and is now looking for the next adrenaline rush. “I like getting things off the ground, seeing things that haven’t been created, and then making them real.” And if, as she says, you cannot really raise awareness of dementia without observation, then the video record she leaves behind for an aging America will be streaming through cyberspace for many years to come.