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Alzheimer's and caregivers educational event -- no tech, low tech
Big conference, lots of empathy and caring. It's been a while since I attended an event exclusively focused on Alzheimer's -- I wondered if the curiosity about technology potential I encounter at so many other events would be duplicated. The 2010 Alzheimer's Educational Conference in West Palm Beach kicked off yesterday -- attended by professionals and caregivers, exhibit hall filled with senior housing offers (dementia units, respite), hospice and home care agencies, educational programs, local resellers, elder law services, and research programs. The two morning keynotes typified the tone and the theme: Dr. Thomas Kodadek of the Scripps Research Institute talked in great molecular detail about a 'promising' new test for Alzheimer's, and Dr. Louis Benson gave an exhausting and lengthy speech about how to sustain your positive energy in the face of caregiving stress.
Tiny signs of tech. A few products were featured in the exhibit hall, ads, and in sponsorships --PositiveID (microchip and Personal Health Record) and LifeGuard30.com (portable medical records). Several care management organizations displayed PERS (Philips Lifeline with Auto Alert, LifeCall, MobileHelp) devices and medication dispensing (SimpleMed). CareTrak was there, with its wearable RF transmitting bracelet -- a competitor to LoJack's SafetyNet. At various booths, when I asked, I was told about the unreliability of cellular and GPS technologies. And you can read the session list linked to the event to see that there were no sessions that mentioned or suggested to caregivers that any technology in the home was useful, despite extensive coverage in the press of what's what, including the GPS Shoe from GTX.
Design for all -- not universal design -- and no tech. I checked out one session on home design for aging in place. Jill Poser, CAPS-certified in the 'growing Aging in Place Movement in South Florida,' talked about the paradigm shift from ADA compliance to a new variant of Universal Design -- 'Design for All' a philosophy that design should accommodate all needs from the beginning (in sharp contrast to 55-plus housing which ignores potential future frailty. She provided home diagram after home diagram of changes to a home that would make it safe for a family member with Alzheimer's. A few samples: take the knobs off the stove (no CookStop), put a lock on the refrigerator, disable the garbage disposal, cover mirrors, place bed against wall to avoid falling out, install motion activated lighting for bathroom, and at least 50 other ideas to make the home safer -- especially if the Alzheimer's care recipient was left alone. However, she did not mention any remote activity monitoring, fall detection, webcams, or PERS devices -- and when I asked about it, she cited cost as prohibitive (also echoed in the room, quickly dismissed).
I left the event in a gloomy mood. There's no cure for Alzheimer's and most Alzheimer's sufferers are cared for in the home -- it seems like there are monitoring technologies that could give a caregiver respite, but none were discussed. Yet caregivers are suffering terribly, especially as the disease progresses -- an earlier session described them as mostly women, mostly older, those with chronic disease having a 63% higher mortality rate. They are committed to a task that becomes nearly impossible towards the end; and for many caregivers, it is followed by their own collapse.
At the end of the keynote presentation on the prospective new test for Alzheimer's, the first question from the audience to this cheerful and unsuspecting scientist was defiant: "What are you doing about those who already have Alzheimer's today?" Why, nothing, he said, as I left the room.