On 25 June 2010, Ken Kosik, M.D., a neuroscientist at the University of California, Santa Barbara (UCSB), and the executive director of Cognitive Fitness and Innovative Therapies (CFIT), led a Webinar about CFIT, which he describes as "the first full-service, community-based ‘cognitive shop’ in the nation."
Anyone who cares for a person with Alzheimer disease quickly slams up against the frustratingly fragmented nature of medical care. Family members can spend exhausting weeks shepherding a confused loved one from the internist to a neurologist, then a psychiatrist, with perhaps a detour to an endocrinologist to discuss the patient's diabetes, a urologist to try to address incontinence issues, with stops along the way to consult a nutritionist, a social worker, perhaps a genetic counselor. All the while, the caregivers are wondering if they can find a physical therapist to help keep the patient mobile. How about a meal service that would have a nutritionally correct, delicious dinner waiting for them when they stagger in through the door after 12 hours of sitting in hospital waiting rooms?
Kosik spent many years caring for patients at Boston's Brigham and Women's Hospital, and thought there had to be a better way to serve the complex needs of patients. When he was recruited from Harvard University by the University of California, Santa Barbara to co-direct the Neuroscience Research Institute, he saw an opportunity to turn his ideas into reality, and founded CFIT, which opened its doors last year in Santa Barbara (see ARF related news story). The center's goal is to move Alzheimer’s care out of the hospital setting and instead combine all of a person’s cognitive needs—diagnostic, social, psychological, practical, treatment-related—under one roof in a homey, friendly setting. CFIT aims to serve its already impaired clients in a more holistic way and help younger clients delay the impairment that often comes with aging by taking proactive advantage of new research about mid-life risk factors for late-life dementia. Kosik has now written about this approach in a just-published book, The Alzheimer's Solution: How Today's Care Is Failing Millions and How We Can Do Better (by Kenneth Kosik and Ellen Clegg, Prometheus Books, 2010).
One year later, how is CFIT working? What lessons have been learned along the way? Can the CFIT model be emulated more broadly? What other ideas are people trying out? Joining Dr. Kosik for the discussion were Pierre Tariot (Banner Alzheimer's Institute), John Ringman (UCLA), and Suzee Lee (UCSF).
"A lot of the services that Alzheimer’s patients and their families really need are non-physician services. The physician is an important piece, but it’s not necessarily the main piece. In fact, after the diagnosis is made, what the physician can do becomes diminishingly small. If you want to go into other settings, you really have to put together your own package. Whom are you going to talk to about diet? Whom are you going to talk to about social work? There’s nothing where this all exists in one place.
Something else has happened that has made it even more important to do what we’re doing. That is the realization that if you intervene in mid-life, you can actually delay the onset of Alzheimer’s, or if you have it, you can slow its progression. The data for those interventions, most of which are lifestyle and medical optimization, are by now unequivocal. If we’re really going to have an impact on this disease, we have to be able to recognize it before it even happens. The best time to treat Alzheimer’s is before it strikes."
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View Comments By: Mona Johnson — Posted 15 July 2010
I admire Dr. Kosik's efforts to improve care for people concerned about memory loss. After listening to the Webinar and reading his book, The Alzheimer's Solution, I can say that the cognitive shop concept he describes would have been attractive to my family when my father started to develop dementia.
Neither the Webinar nor his book seems to me to make a clear distinction between care and prevention. Even though the content of programs for prevention and for care might overlap to a large extent, I think there are some reasons to consider them separately.
First, there is still a stigma associated with Alzheimer's and dementia, and in my experience, the non-diagnosed don't want to be lumped in with the diagnosed.
Second, funding/commercial interest might be different for prevention versus care.
Third, as discussed on the Webinar, it's expensive to provide the kind of care envisioned by Dr. Kosik. In his book, he points out that some of CFIT's services could be offered online. This could be less expensive, but may not be a good fit for those needing more...
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I admire Dr. Kosik's efforts to improve care for people concerned about memory loss. After listening to the Webinar and reading his book, The Alzheimer's Solution, I can say that the cognitive shop concept he describes would have been attractive to my family when my father started to develop dementia.
Neither the Webinar nor his book seems to me to make a clear distinction between care and prevention. Even though the content of programs for prevention and for care might overlap to a large extent, I think there are some reasons to consider them separately.
First, there is still a stigma associated with Alzheimer's and dementia, and in my experience, the non-diagnosed don't want to be lumped in with the diagnosed.
Second, funding/commercial interest might be different for prevention versus care.
Third, as discussed on the Webinar, it's expensive to provide the kind of care envisioned by Dr. Kosik. In his book, he points out that some of CFIT's services could be offered online. This could be less expensive, but may not be a good fit for those needing more care than prevention. Perhaps the more intensive care services should be provided in person, but prevention services aimed at a younger and less cognitively challenged audience could be provided online and through mobile phone service. Text4Baby, a public-private partnership, might be an interesting model to look at.
No matter how we move forward with Alzheimer's care and prevention efforts, I think it will be important for programs like CFIT to actively seek input from people with memory loss (not just their caregivers). We pay a lot of lip service to "patient-centered" care, but don't always seek advice from those most affected. I have found that people with memory loss, particularly those with young-onset dementia and those with strong family histories of dementia, are quite articulate and have given a lot of thought to care issues. They should be valued advisors and participants.
Webinar: A Webinar is a seminar conducted remotely over the Web. Attendees view the slides through their Web browser and hear the presentations over their own telephones.
Registration: All participants are to register by clicking on the "Register for the Webinar" link.
Access: After you register, you will receive an e-mail with a link to the Webinar and a phone number.
The Alzheimer Disease Early Detection Surveys were designed to gauge perceptions and knowledge of early detection of Alzheimer disease as a follow-up to our Early Detection Webinar. The surveys were developed in collaboration with the Geoffrey Beene Foundation.
View Researcher Survey Results [.pdf].
View Public Survey Results [.pdf].
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Webinar: A Webinar is a seminar conducted remotely over the Web. Attendees view the slides through their Web browser and hear the presentations over their own telephones. 
