| Today is the designated World Alzheimer's Day. Held on September 21st of each year, organizations and advocacy groups focus efforts on raising awareness--advocacy speak for marketing and fundraising.  | "Although advocacy groups have some legitimate interests in common, industry is the one with the deep pockets, usually much more than these organizations can raise from individuals or foundations. Therefore advocacy organizations have increasingly been shown to advocate for clinical guidelines, drugs, and policies that are not in the best interests of patients--but more in line with industry sponsors."--from book proposal Alzheimer's Disease: The Brand |
As the Alzheimer's Association struggled for an identity, the name evolved and with it--the role of public sources of funding.
“We are the world’s leading voluntary health organization in Alzheimer’s care,
support and research.”—Alzheimer’s Association
Additional topics discussed in the evolving book, Alzheimer's Disease: The Brand, include the balance sheets of a well-funded non-profit patient advocacy group as well as how funds are channeled to local chapters. Many of the largest advocacy chapters have separated from the Alzheimer’s Association in the last year, disagreeing with their priorities of research, and centralization of resources. The deprioritized local programs actually help people and families dealing with dementia.
I recently discovered an article originally published in Harvard Business Review in 1977. The discussion of organizational learning sheds insight on how "change" can most effectively be initiated--if the current culture is supportive.
Organizational learning is a process of detecting and correcting error. Error is for our purposes any feature of knowledge or knowing that inhibits learning. When the process enables the organization to carry on its present policies or achieve its objectives, the process may be called single loop learning. Single loop learning can be compared with a thermostat that learns when it is too hot or too cold and then turns the heat on or off. The thermostat is able to perform this task because it can receive information (the temperature of the room) and therefore take corrective action.
If the thermostat could question itself about whether it should be set at 68 degrees, it would be capable not only of detecting error but of questioning the underlying policies and goals as well as its own program. That is a second and more comprehensive inquiry; hence it might be called double loop learning. When the plant managers and marketing people were detecting and attempting to correct error in order to manufacture Product X, that was single loop learning. When they began to confront the question whether Product X should be manufactured, that was double loop learning, because they were now questioning underlying organization policies and objectives. -- Double Loop Learning in Organizations by Chris Argyris Harvard Business Review 1977
Think about first-loop learning as our short-sided approach to Alzheimer's Disease prevention or research. We think if we develop diagnostics or prescribe drugs to remove amyloid plaques and neurofibrillary tangles--viola! The target was defined and we adjusted actions to be able to measure our success.
First-loop learning identifes a drug or drug class that lowers the targeted plaques or tangles. Now when we consider the second-loop learning--things get uncomfortable. We need to question the defined target. Our first-loop brain has verified that the problem is "solved". But what about patients with normal cognition having brains riddled with plaques? Do we have the right target? Is it possible to identify a monotherapeutic target for a chronic disease with metabolic derangements?
What we actually need is whole-system redesign.
First-loop learning identifes a drug or drug class that lowers the targeted plaques or tangles. Now when we consider the second-loop learning--things get uncomfortable. We need to question the defined target. Our first-loop brain has verified that the problem is "solved". But what about patients with normal cognition having brains riddled with plaques? Do we have the right target? Is it possible to identify a monotherapeutic target for a chronic disease with metabolic derangements?
What we actually need is whole-system redesign.
Hand in Hand--Couple Fights Alzheimer's Together
Even when one is diagnosed with an illness, it should not define them.
Photographer Allison Hess
I am choosing to celebrate today thinking about the day to day with my dad during his Alzheimer's journey. Not all bad days, not all good days, but precious memories all the same. Read the article above for a heartfelt series of photographs and observations by Allison Hess.
