Couldn’t watch Mike present his testimony live? Want to review what he shared? Read his official statement, given before members of the Nevada State Legislature, below:
Statement of Michael Splaine, Splaine Consulting
Committee to Study the Needs Related to the Behavioral and Cognitive Care of Older Persons, Carson City, Nevada, January 29, 2018
Let me offer four central points:
Dementia is increasingly understood to be a life course disease by key policy-makers, not merely a disease of older persons. Population aging is driving the numbers but slowly the public perception of dementia that it must necessarily be an older person quite disabled in the latter stages of the disease is changing, as some persons diagnosed early in the disease have put a different face on what it means to live with dementia. Perceptions are also changing in countries rich in scientific resources we can image changes in the brain before symptoms develop, and anywhere in the world we can begin to use the tools of public health to reduce population risk of dementia in late life. True, awareness raising activities have a more complicated story to tell with a 30-year disease process to describe as illustrated below, and everywhere in the world there is constant messaging needed that dementia is not a normal part of aging, but the life course view is taking hold increasingly in policy circles.
Original Concept by Mike Splaine; Peter Reed was a later contributor and this depiction was created by Matthew Baumgart.
Detection and diagnosis are a stubborn problem everywhere. Research shows that most people currently living with dementia have not received a formal diagnosis. United States figures suggest that only about 50% get a formal diagnosis, and more troubling is the fact that as many as 30% or persons with a diagnosis in their medical record have not been informed of their diagnosis.Without a diagnosis, there can’t be treatment, care and organized support or opportunity to volunteer for clinical research. This gap should be of interest to health systems as persons with impaired thinking and other chronic disease are expensive and have difficult lives navigating complex health decisions and treatment regimens and are frequently only seen in deep crisis.
A broader community of interest in dementia as a social issue is emerging. This is taking many forms, such as social media awareness raising and organizing by young students and workers in Indonesia, myriad dementia friendly community programs unique to place and culture or dementia being an agenda item at the World Economic Forum in Davos or at the Salzburg Global Seminar. In the wake of the Japanese tsunamis, natural disaster authorities have begun better planning for persons with dementia in those circumstances. Multiple international NGOs helped raise awareness during World Alzheimer’s Month. Even Pope Francis made a major address on World Alzheimer’s Day!
There are several special communities of persons with dementia for whom careful planning and action is needed. This include persons living in rural and frontier communities, persons with intellectual disability now experiencing dementia, persons who exhibit behavioral symptoms of their underlying brain disease, persons who live alone and last, persons with lifelong mental illness who now also have some form of dementia. Each of these groups is large enough for special policy and programmatic consideration under the umbrella of this interim committee’s mandate.
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