Manage episode 285765326 series 1556353
In The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It, Jason Karlawish, physician and writer, combines deep research with personal practice as Co-Director of the Penn Memory Center. Part case studies, part history, part present assessment, and part future projection, Karlawish’s book presents a strong argument for recognizing Alzheimer’s disease as a crisis. However, listing numerous biomedical breakthroughs, political gains, technological innovations, and formalized help agencies, the author leaves the issue shimmering with hope. We can, in fact, assign dignity to dementia, support caregivers and loved ones, and help patients reclaim autonomy and self of self.
KEY TERMS, EVENTS, AND PEOPLE
- Dementia – disabling cognitive impairments (memory, attention, concentration, multitasking)
- Mild Cognitive Impairment (MCI) – noticeable cognitive impairments causing inefficiencies in daily activities, but not disability
- Alzheimer’s Disease – one of the most common diseases of the brain causing dementia and MCI
- The Alzheimer’s Association – formed as a self-help group in late 20th century by seven families incensed by the poor quality of care of absence of support for patients and families affected by Alzheimer’s disease
- The National Alzheimer’s Project Act – enacted by Obama authorizing Congress to have all Federal agencies to come together to create a national Alzheimer’s plan
- The “founding fathers and mothers” of Alzheimer’s – early 20th century included mostly German-speaking psychiatrists and neuropathologists; late 20th century included women caring for family members who, encountering an indifferent healthcare system, formed self-help groups
- Robert Katzman - wrote “the essay heard round the world” reframing senile dementia as Alzheimer’s disease
- Jerry Stone – wealthy Chicagoan whose wife had Alzheimer’s helped bring together the seven family
- Hilda Pridgeon – formidable feminist force instrumental in organizing the Alzheimer’s Association
- Bobbi Glaze – partnered with Pridgeon to form the Alzheimer’s Association designed for the middle class—the neither rich or poor—who need help
QUOTES FROM KARLAWISH
- “[The] “physical, psychological, financial, and moral suffering…adds up to a humanitarian problem [and] the solution isn’t simply better medical care.”
- “Short of a cure, short of a cure for each and every cause of dementia, we will have to learn to live with the disease.”
- “People are desperate to hold on to something that is very essential at least moral agency which is what allows us to think and decide.”
- “[Over the last several decades] the risk of developing dementia has been declining…The data suggests it’s about access and opportunity.”
- “A very mature, sensible way to live is to [recognize] that some degree of cognitive changes is going to be part of our lives.”
For extensive resources offered to Alzheimer’s disease patients and caregivers, check out the Alzheimers’ Association website.
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