Forgetfulness: It's Not What You Think
While Alzheimer's is not a prescription to stop living, the newly diagnosed have sad stories to tell. What is typically said and done after disclosing a diagnosis is indicative of a lack of exposure to this chronic disease. Once the facts are out, people tend to behave badly:
Family members are quick to feel stressed and prepare for the worst.
So-called friends are quick to disengage or disappear altogether.
Medical community is quick to prescribe pharma-centric treatments.
Employers are quick to disempower and dismiss.
General public is quick to stigmatize and discriminate.
Is the media partly to blame? From where I sit, I say the media is doing more damage than good. News reports and advertisements typically employ fear-mongering rhetoric like, "dreaded," "nightmare," "burden," "unraveling," "disappearing," and "sufferer" to paint a picture of total despair.
Forgetfulness and memory loss are not "normal" or expected outcomes of aging; yet biases, negative labeling, misunderstandings, and injustices prevail — this is how the world behaves toward men and women who are living with Alzheimer's disease. Stigmas are what many people who are living with dementia fear the most.
People who are living with early-onset Alzheimer's disease are pushing back on biases: writing books; giving speeches; raising funds for dementia organizations; creating blogs; engaging social media outlets; and producing videos, among other communication activities.
If you are so inclined to join the cause or want to learn more about creating a dementia-friendly initiative in your neighborhood, check out my Pinterest board, "Early-stage Alzheimer's Disease" for hundreds of innovative ideas for living with dementia.
In January 2006, the Alzheimer's Association established an advisory group composed of people in the early stages of Alzheimer's disease. The group is helping the Association provide the most appropriate services for people living with early-stage Alzheimer's, raise awareness about early-stage issues, and advocate with legislators to increase funding for research and support programs.
The Association continues to seek dynamic individuals living with early-stage Alzheimer's or related dementias to join the Early-Stage Advisory Group. This important group of advisors brings the unique perspective of persons living with the disease to key efforts of the national association, including advocacy, program and consumer awareness initiatives. For more information visit the Alzheimer's Association website.
How different our caregiver expectations would be if research professionals gave equal time to the study of positive outcomes for people living with Alzheimer's. To change the world's view of people living with Alzheimer's is a worthy goal. Won't you join me?