“I want to repeat, there is no other illness I know of where the medical and health care providers tell you to give up. To me, this is a preposterous and negative prescription. It is time all people with dementia and their families stood up for better advice and services that enhance well-being and quality of life.” –  “Rethinking Dementia, 2020,”  KateSwaffer.com

 

Connecting with Kate Swaffer in Australia during these pandemic months, we recently discussed observance of World Alzheimer’s Month. In her blog post for “Day #2,” she refers to the month as #DAM2020 (Dementia Awareness Month).

Why is this significant? #DAM2020 is inclusive. World Alzheimer’s Month (“WAM”) recognizes only one of the dementias – AD.  It is a distinction with a difference.

In this post for Day #2, “Rethinking Dementia, 2020,” she describes her experience when she was diagnosed 12 years ago as having been “stranded at sea without a paddle.” Having now become a leader in the global dementia community, she observes that not much has changed today for the person diagnosed with dementia and their families.

In a near-future post, we will be noting new terms introduced into our language by Kate. Kate Swaffer book - Whatever Happened to My Brain?  For this post, two will be included.  Kate tells me many people are now using the second one.  I recall first learning about this reference to her husband as “BUB” (Back Up Brain) in her book, What the Hell Happened to My Brain? (2016)

Similar Prescription

More than a decade before Kate’s diagnosis, I was “that daughter” when “Miss Ethel” was diagnosed with Alzheimer’s at age 80 and given a similar “prescription” for what Kate more aptly describes in 2009. My personal experience in the early years following Mother’s diagnosis was driven by two mantras which perseverated in my thoughts: “It’s about dignity”… And, “We don’t need to just roll over and take it.” Reflecting on that period, this would have referred to the pharmaceutical prescription which made Mother so sick. My father was subsequently diagnosed with Vascular Dementia – and provided with – yes, a similar prescription.

More Apt Description

By 2009, Kate coined a more apt description. She termed her experience from the day of her diagnosis going forward as a Prescription of Disengagement®. What’s this?  Kate states, “We are still being left behind in terms of equal access to health care, including rehabilitation, and being denied many of our most basic human rights.” Her article included in sagepub.com elaborates on what this means for the person diagnosed with dementia from the very first life-changing day: Dementia and Prescribed Disengagement™  To learn more about what has NOT changed, don’t miss Kate’s blog for “Day #2”:  Rethinking Dementia, 2020.

 

For readers who want to more fully understand a diagnosis of “Dementia-from-the-very-first-day,”  these references provide the most current, well-articulated, and first-person information.

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References:

Kate Swaffer, Author, “Rethinking Dementia, 2020.” Retrieved 9/2/20 from KateSwaffer.com

Kate Swaffer, Author: “Dementia and Prescribed Disengagement®.” Sage Journals, December 11, 2014. Retrieved 9/2/20.

Kate Swaffer - dementia leader and influencer Kate Swaffer is living with younger onset dementia. She is an Author, Activist, Academic, Keynote Speaker, and recipient of many honors and awards. In 2017, she was named Australian of the Year in South Australia. In recent weeks, she became part of our esteemed group of Influencers included here on A Beautiful Voice website.

 

Author: Susan Troyer