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How Might We Reduce the Impact of Alzheimer's disease on loved ones and patients?

Alzheimers: To select while well the three criteria that when met will allow my caregivers to provide me a peaceful and speedy death.

Photo of Shannon Adkins
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Who is your idea designed for and how does it reimagine the end-of-life experience?

No one imagines an end of life that includes not recognizing their children, being unable to walk or talk or control their bowels. Alzheimer's disease slowly robs patients of everything that makes life worth living, and the economic and emotional toll for most extends well beyond the moment when these simple gifts are lost. But we can communicate now. We can say today that which we will not be able to say when we are in late stages of the disease. We should be allowed to advocate while we can.

I propose the following set of resources be made available to newly diagnosed patients with Alzheimer's, and to undiagnosed family members of patients. The resource would include a health directive that will allow any individual the ability to define the three criteria that when met would signify the moment when they elect to end their life with dignity. The process would be facilitated, perhaps through groups like Zen Hospice or the Palliative Care.

There is plenty of precedent for this kind of action with the advance care directive, and other resources such as Five Wishes.

The alternative is brutal - Alzheimer's patients, unable to swallow, die of starvation, thirst. Unable to walk, and untreated, the succumb to pneumonia, sepsis from untreated broken bones - all in a concerted effort to not extend life. How can that possibly be more humane?

Care for patients with Alzheimers, often 100% out of pocket, costs between $60,000-$100,000 a year. Unable to bear this financial cost for one year, let alone for 5 or more, caregivers (which are disproportionately  women), leave the workforce, costing even more on lost wages and risks to financial well being and stability. Nearly 10 million adult children (66% WOMEN) are caring for older parents in America. The unpaid care they provide is estimated to be worth $375 billion dollars per year in a report by Indiana University.

This is not ok, and we can do better.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

With direct ties to the Alzheimer's association of Northern Ca and the Zen Hospice program, I would be able to work with advocates, doctors, families and patients to gather signatures, and identify sponsors to support the realization of this vision.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

Legal Guidance
Medical Expertise

Tell us about your work experience:

CEO of Operational Transformation Consulting Firm, Future State.
Industries served include Healthcare, Life Sciences, Tech, Consumer Brand, Non Profit and Gov't.
Certified B-Corp, Woman owned and led.

This idea emerged from

  • An Individual

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Facts surrounding the prevalence and cost of Alzheimer's disease, provided by the Alzheimer's Association.


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Photo of Marije

Dear Shannon Adkins Thanks for sharing your story and idea. My mother also died from early onset Alzheimer and I fully agree, it is a not a dignified way to go. It is a slow, painful and evil process, for the patient and the carers. We must do better! My mother expressly wished for a dignified death, but even in the Netherlands (where she lived), no one would enter this debate. She was not cognitively sound, so the decision could not be made. I wonder, just like you, if there are ways we can express our wishes, and have them executed as the disease progresses? Perhaps using new ways of quantifying (and hopefully qualifyin) ourselves, we may be able to design ways to measure quality of our lives as set by our personal parameters. In the research phase I uploaded and idea to that effect, and I saw one by Jim Rosenberg too.  How would you design a dignified end-of-life for Alzheimer patients. The Quantified Impermanent Self 

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