Posted by: Nancy | March 26, 2011

Name the demon

It’s an odd phenomenon. Faced with a tangible and real risk, some will turn away. Ignore it. Deny it.

Why? It’s hard work to admit that things go wrong. It’s even harder to prepare for the risk.

My sister, an inspiration to me, is facing a terrible risk. She has Down Syndrome, and now, as an adult, she faces a new potential demon in dementia or Alzheimer’s disease. I use the words purposefully — I’ve seen this demon before, within my own family. It frightens me.

That’s why I’m so grateful for people here and elsewhere who are gathering courage to battle it.

  • The Down Syndrome Guild of Kansas City has launched an initiative, called the “Down Syndrome Lifespan Support Project,” to provide resources to attack the medical, legal, financial and emotional challenges of caring for adults with Down Syndrome and dementia. (Full disclosure: I’m part of a sibling support group that’s included in this project.) There’s more information about this nascent project in the latest DSG “Connections” newsletter (see page 12).
  • 20110310-NAT-Down-Syndrome_and-Alzheimers.pdf Download this file


    Siblings Are Great Advocates is the name of the support group just mentioned — founded by Sarah Jurcyk and Chris Taylor, tenacious and relentless and inspiring in building connections and creating support. I’m so grateful to be part of this group and its many siblings who are so willing to share experiences and work toward helping others.



From author Terry Pratchett, writing about his own Alzheimer’s condition:

“What is needed is will and determination. The first step is to talk openly about dementia because it’s a fact, well enshrined in folklore, that if we are to kill the demon then first we have to say its name. Once we have recognised the demon, without secrecy or shame, we can find its weaknesses.”

I’m attaching a fabulous resource I found (through SibNet) from Australia, where the government is taking a remarkably clear-headed approach to caring for its people, starting with real information to face the challenge.

20110310-NAT-Down-Syndrome_and-Alzheimers.pdf Download this file



Attacking this demon will take thousands of us, each taking our own steps to first identify it and then preparing for the fight.



  1. My hero!

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