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Don't wait for the crisis to prepare for Alzheimer's

  • Author:
  • Updated: June 29, 2016
  • Published November 10, 2014

November is National Alzheimer's Disease Awareness Month and National Caregiver Month. Alzheimer's disease is the most common form of dementia, caused by the death of brain cells and the atrophy of the brain. Alaska has the fastest growing senior population in the country. One in 9 over the age of 65 will face this disease. Eighty percent will be cared for by an unpaid family member, and about 90 percent of those caregivers will never get a break.

And it's expensive. In 2013, 33,000 Alaska caregivers provided 37 million hours of unpaid care valued at $466 million. The cost of health care for caregivers in Alaska in 2012 was $26 million higher than for Alaskans who are not caregivers. As we know, many Alaska families are separated by thousands of miles and expensive airline tickets, must take time off from work and have other complexities not necessarily faced by families in the Lower 48.

And it usually starts with a crisis.

Grandma fell, or grandpa got lost. The call might come in the night or early morning and seem out of the blue because these discussions often don't happen until it's too late for the primarily affected person to be a voting member around that table. The expense of long-term care insurance is often prohibitive for the average family, but as we learned during the making of our newest film, "Backing Out of Time," the tipping point comes when the loved one is no longer safe to leave alone.

"Backing Out of Time" began as a documentary film about the growing "sandwiched generation" -- the swelling numbers of baby boomers who are caring for children, working full time -- and who suddenly become caregivers for aging parents. But when our families coincidentally all seemed to be facing Alzheimer's as a primary concern, our focus shifted to a film about Alaska families facing the Alzheimer's journey together. This can be a heartrending, family-stressing situation at best, and a peek into that future is a cautionary -- but necessary -- tale.

Our cast of characters includes average working/middle class families facing a very challenging situation, and we follow them for more than three years. It is our intention to raise awareness around the caregiver's journey, and to influence our peers to stop and think about "How do I want my life to look should I be one of the 1 in 9?"

Personally, this work has had a profound effect. I am making a "Book of Mom" that will have favorite photos and memories; a list of the things that bring me joy and comfort, like copious amounts of fresh orange juice, terrific coffee, chocolate, a room with a view and down comforters; where the important papers are; which friends to trust with big decisions -- just in case that day comes when I can no longer express those needs and desires. And it will say, "I love you, son, even if I can't remember you are my son."

It can begin with a non-threatening discussion around the Thanksgiving table.

Please come see our film at the Bear Tooth Theatrepub at 5:30 p.m. Wednesday, and then have that conversation.

Mary Katzke is executive director of Affinityfilms, Inc. a nonprofit social issues media production company based in Anchorage since 1982."Backing Out of Time" will be shown at 5:30 p.m. Wednesday at the Bear Tooth Theatrepub in Spenard. General admission ($4) tickets remain on sale. A panel of experts will discuss Alzheimer's and caregiving after the film.

The views expressed here are the writer's own and are not necessarily endorsed by Alaska Dispatch News, which welcomes a broad range of viewpoints. To submit a piece for consideration, email commentary(at)alaskadispatch.com.

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