Caring Currents

Fear Alzheimer's? Try the Talking Cure

Last updated:

April 21, 2009

At least one in three adults fears developing Alzheimer's, says a new poll by HBO Alzheimer's Project/Harris Interactive Census. I'm surprised the number isn't higher. The poll also finds --- no surprise here "“- that concern is higher among those who have a parent with the disease and those who are 55 to 64.

Alzheimer's is the second most feared disease, after cancer.

At least these fears are percolating in 2009. A leading family educator in the world of Alzheimer's told me that when she organized some of the first support groups, participants insisted on having an expert come in and formally lecture to them. Nobody wanted to share personal experiences --- a key component of so many support programs today --- because they felt too ashamed. Kind of hard to idea-share and emotionally unload when each individual feels his or her own story is unspeakable.

This story took place in the dark ages of"¦the 1970s and 1980s!

Today, Alzheimer's talk is everywhere, even in rural places and even among older generations (if not entirely). That's to our collective benefit. Listen to 4 ways to lessen the scary nature of this beast through simple conversation:

1. Watch or join in on the national talk.

Beginning this month, look for a screening and discussion in your area of a new HBO documentary series, The Alzheimer's Project. These special events being held all around the country are sponsored by hospitals, Alzheimer's groups, and others. They're part of a multi-platform push in advance of four new films HBO is presenting to spark more national conversation about Alzheimer's.

The shows, which air over three days beginning May 10, are:

  • The Memory Loss Tapes. A documentary from the perspective of seven people who have Alzheimer's.
  • Grandpa, Do You Know Who I Am? Maria Shriver (whose dad had Alzheimer's) is the host; her husband, Gov. Arnold Schwarzenegger, has said she fears getting it herself.
  • Momentum in Science. A two-part scientific update on causes and treatments.
  • Caregivers. See if you recognize yourself in these profiles.

If you don't have HBO, you can [pre-order a DVD] (http://www.amazon.com/gp/product/B001UXJGJ2?ie=UTF8&tag=thealzsrearoo-20) of the shows, for June 2 shipment.

Okay, my commercial over. You'll probably also hear about the program elsewhere, but it's worth thinking about it in this context: The more Alzheimer's is publicized, the less it can lurk menacingly in the shadows.

2. Talk to your family, friends, neighbors, and colleagues.

If you're not using the words dementia or Alzheimer's when discussing an elder's situation if that's in fact what he or she has, you're fueling the stigma, whether you mean to or not.

It can feel really weird to say it, at first. There's an impulse to want to "protect" the dignity of the person who has the disease. Remember when being cryptic (or mum) was the norm about cancer?

Plus, once you use the accurate terms, other people are more likely to be forthcoming, with helpful stories about their experiences. (Kind of like when a woman experiences a miscarriage, suddenly people come out of the woodwork to supportively share their tales, which would have gone unmentioned otherwise.)

3. Talk to other caregivers.

Some people find it easier to warm up to being forthcoming about dementia care with others who are doing so. Find them on [community boards] (https://www.caring.com/community) or in hospital- or community group-run [support groups] (https://www.caring.com/local).

4. Talk to a professional listener.

Being on the front lines of eldercare often makes people more fearful of developing Alzheimer's themselves, not less, because they experience firsthand what a burden the disease can be. A therapist or counselor can help make that burden more manageable for you, which may in turn soften your anxieties about your future.

Talk therapy can be more financially feasible than you may think. Many insurance companies cover it. And a small investment in your psychological well being can pay off big by making you more productive or keeping you from getting sick and unable to work. And don't worry that you're not "crazy enough" or "it's not bad enough" to warrant getting help.

Wherever there's fear or anxiety, talking about it shines a light, and with that comes a soothing glow.