LBD Awareness Month

From its start, raising awareness has been a part of the Lewy Body Dementia Association’s mission. For example, its brochure contains such comprehensive information that I call it the Cliff Notes for LBD. The LBDA has designated October as LBD Awareness Month, and has invited volunteers to help spread the word. People across the country have been quite creative: races, sales, cultural events, and more. Each event increases awareness, which in turn makes it more likely that LBDers and their families will receive the treatment and understanding they need—and deserve.

Promoting LBD awareness has been Jim’s mission for years. It’s the reason he co-founded the LBDA, the reason we wrote our book, A Caregiver’s Guide to Lewy Body Dementia and the reason we are now offering our LBD Trainer’s Kit to care facilities. Like all LBD survivors, Jim has his story: His first wife, Anique, was diagnosed with Alzheimers in 1999. Jim, a computer engineer, naturally went to the internet for information where he found that her symptoms matched LBD better than they did Alzheimers. But when Jim told this to Anique’s doctor, the man said, “I’ve never heard of that,” and continued to treat her for Alzheimers. (Go to LBDtools.com for more about his story and mine.)

Looking back, it was no surprise that Anique’s doctor had never heard of LBD. After all, it had only been identified as a specific disease in 1996. But fast forward to 2011: This summer, a residential care facility administrator told us, “Our staff doesn’t need your training because it [dementia care] is all about the same.” And when we mention Lewy body dementia to the general public, we still get more blank looks than we do recognition. I read somewhere that it takes about 20 years for a “new” disease to become known. In that case, LBD still has five years to go—until 2016.

Even though it is already October, it’s not too late to accept the LBDA’s invitation to increase LBD Awareness. The need continues throughout the year. And so visit the LBDA on Facebook for ideas about how you can be a part of their LBD Awareness campaign. Some are as easy as sharing a press release provided by the LBDA with your local newspaper. If you want to organize a community outreach event, go to www.lbda.org/go/awareness and download campaign materials. Let’s not wait until 2016---or later! Let’s make LBD better known NOW!

Support Groups

We had the honor of being invited to attend an LBD Support Group recently. It reaffirmed our belief in their value. They remind caregivers that they aren’t alone. Others are having the same or similar issues. When one member talked, we saw others nodding their heads. Yes, they’d been there. They knew. And sometimes, they had an answer. Something that has worked for them and might work for the speaker.

Like most support groups, there were people there in different stages of caregiving. A woman considering residential care with great guilt but equally great exhaustion. Another who had been through the same experience not long ago and was now beginning to see how she, with some restorative “me time” in the evenings, was able to be a better caregiver for her loved one. One woman who asked a question that received several answers but none she hadn’t tried: “I feel better knowing I’ve done all I can.”

A lone man in the group asked, “Do women ever get LBD?” And the unspoken question, once that was answered positively, was “and why aren’t the male caregivers here—the husbands and sons?” Sadly, we seldom see many men in support groups—even the online ones. They miss a lot.

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