Download News Outlet Comments on Lewy body dementia (LBD)

News Outlet Comments on Lewy body dementia (LBD)
INSTRUCTIONS: Those of us in the LBD community are aware that Alzheimer’s is just
one type of dementia, but this is not universally known among others. Unfortunately, most
news outlets use the term “Alzheimer’s” when they should be using “dementia.”
In an effort to combat this misinformation, we are asking you to help educate the media in
your area. If you read or see a story on dementia that mistakenly uses “Alzheimer’s” when
they should have used the broader term “dementia,” please take a couple of minutes to
help them understand the difference.
The following information can be shared in a comment section, sent to the editor or sent
directly to the reporter. You can personalize this message to include your experience with
LBD or send it just as it is.
If someone else has posted the same information, do not post it again. You could just add a
couple of sentences showing your support.
Sample Comment:
I really appreciate the coverage XXX is giving to aging and dementia, because I know first-hand what it’s
like to see someone you love consumed by cognitive impairment.
I'm not writing, though, about how horrible the disease is and in fact, I'm not writing about Alzheimer's
at all. My (loved one, i.e. husband, father, etc.) has Lewy body dementia (LBD) and I'm writing about
what some in the medical profession have called the "Alzheimerization of dementia."
Not all dementia is Alzheimers. Dementia is the term used to describe a cluster of symptoms and names
like Alzheimers and Lewy bodies describe very specific and different diseases. Think of it like this:
Imagine a fruit bowl filled with apples, peaches, and pears. Dementia is like the fruit bowl and
Alzheimers, Lewy bodies, and other diseases are like the apples, peaches, and pears. They're all
dementias, but they're different.
Why is this important? Because 1.3 million Americans have Lewy body dementia (LBD) and medications
that can work well for Alzheimer's or Parkinson's disease (with which LBD shares some symptoms) can
have significantly negative consequences for people with LBD. This is a truly frightening situation for
anyone trying to care for a loved one with cognitive impairment.
Even more challenging is the quest LBD patients and caregivers face in obtaining a diagnosis. While
most physicians are familiar with Alzheimer’s disease, many have never heard of Lewy body dementia. In
research conducted by the Lewy Body Dementia Association, family caregivers reported that LBD was
NOT the first diagnosis in 78% of cases. More often than not, caregivers have spent years trekking to
multiple specialists before obtaining an accurate diagnosis – a frightening and exhausting experience for
both the patient and caregiver. A good neurologist is typically the one who is able to make the diagnosis.
I applaud XXX for its dementia coverage – it is timely and greatly needed as our population ages. I beg
of you, though, to be accurate in your coverage and not use Alzheimer's as a synonym for dementia. In
planning future programming, please give some coverage to the other dementias: Lewy bodies, Vascular,
Fronto-temporal, etc. Your audience will thank you.
And for anyone wanting to learn more about LBD, visit the Lewy Body Dementia Association's website:
www.lbda.org. It's filled with lots of useful information.