Lewy Body Dementia: Caregivers' Personal Experiences

According to the Lewy Body Dementia Association (LBDA), Lewy Body Dementia (LBD) is a progressive brain disease. They say that it also is the second most common cause of neurodegenerative dementia after Alzheimer’s. LBD is a spectrum disorder, meaning it can occur alone or in combination with Parkinson’s disease (Parkinson’s disease with Lewy bodies), or even co-exist with Alzheimer’s disease.

The LBDA states that LBD accounts for up to 20 percent of dementia cases in the U.S. That means that up to 1.3 million cases of LBD are diagnosed in the U.S. alone, with only 30 to 50 percent of LBD cases being accurately diagnosed, even in dementia centers.

As with most types of dementia, family members are the primary caregivers by default, at least at the beginning of the disease. They are usually the people who notice that something is not right with their spouse or parent. Again, like Alzheimer’s and most other types of dementia, care needs escalate with time. This ongoing care can be physically arduous and emotionally demanding.

Jeanne Gibbs, whose husband had LBD, illustrates her husband’s state of mind with the scenario below, which she handled like a pro:

Sometimes (but certainly not always!) the cause confusion in dementia can be determined and dealt with.

I worked at home to support us. One day my husband, Coy, was waiting for a rain-delayed baseball playoff game, and he came into my office.

Coy: Do we have umbrellas for both of us?

Me: Umm... for what purpose?

Coy: It is raining.

Me: Looking around. Yes. It is raining outside. It isn't raining in here.

Coy: Oh. Are you going to watch the game in here?

Me: No. I am working in here. Is it raining in the room where you are going to watch the game?

Coy: (a bit confused) No, I guess it isn't.

Me: All the people on TV watching the game probably have umbrellas, don't they?

Coy: Yes.

Me: They are outside. So you probably don't need an umbrella to watch in indoors. But, yes, we have several nice umbrellas in case you decide you want one anyway. Just let me know and I'll find one for you.

Coy: OK. Thanks.

He did not require an umbrella after all.

Education about LBD can help people manage their loved one’s care because the different types of dementia have different prominent symptoms. LBD is well known for situations much like Alzheimer’s, but also for hallucinations.

Paul Smith adds his voice to our conversation as he tells this story about how the hallucinations that can characterize LBD affected his dad.

One day I walked into the nursing home that Dad was living in at the time. He was probably in his fourth year or so after diagnosis. As soon as I opened the door I could hear yelling, and more importantly I could hear him yelling.

I rushed in and (saw) he had a vise like grip on the wrist of one of the aides. There were nurses trying to pull him off and he was struggling against them. I put myself in his line of sight and started saying his name. It took him a while to focus, but he finally did.

I said, “Dad it's OK. I'm here now and you can let go.” He slowly let go of her wrist. I immediately moved him away from the crowd to get somewhere a little more quiet to calm down. I asked him what was wrong and he had trouble verbalizing it to me.

In an epiphany I asked, "Dad what were you seeing?" He promptly replied, "She was trying to cut up that baby!"

The moral of the story is that sometimes when a person is acting out, it might not be pure craziness. He hallucinated her cutting up a baby and, of course, he intervened. He wasn't out of his mind, he was just reacting like any other normal person would.

LBD is difficult to diagnose

As mentioned in the HealthCentral article Lewy Body Dementia Often Confused With Alzheimer's, LBD is highly under-diagnosed, partly because it shares some characteristics with the more common Alzheimer’s disease, and partly due to lack of awareness that this different type of dementia is so prominent.

Robert Bowles, a retired pharmacist, turned dementia advocate and author of the blog Lewy Body Dementia: Living Beyond Diagnosis, says that he saw eight physicians in 18 months before being properly diagnosis with LBD.

Tom Clark, whose wife lived with LBD, agrees:

My late wife, Pearl, lived with Lewy body dementia for 10 years. Her dementia had been diagnosed 'dementia unspecified' for seven years. We finally received a diagnosis of LBD three years before she died in 2011. It was a blessing to learn about LBD and the correct treatment for her disease.

Most of these people have stayed active in helping other caregivers cope with the fact that their loved ones live with, and will eventually die from, LBD.

Sylvia Green, wife of a man who lived with LBD, tells us about becoming a Lewy Buddy:

My husband endured LBD for several years, but he died seven years ago. Ever since, I have volunteered to help raise awareness of LBD as an illness, and I have been, and am currently, a "Lewy Buddy." When the LBDA gets requests for information, I am one of the people who responds. The requesters are usually caregivers of newly diagnosed patients or wonder if their loved one has LBD.

Lewy body dementia is not as well-known as Alzheimer’s, but along with vascular dementia, it comes close to being as prevalent, especially when compared with early onset Alzheimer’s disease. Caring for loved ones with any type of dementia is difficult, to put it mildly. Living with dementia is even harder. Yet millions worldwide are sharing life with dementia, and this won’t change until researchers eventually find a way to prevent and cure these diseases.

Family Caregivers the Heart of Alzheimer’s Care

Carol Bradley Bursack
Meet Our Writer
Carol Bradley Bursack

Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. This experience provided her with her foundation upon which she built her reputation as a columnist, author, blogger, and consultant. Carol is as passionate about supporting caregivers work through the diverse challenges in their often confusing role as she is about preserving the dignity of the person needing care. Find out much more about Carol at mindingourelders.com.