Two Types of Lewy Body Dementia

Last week the blog was about the symptoms leading up to LBD. This week is about the two different types of LBD. Last week's blog mentioned that LBD can show up either before or after movement issues. This is important because how it originally shows up determines its name.

If the Lewy bodies follow that path described in last week's blog, and travels from the midbrain into the cerebral cortex, then the dementia that follows will be called Parkinson's with dementia, or PDD. However, about 50% of the time, the Lewy bodies start in the cerebral cortex and spread out from there. When that happens, the disorder is called dementia with Lewy bodies. In each case, symptoms depend on the area of the brain affected. That is, when the Lewy bodies are in a certain area of the brain, the symptoms will be similar, no matter where they started. Therefore, Lewy body dementia has become an umbrella term that refers to both kinds.

Dementia with Lewy Bodies (DLB): This describes the type of Lewy body dementia that starts without motor symptoms. Diagnosed onset is from age 40 through 80, with the average in 70's. It is not uncommon for a care partner to say later that they remember certain symptoms starting much earlier, especially RBD and anger management issues.

First symptoms are often not recognized because they seldom include memory loss:

• Active dreams (RBD) can start many years before any mental problems are noticed. Jim's first wife, Annie, had these. They just laughed about them, and considered them an idiosyncrasy that didn't really cause any problems.
• Executive skills gradually fade. These include skills such as decision making, doing sequences, planning, and thinking in general. One woman, a supervisor in a busy office had to take an early retirement. She had became unable to file reports; her ability to alphabetize in a sequential manner was damaged. People with LBD tend to loose these skills well before losing the ability to remember names and events.
• Anger management issues are common, due to diminished impulse control and damaged thinking skills. That is, a person may perceive a slight or other problem where there is none and then become angry when others don't see the same issue. In the workplace, this can be serious. One man, a well-loved school counselor began angrily accusing his work-mates of lies and such. When his irrational behavior spread to his students, he was warned that unless he changed his behavior, he would be fired. Luckily, he had a driving accident that required him to see a doctor. The doctor diagnosed him with LBD and he was allowed a medical retirement.
• Hallucinations are another early symptoms. They are common with most dementias, but tend to show up much earlier with LBD than others such as AD. In fact, they are often the first symptom recognized as a true problem, and the one that drives a couple to the doctor.

Parkinson's with Dementia. When person with Parkinson's (PD) begins to have mental issues, this is called Parkinson's with Dementia (PDD).We believe that everyone with PD will eventually develop some dementia symptoms...if they live long enough. That usually starts about 15 years after a PD diagnosis, but it can be much longer. Onset for PD can be as early as 30 but is more likely in the 60's. (However, people with early-onset PD are less likely to experience early dementia.) The person who arrives at dementia via Parkinson's, has some advantages and some disadvantages.

The advantage is that most people are aware that dementia can be a symptom of PD. Therefore, when the odd behavior starts, people around them are more likely to recognize it for what it is and not, as in the example above, a behavior issue that needs to be changed. With PDD, the first symptoms are usually attributed to PD alone because they occur so often with it. Active dreams and slower thinking both fit this category. But when hallucinations appear, a doctor will usually start considering the possibility of dementia. By then, executive skills will likely have been affected as well.

The disadvantage is that that PD doctors are movement, not dementia, specialists. Preserving mobility is their primary goal. However, PD meds are anticholinergics. That isn't a problem until the Lewy bodies get into areas of the brain where they begin causing cognitive symptoms. Then the PD meds may increase cognitive symptoms. With PDD, a person needs a doctor that understands that treatment is a balancing act, with some mobility forfeited for better cognition, and vice versa.

Mixed Dementia. When types of LBD are discussed, mixed dementia also needs to be addressed. The truth is that people usually don't have just one kind of dementia. Even if a person is only diagnosed with LBD, they are likely to have Alzheimer's as well. Or maybe they have vascular dementia. Each of these will have different early symptoms and this cause a doctor to have difficulty with the diagnosis. The bottom line is that if there is a possibility that a person has LBD, that is the one to be concerned about because of the drug sensitivities involved. If you treat a person as though their dementia is LBD, they will do fine, no matter what kind they have. If you don't, they could be given a drug that LBD doesn't tolerate well, with possibly dire results.

For a much more involved description of all of the above read our books (below).

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
RBD: REM sleep behavior disorder (also called Active Dreams)
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
MCI-AD: the form of MCI that precedes AD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Meeting Old Friends

A while back, we met up with some old friends. It was a bittersweet time…Donna was no longer the young bride I made the wedding dress for over 30 years ago. She was still petite and shapely but she shows her age, which is close to mine. Ben isn't the strutting young man I remembered either. He's now white haired, hesitant and newly diagnosed with PD. This disorder shows up differently for each person. For many, a first noticeable symptom is tremors. But Ben doesn’t have tremors. For others, poor posture and balance are common. Ben doesn’t have this either.

But he is beginning to be forgetful. “I get so discouraged,” he says. “I read a whole page and when I’m done, I can’t remember what I read.” Then he grins, “But I can still run!” He seems to be as physically fit as his wife. I wonder if he’s been misdiagnosed and actually has DLB, dementia with Lewy bodies. It can start with symptoms like this instead of movement problems. They said that he’d been pretty bad…couldn’t even dress himself before changed doctors. The new doctor changed his meds and now he’s much better. How often we hear this! Those PD drugs can really do a number on a person’s thinking abilities. I can’t help wondering what he’d be like if they decreased his PD drugs he’s on now, or even stopped them entirely. Maybe he wouldn’t be able to run anymore. But maybe he could remember what he read…

Ben can still speak clearly and easily but he says, “I’m losing my voice—it’s a lot softer than it used to be.” He’s been attending Big and Loud classes and says they help. I also notice that his facial muscles are not allowing him to be as expressive as I remember either. He credits Donna with his successes. “She keeps me moving,” he says. “We walk the dogs several miles a day,” she says. She adds, “He’s right. I make him do it. I know he has to keep moving.” We gave them both kudos for the great exercise program they have going and reminded then that the exercise is as good for the mind as it is for the muscles.

Donna says that several years ago, Ben traveled to his sister’s funeral and came back "a different man." More like he is now. Ben talks about his last job, which was very stressful followed by that trip which had also been a stressful time filled with family dissention. “Did all that stress cause the PD to show up?” he asked.

“No, but it might have made it happen sooner,” I answer. Our bodies are very efficient at fighting off a lot of things that we aren’t even aware of. Adding a certain amount of stress actually makes them work better. We function better with a bit of challenge. But when the stress becomes greater than we can handle, it becomes destructive. That is, it becomes a priority and the body’s resources go to trying to managing the stress instead of other functions, like fighting off unwanted intruders, diseases, and the like. Age does the same thing as the body wears down and can’t be as efficient anymore. And so Ben would probably still have developed PD, but the stress may have hurried it along. Ben and Donna work now to keep stress at a minimum.

“Ben sleeps a lot,” Donna confides. I reassure her that this is normal...living with PD, or DLB for that matter, is hard work. And they are still quite social, going to church, Ben's men’s group, out with friends, and such. Each of these events is likely to bring on a bout of Showtime, (where he appears better than he is at home with just Donna) and this takes a lot of energy too. Later, though, I wondered if he might be depressed. Several times he voiced his unhappiness with having PD…not unreasonable feeling. No one WANTS this baffling disorder! Depression due to the news that one’s golden years aren’t going to be what was expected is a common reaction. Sadly, depression is also be a common Lewy body symptom. We suggested that Donna and Ben talk to his doctor and ask about some safe anti-depressants. There are some that usually work fairly well with the Lewy body disorders.

My friends are managing well, or at least as well as they can with this confusing disorder. Jim and I encouraged them again to follow up on the depression issues and to continue with their physical and social endeavors. We added that Donna needs to find a support group and she agreed to work on this. I hope she does. Like most caregivers, she is less diligent about her own care than she is about her husbands. Maybe we should have caregivers for caregivers!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.