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.

Lewy Body Dementia Precursors

Last week the blog was about how dementia is a symptom of many different cognitive, or mental, dysfunctions, with the main players being Alzheimer's, Lewy body, Vascular and Frontotemporal dementia. Readers also learned that dementias like to hang out together and that even if a person is diagnosed with one kind, an autopsy will likely show that there was at least one more.

This week's blog is about the symptoms leading up to Lewy body dementia.

Like Alzheimer's disease (AD), LBD is caused by normal proteins that become damaged, and then, cause more damage. In the case of LBD, it is the alpha-synuclein proteins that "misfold" into Lewy bodies. These round sticky masses then attack certain neurotransmitters, the chemicals that pass information from neuron to neuron. While AD proteins tend to stay in the cerebral cortex, Lewy bodies migrate, and can spread throughout the nervous system. Thus, they cause a great variety of symptoms. What these symptoms are depends on where in the body the Lewy bodies are located.
One question we often hear is "What causes the proteins to misfold and turn into Lewy bodies?" Well, the answer to that appears to be two-fold. First, a person has to have the genetic tendency. And then they have to be exposed to an environmental toxin. (See the 11/7/14 blog, Genes and Environment, for a more thorough answer to this question. I'll also be talking about it again in a future blog about something called "telomeres.")

Chronic Constipation. Annie, Jim Whitworth's first wife, and his original reason for being on this journey, had chronic constipation as a young woman. Her more conventional LBD symptoms of hallucinations and poor thinking skills didn't appear for almost a half century later. One thinks of LBD being a "brain disease" but it is more a "nerve" disease. Since there are more nerves in the gut than anywhere else in the body, except for the brain, it makes sense that one of the first places Lewy bodies may show up is in the intestinal tract, which isn't nearly so well protected.

REM Sleep Behavior Disorder (RBD). The chemical switch that prevents movement during sleep is situated on the brainstem in the pons. When Lewy bodies find their way here, they damage the switch and people act out their dreams. They can be very active, hence the very accurate description of "Active Dreams." About 50% of those with RBD go on to develop LBD eventually. See our 11/02/12 blog, Active Dreams, for more about RBD.

Parkinson's disease (PD). PD is a movement disorder that occurs when Lewy bodies in the midbrain attack dopamine, a neurotransmitter instrumental in fine motor control. From 60% to 80% of those with PD will eventually go on to experience dementia symptoms. Many people with PD also have Chronic Constipation and or RBD. The more of these "precursor symptoms" a person has, the more likely dementia is. See our books (below) for more about PD.

Hallucinations. When the Lewy bodies travel a little further into the brain, they find the cerebellum, which has a lot to do with making sense out of what a person sees. Here, Lewy bodies interfere with this process and cause a person to hallucinate, or see (or feel or hear) things that aren't really there. These hallucinations can appear very realistic. Even so, a person can usually understand that although they see the little bugs or green men or lady on the sofa, no one else does--at first. Then as the Lewy bodies move into the thought processing parts of the brain, they begin to believe their hallucinations are real. See our books (below) for more about hallucinations.

Mild Cognitive Impairment (MCI). The Lewy bodies have found the cerebral cortex, the area of the brain where the ability to think clearly and do tasks is stored, causing poor decisions or the fumbling of familiar tasks (MCI-LB). If Alzheimer's is involved, MCI may start with memory loss (MCI-AD). In either case, a person can still function and take care of themselves.

Dementia: MCI becomes "dementia" when it interferes with a person's ability to provide adequate and safe self-care. In the case of AD, symptoms usually have to do with memory about things: words, dates, events and such. With LBD, they have more to do with task memory: the ability to perform once easy tasks. Lewy bodies also mess with one's thinking skills and delusions become common. People with hallucinations now believe they are real.

Now, the thing to remember is that with LBD nothing is firm. Every person experiences LBD differently. Any one of these symptoms can occur without the other, or in almost any order, although at least one of them usually occurs prior to the dementia. Lewy bodies tend to travel in the way I've described, but they often don't. They may skip a symptom, such as PD, and move on to the next, or they may travel in a different order. In fact, about 50% of the time, a person with Lewy body dementia will NOT have experienced PD first, although eventually, they will usually have some motor issues. When this happens, it is called Dementia with Lewy bodies.

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
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.

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.

What's the Difference?

We are often asked "What's the difference between Alzheimer's (AD) and dementia." Or between Lewy body dementia  and Alzheimer's. Or less often, between LBD and Parkinson's. The latest one was between LBD and Multiple System Atrophy. Today's blog is a list of definitions, along with how these conditions relate with each other. It is very basic and for many regular readers, the information in this blog and the next will likely be redundant but sadly, new people are joining the ranks of dementia care partners every day. I hope these blogs will help you sort out what dementia is and isn't.

Cognitive abilities: Skills we use to learn, remember, problem solve and pay attention, control impulses and communicate.

Syndrome: A collection of symptoms that occur together and characterize a condition but the underlying cause is not necessarily known.

Dementia: A syndrome, where there is a decline of at least two cognitive abilities severe enough to interfere with daily life. There are over seventy (70!) underlying causes of dementia. About 95% of these causes are Alzheimer's, Lewy body dementia, vascular dementia, and frontotemporal dementia. These dementias tend to occur together and a person seldom has only one kind. There are other causes, such as brain injury, hydrocephalus, brain cancer or HIV. Most dementias are not reversible but some, such as vitamin deficiencies, thyroid abnormalities and medical interactions, are. This makes obtaining a diagnosis important. Most dementias are progressive, but some are episodic.

Progressive vs. Episodic: Damage from progressive dementias causes a gradual degeneration. Damage from episodic dementias is an individual event and doesn't change. However, many events may occur closely in time to each other, making the dementia to appear to be progressive. An important difference is that episodic dementia can be kept from increasing if the cause is removed.

Most Common Types of Dementia:

Mixed dementia: The percentages for each dementia below add up to much more than 100% because most dementias are mixed. Where one kind dominates, or where a doctor is more familiar with one kind, that's what will be diagnosed. As all dementias progress, most symptoms will eventually be affected and they dementias become very similar.

Alzheimer's Disease (AD): Progressive. Up to 80% of all dementias. It attacks and kills brain cells and the brain actually shrinks in size. Early symptoms are cognitive--mainly memory loss.

Lewy Body Dementia (LBD): Progressive. Progressive. Up to 30%. It attacks certain messenger chemicals called neurotransmitters and weakens or kills them. It is more invasive than AD and has many more symptoms. Early symptoms vary from constipation to hallucinations to mobility issues and more.

Vascular dementia (VaD): Episodic. Up to 30%. Occurs when the brain doesn't get adequate oxygen, usually from a stroke. Many small strokes can cause the dementia to look progressive. Symptoms depend on the area of the brain deprived of oxygen. Lifestyle changes can often prevent further episodes and stop the dementia from progressing.

Frontotemporal dementia (FTD): Progressive. Up to 5%. It affects the frontal temporal of the cortex, where empathy is generated. Memory, and other cognitive skills may remain, but one's ability to see another's view or pain fades.

Next week the blog will be about the differences between LBD and other conditions such as PD and MSA. It will also discuss further the different types of LBD.

* Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
VaD: Vascular dementia
FTD: Frontotemporal dementia
MSA: Multisystem atrophy
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PD: Parkinson's disease
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
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.

Marijuana and LBD, Part 3: Ways to Use it

The last two blogs have been about marijuana (MJ). Wow! I didn't know I'd need three blogs to cover this subject! This one is about the different methods of ingesting the drug. Again, there are a lot more than I'd have thought. Let's start with the most common:

Smoking: Recreational users like smoking because, besides being about the easiest and cheapest way to go, it is the most likely to facilitate its psychoactive properties. Smoking also exposes lungs to many risks. For these two reasons, we can't recommend smoking for the person with LBD.

Vaping: This is a process similar to that used by electronic cigarette smokers. It is much less risky to the lungs than smoking, but just as likely to foster psychoactive properties. (Of course,  a lower THC content predicts less psychoactivity. Thus, vaping MJ with a high CBD/low THC content might be considered. However, other forms of use are still likely better.

Edibles: You can add MJ to your own baking or teas, or you can buy products from cookies to popcorn to sodas with the MJ already added. Edibles do not irritate the lungs and have low psychoactive properties, making them good candidates for use. They can be very attractive to the sweets lover, and easy to use. With edibles, the effects are slow to arrive, although once present, they are long lasting.

Tinctures and sprays: These are alcohol extractions of the cannabis (marijuana) plant. Place a few drops under the tongue, or in a liquid like coffee, or even directly to the skin. (I interviewed a local doctor who advocates marijuana use for a variety of symptoms. He suggests this method as the best for a person with dementia.) These provide the instant relief similar to smoking when used sublingually, with a very low risk of psychoactive effects. Try out a small area first if you apply it directly to the skin, to test for allergies or irritations.

Topical applications: Marijuana dispensaries offer a variety of lotions, salves and creams, used to relieve localized pain and reduce inflammation. As with edibles, there is no risk to the lungs and limited if any psychoactivity. There's also some evidence that these topicals can provide better local relief than smoking. As with tinctures and sprays, test a small area for allergies and irritations first.

Capsules: Usually, the capsule contains CBD oil, which is neither water soluble nor easily metabolized. Therefore, the capsules should also contain turmeric oil, which facilitates metabolization. Hemp CBD oil is legal everywhere, but is a much lower quality than that from the MJ plant. Capsules are convenient if your love one can take pills easily. However, dose sizes are limited. Unlike the tinctures or the edibles, you can't cut the dose from a capsule in half.

Aromatherapy: Cannabis flower oil is high in CBD and can be used in a regular distiller. This method is probably not the best for pain relief, since the effect is mild and of course, it will affect everyone in the room. But it can create a calm, relaxing atmosphere.

This is a very broad overview of the ways to use MJ. Like most drugs and their use, it is really much more complicated and varies greatly with the individual and what you want it to do. Thankfully, the people in marijuana clinics are very helpful. They are especially used to questions from "new users," that is from people who likely never considered using what was, until lately, considered an illegal substance. Do ask lots of questions. You want to feel comfortable with whatever you choose to do and use.

* Acronyms:
MJ: Marijuana
MMJ: Medicinal marijuana
LBD: Lewy body dementia
THC: cannabinoid in marijuana that causes the high
CBD: cannabinoid in marijuana that has antipsychotic properites
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
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.