Caregiving, Dementia, Family Caregiving, Lewy Body Dementia

5 Ways Lewy Body Dementia is Different from Alzheimer’s

By Kathy Teyler Jarrett, Oregon LBD Support Group Facilitator

Kathy and Ben

LBD is not ALZ

When I found my husband, Ben, at the back door—a pistol in one hand, phone in the other, describing to the cops the seven robbers who were getting ready to steal everything in our house—I knew we were in trouble. Not because there really were any robbers lurking. Because this was a sign that Ben’s Lewy Body Dementia (LBD) was worsening.

I learned a great deal about the disease when I became Ben’s caregiver. One thing that I discovered quickly is that LBD shares very little in common with Alzheimer’s. Aside from confusion, and problems following directions and completing tasks—Executive Functioning, it’s called—LBD presents a completely different range of symptoms. In fact, LBD has far more differences to Alzheimer’s than similarities.

1. Memory loss is not a common feature

First, memory loss in the early stages in not common. People living with LBD may lose short-term memory later on, but not in the beginning. Extreme memory loss does not characterize the disease in the same way.

2. Hallucinations and delusions are common features

Next, two related mental symptoms often show up early in LBD, but not ALZ:

  • Hallucinations (sensing things that aren’t there; like “robbers”).
  • Delusions (believing things that aren’t true; like that your spouse is cheating on you, or that the CIA is out to get you)

Not everyone with LBD will hallucinate or have delusions, but many will; and early. If it happens in Alzheimer’s at all, it occurs during the latest stages of disease progression.

3. Physical symptoms are present

Third, LBD affects the body as well as the mind. Parkinson’s-disease-like symptoms are common:

  • slight tremor with exertion
  • difficulty walking, with shuffling steps and stooped posture, frequent falls
  • incontinence of urine and bowels
  • quiet speech and difficulty swallowing
  • trouble regulating body temperature and blood pressure
  • …and more.

Not everyone with LBD will get all these physical symptoms, but they are a hallmark of LBD and they differ from ALZ.

Ben, pre-diagnosis

4. Disease progression is unpredictable

Another major difference between the two dementias is how the symptoms of LBD fluctuate over time. We call it the “Lewy Rollercoaster.” Yes, in both dementias people may experience Sundowing, when symptoms worsen in the afternoon and evening. But people living with LBD may be near normal one day and drastically different the next. Or symptoms may plateau for weeks or months, only to plummet rapidly. Alzheimer’s patients often have a steady and predictable decline, in contrast.

5. Medication sensitivity makes treatment challenging

It is also essential to be aware of the sensitivity to medications many people living with LBD experience. Many patients are sensitive to any drugs and many can’t take medications that work perfectly well with other diseases. For instance, Haldol, an antipsychotic often given in ERs, can turn an LBD patient paranoid and hyperactive, catatonic and unresponsive, or even kill them. This makes treatment difficult, to say the least.

But there is much you can do without medications to help. Plenty of books, website and videos can offer good advice. A knowledgeable doctor can help you find the best treatments and care. If you suspect LBD, find a good neurologist or psychiatrist who understands the disease. Several tests for diagnosis include MoCa and DatScan.

There are other differences between the two dementias, but these are among the most noticeable. 

Help is available

For more information about the Lewy Body Dementia support group in Oregon, contact Kathy Teyler Jarret at kteylerjarret@comcast.net.

Lewy Body Dementia Association (LBDA) is a nonprofit organization providing information and assistance to individuals with the disease, caregivers and medical professionals. Call LBDA at 800.539.9767.

The Alzheimer’s Association can help you learn more about Alzheimer’s and other dementias, and help you find local support services. Call our 24/7 Helpline at 800.272.3900.

The Social Security Administration (SSA) has a “compassionate allowance” program in which workers diagnosed with Lewy body dementia can qualify for Social Security disability benefits. Call the SSA at 800.772.1213.

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