Does Lewy Body Dementia look like Parkinson's?

A fellow caregiver asked...

My husband has been diagnosed with Lewy Body dementia but it appears to look like Parkinson's also? What is the difference? He has had dementia for over four years, and around six months ago a tremor in one hand appeared. The tremor is getting more pronounced -- radically so. He seems to be exhibiting almost every symptom of Parkinson's.

Expert Answer

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

Lewy body disease can indeed look like Parkinson's. The dementia that manifests in Parkinson's is a Lewy body dementia (LBD). In the earlier stages of LBD, the manifestations tend to mimic Alzheimer's disease (AD). It is not rare to be diagnosed with a dual diagnosis of AD and LBD or Parkinson's.

I am not a physician, but 30 years of working with cognitively impaired adults does give me a sense of the major, although not entirely unique, differences between LBD, Parkinson's and Alzheimer's. I believe that getting an early diagnosis, as you have done, greatly helps in planning future care. A sensitivity to neuroleptic medications is rather common with LBD. Hallucinations may often occur and be very real and frightening to the patient. Neuroleptic meds may be prescribed to help alleviate hallucinations so it is helpful to be aware of the possible negative side effects for this group of patients. Your pharmacist can be a great ally during this phase of the disease.

Other symptoms of LBD, which separate it from the other illnesses, such as Alzheimer's, include but are not limited to: (1) a dementia that appears to fluctuate leaving the patient seemingly able to function at a better cognitive level during parts of the day or week and at a much more confused level at other times; (2)seeing things that are in fact not there (hallucinations) and truly believing that these aberrations exist. Trying to diffuse the visions by rationalizing or reasoning with the patient only leads to anger and frustration; and (3) the judicious use of non-neuroleptic meds may be needed to control this behavior; and motor symptoms beginning with barely noticeable shaking which progresses to full tremors as the disease progresses.

My suggestions for the most positive caregiving would be:

  • Befriend your pharmacist and have him help monitor medications that will not cause new caregiving or patient issues.
  • If you are not already exercising daily with your husband, I recommend beginning now! Physical exercise will help his body tone and his sense of well-being and if you can exercise with him it serves a double purpose. A physical Therapist can come to your home to help with exercising as the disease progresses. This service is usually covered by a third party payment
  • A heart-healthy diet seems to have positive effects on brain health. Offering healthy meal and snack choices may assist in keeping cognition a bit longer.
  • A great website for information on LBD is lewybodydementia.org. It offers an overview of the disease and answers many caregiver questions.
  • This online site, caring.com, also offers solid information and support.

Please take care of yourself. Healthy caregivers can more easily become the most positive carepartners.