An eye-opening new documentary about the life and mind of the great comedian and actor Robin Williams aired Monday night revealing Williams suffered from Lewy Body Dementia (LBD) – a progressive brain disease affecting more than a million Americans.  

The first I’d ever heard of Lewy Body Dementia was when I saw a promotional ad for the documentary and decided to find out more about this disease that ravages its victim’s mind and body.

Statistics indicate hundreds of families bear the burden of this disease while relying on dementia experts and caregivers who struggle daily to keep their suffering family members and loved ones safe.

Caregivers from Visiting Angels, the nation’s largest in-home company with local caregivers, is one such group providing local dementia caregivers who daily go into the homes of patients to keep them mentally and physically active despite their debilitating disease.

These experts are able to offer the following DOs and DON’Ts of communicating with dementia patients demonstrating how to talk, walk, act with these patients, so you don’t freak them out.

Their suggestions are as follows:

• 1. DON’T ask open-ended questions such as “Do you want a glass of water?” 

DO ask “Would you like coffee or water?”    

WHY? Offer concrete choices to get concrete responses.

• 2. DON’T wait on LBD patients hand and foot without making them get up and move.  They will not try unless you ask.     

DO say “Let’s go to the kitchen and try to pick out something to eat” and point to food in the refrigerator.  If patients can’t walk, bring them pictures of food, so they can point to their choice and interact.  WHY? They may not be able to able to handle the mental juggling of making multiple decisions at once. You want to offer simple, step-by-step choices.

• 3. DON’T surprise someone with LBD from behind, they might see you as a threat, and it could scare them. 

DO walk past the patient, so they can see you, then turn around and engage with them for a less confrontational greeting.

WHY?  Patients with dementia have tunnel vision and can often only see in front of them.

Expert tip: Make a telescope out of a piece of paper and put it to your eye to understand the limited scope of their vision.  

• 4. DON’T speak loudly in the face of a dementia patient.  

DO speak in a clear, normal, warm tone of voice to start. 

WHY?  Dementia does not equate to deafness. The patient must take time to digest what you are saying, often they do not understand every word, and they have trouble finding the right words or putting feelings into words.

• 5. DON’T talk down to elderly patients with dementia or treat them like children.    

DO call them by their name. This helps them maintain self-confidence and concentration. 

WHY? A study on what’s dubbed as “elder speak” (simplistic vocabulary or grammar) explains it best.  When communicating with dementia patients, using slowed speech or words like “honey,” “love” or “sweetheart” can be patronizing to them.  Given their state, these words can eat away at what self-dignity they have left.  “Elder speak” can trigger a breakdown in communication and even upset the patient.     

Dementia caregivers help with medication reminders, dressing, transportation, meal prep and other tasks, so the dementia patient can live comfortably with dignity in their own homes. 

As more and more people talk about the Robin Williams documentary and the horrible disease he battled until his death, the public will learn more about what it’s like to live with dementia.

Lewy Body Dementia is associated with abnormal protein deposits in the brain. The deposits lead to problems with thinking, mood, memory, behavior and movement. The early symptoms of LBD are difficulty walking, a decrease in balance and ability to control physical movements. These symptoms are similar to Parkinson’s disease. Frequent falling is also common early in LBD.

In addition to dementia, symptoms include problems with depth perception, difficulty walking, visual hallucinations, paranoia, tremors, fainting spells and constipation.  

An estimated 1.3 million people in the United States are living with LBD. 

The disease typically begins at age 50 or older and lasts an average of five to eight years until death.  

LBD is the second most common type of dementia behind Alzheimer’s Disease.   

Memory can vary significantly day to day with LBD, while memory gradually declines with Alzheimer’s. 

There is no cure for LBD.

Paula I. Bryant is the editor of The Gazette-Virginian. Contact her at pbryant@gazettevirginian.com.​

Paula I. Bryant is the editor of The Gazette-Virginian. Contact her at pbryant@gazettevirginian.com.