Whatcom County woman learns to live with Lewy Body Dementia

"I just saw Chico run across the room." Chico, my mother's black cat, had died in Massachusetts years ago. We were sitting in her apartment at the Leopold and I had just been given undeniable proof that she was hallucinating. It was the final clue to figure out her type of dementia - Lewy Body Dementia.

This progressive dementia has no cure. It inexorably changes the lives of the individual with the disease and the family who cares for them. It's the second-most common cause of dementia. Up to 20 percent of those with dementia in the U.S. - up to 1.5 million cases - have LBD and I had never heard of it.

When I start out talking with people about my mother's dementia, I have to make it clear quickly that this is "not Alzheimer's" or the conversation will head down the wrong track.

Unlike Alzheimer's dementia, after several years with Lewy Body Dementia her short-term memory is good. She knows me and all of her family members and scores well on the memory tests that she is given. On most days she communicates well and still has her wry New York sense of humor and a quick comeback when someone kids her. She is aware of having dementia and can eloquently describe her feelings about her condition.

But there are many things she can't do, important things called "Activities of Daily Living."

I am writing this article to increase awareness of Lewy Body Dementia in our community. This week is the first annual Lewy Body Dementia awareness week, called "A Week to Remember" by the sponsoring organization, the Lewy Body Dementia Association. The three core features of Lewy Body Dementia are:

Cognitive fluctuations involving unpredictable changes in concentration and attention;

Hallucinations, which are seeing or hearing things that are not really present;

Parkinson's disease-like symptoms.

What this means for our family is that my mother's ability to think changes from day to day and sometimes hour to hour. The hallucinations are less frequent now with her medications balanced, but she may talk intently to me when I'm not there or casually mention the animals or small children in the hall that don't exist. She has trouble getting her hands to do what she wants and has balance problems leading to repeated falls. As I learn more about this disease, I recognize additional symptoms from the long list on the Lewy Body Dementia Association's website, lbda.org.

It is important to get an early and accurate diagnosis of Lewy Body Dementia because there are many drugs that can cause adverse reactions or irreversible damage in those with the disease. Antipsychotic medications, in particular, are a concern. Commonly-prescribed and some over-the-counter medications may cause sedation, confusion and a general worsening of Lewy Body Dementia symptoms. These include drugs with "anticholinergic" properties that interfere with the way nerves work.

I'm a caregiver, not a doctor, but in searching the website empr.com I found that diphenhydramine (in Benedryl and Tylenol PM), amitripyline (in Elavil) and cimetidine (in Tagamet) have these properties. My experience is that the effect is quickly noticeable. For example, the dilation eye drop given to my mother during a routine eye exam made it almost impossible for her to get into my car at the end of the appointment.

Like Alzheimer's dementia, a conclusive diagnosis is not currently available without a brain autopsy. However, a family can get a likely diagnosis by consulting with their loved one's primary care physician and specialists in neurology. Diagnosis will probably include physical and neurological examinations, patient and family interviews, and neuropsychological and mental status tests. We went to the Center for Senior Health, a local neuropsychologist and a Seattle neurologist.

If you think that you or someone in your family might have Lewy Body Dementia, you don't have to face this disease alone. The Lewy Body Dementia Association, lbda.org, has a telephone helpline and information for both families and health care professionals. The local Alzheimer's Society of Washington's Annual Conference is Oct. 15 at Christ the King Center at 4173 Meridian St. The Alzheimer's Society is a great place to learn about Alzheimer's and other dementias, alzsociety.org or 360-671-3316. I encourage you to ask for help.