Living with Lewy Body Dementia: Q & A with Barry Kauffman on living his life fully
Michigan resident Barry Kaufman, 82, has been living with Lewy body dementia (LBD) for 12 years. He spoke with Alzheimer’s TODAY about the life he has made for himself since his diagnosis.
What is Lewy Body Dementia?
Lewy body Dementia is one of the most common types of dementia in older adults, causing problems with thinking ability that seem similar to Alzheimer’s disease. Later, it has other symptoms, such as movement symptoms, visual hallucinations, and certain sleep disorders. It causes more trouble with mental activities than memory.
You were diagnosed with LBD 12 years ago, well past the average timespan of five to eight years. How have you beaten that timespan?
I beat the timespan because my daughter, Jacqueline, and wife, Annette, noticed my erratic behavior. I wasn’t driving properly. I might miss an exit. My daughter, who is an associate professor of neuropsychology at the University of Michigan, arranged for me to get in touch with a neurologist there. Initially the diagnosis was Parkinsonism. They tested me for six months. I was diagnosed early. I got into testing programs to see my progress and into treatment programs that provided appropriate medication and lifestyle counseling.
How old were you? Were you still working at Blue Cross/Blue Shield?
70. I was happily retired from the best job I ever had. I was an administrative support person.
How did your life change?
It was progressive. There’s the bike I used to ride, the golf game I used to play. I made changes. I had no ill feelings about it. I take a realistic approach about what I experience now and for the future.
What lifestyle modifications have you made?
Two times a week I go to the Y to exercise. I use a walker. I listen to classical music and modern jazz. It has a relaxing effect.
What are your biggest challenges?
The biggest challenge is with people when they learn I have Lewy body dementia. What do they think dementia is? That I can’t do anything? My short-term memory kind of slips on me, but my long-term memory is OK. I want them to understand that not all people with dementia are lost souls.
“I want them to understand that not all people with dementia are lost souls.”
What is my dementia? I walk with a walker. I have a brace on my leg. I can’t even read my own writing. My balance is a problem. I have hallucinations. That’s my dementia. People don’t realize Lewy body, Alzheimer’s and Parkinson’s are called diseases and the effect of the disease is dementia. I read a lot. Now I’m reading Name Change by Kirsten Fermaglich. (Full name: A Rosenberg by Any Other Name: A History of Jewish Name Changing in America.)
I’ve heard you describe your executive functions as being like a roller coaster, up and down. Would you please elaborate?
Right now, I’m pretty much at the top of the roller coaster. I’m cognitive. My activity level can be high and the next day I can’t tie my shoe. When I’m down, I have levels of confusion. Did I take my pills? Feeling down for me is not that often, thank God
What have you learned from living with a dementia-related illness?
I learned I have a disease and it is fatal. I’ve accepted that fact. It doesn’t bother me at all. I have a life. I’m going to live my life. I learned to be positive, active, and proactive. I learned to socialize with people.
What advice can you give to anyone living with LBD or another form of dementia?
I belong to a couple of support groups. One is the Brotherhood of Dementia Minds. (This is one of the groups available through the National Council of Dementia Minds, dementiaminds.org.) When people come in with cognitive issues, I tell them, “You’ve got a life to live.”
Are there any rewards?
There are a lot of rewards, like now I’ve been invited to sit on the steering committee of the National Council of Dementia Minds. There’s all those Ph.D.s and then there’s me.
What do you wish people knew about how to interact with a person with Lewy body dementia or similar illnesses?
Treat me like a person. If people are diagnosed with a disease having dementia attached to it, don’t look at these things. Look at the individual.
You are participating in a research study. Why? Many people are unwilling.
They’re afraid it might hurt or they’re afraid of what might be found out. I’ll do anything I can to possibly find a cause or cure for cognitive issues. I’ve had a CT scan, an MRI, three spinal punctures and blood drawn. I’ve gone through a lot of studies and been tested to see my cognitive levels. An important part of dealing with what I have is getting to contribute to research.
What advice would you give to caregivers?
One of the biggest things we talk about in Dementia Minds is our caregivers. I make sure my wife gets out of the house. My companion comes once a week for four hours. We usually go to lunch, play Scrabble and have discussions. Annette gets lost for four hours. The caregiver needs a life, too.
What are your hopes for the future?
My hopes for the future are simple. I enjoy my reading, my exercising. I have my friends and we go out to dinner. I feel I have a positive attitude and hopefully will continue to. I know I’ll have some down days, but I’ll come out of them.
People with these issues shouldn’t hide them. Other people will be suspicious. Let it out. I’m very fortunate with my whole family. They can poke fun at me, and they do. A lot of it is attitude and a lot of it is support from friends and family.
