One of the problems when a family member has a "probable diagnosis of Lewy Body Dementia" is the uncertainty. The diagnosis can only be confirmed by an autopsy of the brain after death.
Meanwhile, decisions about care and medications have to be made, as well as long-term financial planning.
Today my sister and I took our mother to a neuropsychologist for her annual or semi-annual check up.
She did very well. On the Mini-Mental, she scored 19, the same as a year ago. On the memory tests, showing her a list of ten words and askng her to recall them five minutes later, she did better than she had last July. Her scores last time were 2, 5, and 2 out of ten, but today they were 3, 5, and 5. After twenty minutes, she recalled one out of ten words last July but four out of ten today.
"It's a wonder!" the doctor and Emily and I said.
On the test of visual/spatial skills, planning, and organization, she did not do as well. For example, she had difficulty when asked to draw the face of a clock. In fact, she pulled up her sleeve to copy her watch until told that doing so would be cheating.
When mentioning one of her granddaughters, she used the name "Stephanie" instead of the correct name, Meridith.
"So is it really Lewy Body?" I asked the doctor. "If she's doing so well and not really declining, maybe she just has dementia caused by TIAs or by her ambulance accident--being in a coma--in 1945. And if she doesn't have an illness with a 5-7 year life expectancy after diagnosis, we need to plan financially. We've been hiring 'round-the-clock caregivers in addition to Ocean View Assisted Living, but if she is going to live ten more years, we need to cut back."
At this point Dr. Claudia Kawas, a neuropsychologist at the University of California, Irvine, explained the tentative nature of all expectations with Lewy Body patients.
"The life expectancy of someone 87 years old is four years," she began. "Dementias shorten the life expectancy in younger people, but there's a wide range of life expectancy in dementias. If you get a dementia when you are older, it doesn't progress as fast as in a younger person."
"So the 5-7 year life expectancy for Lewy Body is really longer in older people?" I asked.
"Yes," she said. "Those figures are just a mean for LBD patients of all ages. And people in their nineties and one hundreds are the fastest growing segment of the population."
"Interesting," I said. "If you didn't get cancer or some other disease earlier in life, you can do pretty well in your nineties."
"Alzheimer's Disease was discovered one hundred years ago," she continued. "I have a paper coming out soon in a centennial commemorative journal. But when Alois Alzheimer first identified these symptoms as a disease, he was describing a patient who was 49 years old. It was believed to be an illness occurring in people 49 to 53 years old. Then it was observed in people in their sixties, seventies, and eighties.
"I'm conducting a study of 1,151 people in the nineties and older age group. Some of them are normal in their behavior, some have Alzheimer's, and some are diagnosed with other kinds of dementia. So far 35 of this group have died, and we have examined their brains.
"In studying the 13 brains of people who had been diagnosed with Alzheimer's or some other form of dementia, we found that 50% had no physical differences in their brain that would explain the dementia. Yet their median score on the Mini Mental test was zero. In the group with no dementia, the median score was 17.
"You mean these people who had been diagnosed as having Alzheimer's or Lewy Body or something else actually did not have these diseases? Their brains looked okay?"
"Yes," she said. "We looked for other differences between the groups to try to explain the difference in scores. The only big difference we could find was self-reported TIAs. So vascular events that don't show up in brain autopsies could be a main cause of dementia.
"In comparing the living subjects, we found another major difference: oxygen levels in the blood. Those with good levels of oxygen do well on the mental tests; those with low oxygen levels do worse."
I asked Dr. Kawas where I could read about her research, and she directed me to reports coming out in the Journal of Menopause and in the American Journal of Longevity.
Then we went back to the specifics of how to manage Mom's illness, whether it turns out to be Lewy Body or caused by TIAs or by some other unknown factor.
Emily and I explained that Mom's main problem right now is vivid dreams or hallucinations at night that cause agitation. She also has extremely sleepy days once or twice a week and agitated days once a month or so. Most of her days are normal with only brief periods of agitation or sleepiness.
"She's doing great," we reported. "All her medications and vitamins seem to be just right. She's been at an equilibrium for several months."
"Excellent," responded Dr. Kawas. "We won't try to medicate her out of the sleepiness or agitation unless we have to. So she's been happy, not depressed? Is she on any anti-depressants?"
"She was on Celexa, but that was discontinued last June when she had her allergic reaction," Emily and I said. "Now she's on Remeron (mirtazapine)."
"We could also consider the older, tricyclic antidepressants,"Dr. Kawas said. "Because they suppress dreams to some extent, which would help with her hallucinations. I see that she had Ativan briefly in May, 2004, and didn't do well with it."
"It was terrible," we said. "She was so sound asleep she could hardly sit up."
"That outcome would be expected with Lewy Body," said Dr. Kawas. "We also won't use any of the antipsychotics if we can help it."
Mom held up pretty well during this two hours plus series of tests and conversations. She panicked at one point and demanded an immediate trip to the restroom, where I changed her Depend, but she did not otherwise use the toilet.
At another point a young intern being trained by Dr. Kawas encouraged Mom to play Bingo at her residence and participate in exercises such as ball tossing.
"Wearing high heels like that and talking like that to me!" Mom fumed after Dr. Rublesky left the room. Mom was wearing sensible shoes but still misses her high heels.
"You are a vision in pink," Dr. Kawas smiled, enjoying the spectacle of this patient, fiery and opinionated in her pearls, earrings, bracelet, and hairdo, with an elegant rose-and-black-patterned rayon blouse and skirt topped by a pink tailored jacket.
After the appointment we left, pushing Mom in her wheelchair, impressed by Dr. Kawas's kindness to Mom and to us.
"She's so popular," said Emily. "The doctors and caregivers all love her."
"Amazing," I answered.
We drove back to Santa Irena, but only after stopping for her reward: one scoop of butter pecan ice cream in a plain cone at Baskin-Robbins.