Fluctuating Cognition: A Setup or a Gift

Donna is fairly new to the LBD journey. Her husband, Albert, was diagnosed with mild Lewy body dementia a year ago. There was an initial disbelief over the diagnosis, but once she and Albert and their two grown daughters accepted that they were on this journey, it wasn’t so bad. In fact, Donna said, “It was really a little easier. Now I understood why Al had such a problem doing things he’d done for years, like putting away his clothes properly.”

But then, as it does with everyone eventually, Lewy got worse. Al began having delusions and accused Donna of stealing his money. When he got physical, Donna became frightened and called his doctor who admitted him to a psychiatric hospital. Not the best choice for someone with LBD, but at least they were apparently aware of Lewy’s drug issues and didn’t try to calm him with antipsychotic drugs.  And Donna was assured that Al, a veteran, was eligible for Long Term Care benefits. She applied immediately.

Two weeks later, Donna was pleased to hear that her application was “one step away from acceptance.” By then, Al’s delusions had stopped and he began campaigning to go home.  Since he seemed to be his old, mild self, the doctor complied after a few days. Donna was ecstatic! “He’s so much better—why, we even uh, did it, last night. That’s not happened for so long it’s a wonder I remembered how!”

And then, Al was delusional again. This time he thought Donna was a nurse in bed with him—but still after his money. This is when Donna showed up at a local support group, devastated. She told the members, “I thought he was well. But now, he’s just as bad as he ever was—No, he’s worse. He didn’t even know me!”

Fluctuating cognition (see our May 25 blog) can be a terrible setup for the new LBD caregiver like Donna. If you believe, like Donna did, that the Lewy rollercoaster isn’t going to go back down, that the “recovery” is going to be permanent, you will be horribly disappointed when your loved one starts acting out again. The more experienced LBD caregiver accepts the gift and enjoys this “time out” with her loved one, making the most of it while it lasts. But she knows it is temporary and although of course, she’s sorry to see this time of awareness end, she isn’t surprised.

The story doesn’t end there. Al went back into the hospital but now Donna was told that he was no longer eligible for VA long term care benefits…he had recovered and didn’t qualify anymore. She’d have to reapply! Again, the people who needed to know—the doctor, the facility, even the VA—weren’t aware of Lewy’s fluctuations.  

October is Lewy Awareness month. It’s almost over for another year, but the need continues. The list of people who need to know is long…family members, doctors, nurses, hospices, VA officials, and many more. We need to extend Lewy Awareness to all year long, not just for one month. And we need to focus on things like cognitive fluctuations as well as the drug problems which, although very serious, are not the only way that our loved ones get short changed or even damaged by lack of knowledge in the medical community. 

Maybe It Isn't Dementia!

People are becoming more concerned about their cognitive health, and that’s good. As our population becomes more elderly, and as we become more exposed to the many toxins of our industrialized communities, dementia is becoming endemic. We should be concerned. However, let’s not over react.  Before you become concerned that you or your loved one has LBD or another non-curable dementia, have it checked out. It could be something as simple as dehydration!

Dehydration. When 80 year old Alice became disoriented, her concerned daughter took her to the doctor, who told Alice she needed to drink more water. With her daughter’s continual encouragement and monitoring, Alice did—and the dementia went away.  Even if dementia is already present, dehydration can make it worse. John’s PDD made him too shaky to handle a cup easily and made swallowing difficult. When these problems were dealt with so that he could get more fluids into his system, his dementia decreased.

 Brain tumors. Some brain tumors can cause dementia symptoms. Often surgery can reverse this. This is why you don’t say, “Oh, well, I’m just getting old and some forgetfulness, etc. is to be expected. If you are feeling like you are having cognitive losses, have it checked out!

Malnutrition. Dr. Rosenthal of Buffalo, NY, reports that 30% of the people who present in his clinic for cognitive impairment show signs of malnourishment.  If the body is so undernourished that it can’t function properly, the brain suffers as well.  A good healthy diet can reverse dementia caused by malnutrition—and slow progressive dementias as well.

Depression. Rob, newly retired from his job of 30 years, felt depressed. His wife, Jody, noticed that his thinking wasn’t as clear and his attention span had greatly decreased. His father had LBD and she was afraid that Rob was developing dementia as well. She convinced him to see his doctor who prescribed therapy to help him over his situational depression. As he began to adapt to his retirement, Rob’s depression lifted and his cognition improved greatly. Jody’s concern was valid. Depression is a major symptom of MCI, especially the type that precedes LBD. However, it is also the greatest cause of curable cognitive impairment.  And so be proactive and find out if this is something that can be treated by life style changes, therapy, drugs or even diet.

Drugs. Anyone dealing with LBD knows how dangerous drugs can be for our loved ones.  However, even if you aren’t at danger for LBD, drugs can decrease things like reaction time, attention and memory. (Think of all those medications with warning not to drive while taking them.)  Remove or change the drugs and the cognition will likely improve.

The bottom line is that when you notice cognitive losses, have them checked out. Don’t just assume it is part of the aging process—or even that you actually are having early symptoms of dementia but there’s nothing you can do to change that.  Some cognitive impairment is reversible. And when it isn’t, when it really is a forerunner of dementia, you can usually slow it down.

LBD: Parkinson's Dark Secret

Dr. Graham Lennox, of Cambridge’s Regent’s College, called dementia “the dark secret of Parkinson’s disease.” Nancy, a surviving LBD spouse, agrees. In 2006, Nancy’s husband, Del, was diagnosed with Parkinson’s with dementia (PDD). “We were shocked,” Nancy said. “We’d been dealing with his Parkinson’s for eight years—attending the support groups, listening to all those lectures—and yet, no one, not even Del’s doctor, had mentioned dementia until that day.” Nancy’s voice caught. “We thought we were coping, but this hit us hard. We weren't prepared.”

There were several reasons for Nancy and Del’s lack of information in 2006. Years later, these reasons still exist:

a)      PDD is a “new” disorder. Dementia was not even recognized as a Parkinson’s symptom until the early 1990s. Until then, it was considered to be two diseases: Parkinson’s and dementia, likely Alzheimer’s. In 1994, “Parkinson’s disease with dementia” was included in the DSM-IV, the basic diagnostic manual for mental disorders, and added to the insurance codes. It takes at least a couple of decades for awareness of a “new” disease to develop.

b)      PD doctors are movement, not dementia, specialists. Neurologists who specialize in treating Parkinson’s focus heavily on movement issues and are less likely to be trained to recognize early signs of PDD. Thus their patients’ dementia may go untreated until it is so severe that it can’t be ignored.

c)      Cross-sectional studies don’t tell the true story. Although dementia has finally become recognized as a symptom of PD, Parkinson’s websites often quote cross-sectional studies, which are a  single “snapshot” of a specified group of people—in this case, people with PD. These usually report a 10% to 30% rate of occurrence, numbers that make the possibility of impending dementia easy to ignore—or deny. Cumulative studies, which are of a group of people over time, show a different picture, with from 65% to 80% of Parkinson’s patients eventually developing dementia.

d)     Parkinson’s disease with dementia is often considered a symptom of late stage PD.  Although the possibility of PDD does increase with age, dementia can occur at any time, sometimes within months of a Parkinson’s diagnosis. Additionally, recent studies have found that mild cognitive impairment (MCI-LB), a major risk for eventual PDD, is often present in PD’s early stages—even at diagnosis.

 “Please spread the word,” Nancy begs. “Don’t leave other families in the dark as we were.” That’s our goal with this blog, our trainings, our book and our bookstore. You can help by telling others about these and about Parkinson’s and its connection to Lewy body dementia.

Who Have YOU Told About LBD?

October is Lewy Body Dementia Awareness Month. It’s up to each of us to make a difference. Each person we tell, each person to whom we explain the seriousness of an incorrect diagnosis, each doctor we educate, each residential care facility we teach, they all count up. They count up in longer lives with more quality of lives for our loved ones because there’s less stress and less misuse of those LBD sensitive drugs. They count up in more cooperation and less frustration because we are finally dealing with people who KNOW.

But there’s still much to do. Just this week, we heard from two women on different sides of the nation. Jill’s husband is in a hospital and the hospital neurologist has decided that his previous diagnosis of LBD is wrong—he is “too functional” to have dementia and so he has some sort of delirium—and needs antipsychotics, of course. Sandra’s husband is also in early stage LBD and in his delusional paranoia, has rescinded her right to participate in his medical treatment. And so when her husband had minor surgery, no one considered his possible sensitivity to inhaled anesthetics. Sandy tried to warn the nurse anesthetist, but was ignored. Now he is nearly unable to walk, and very confused most of the time.

None of these professionals appear to be Lewy savvy.  Doctors who see patients for short periods of time don’t see what caregivers see. It is easy for those who aren’t aware to brush aside caregiver concerns. And sadly, there are many more like them in our hospitals and care facilities—and in our families as well.

Yes, our families. Over and over we hear stories of family members who refuse to consider that their parent, sister, brother, has LBD. Again, that fluctuation cognition gets in the way and they often see only the “Good Times.” Unlike the caregiver, they aren’t living with their loved one hour after hour, day after day. They don’t see the confusion, the acting out. And so often, they aren’t willing to listen to the ones who do know. They don’t want their loved one to have this dread disease—and so he/she doesn’t—as far as they are concerned.  And there’s no support, and much frustration and stress for the caregiver. Stress which is passed on to the loved one, of course, so that what the disbelieving family member means as support actually becomes harmful and leading to even worse symptoms.

How do we change this? First, we need to fund organizations like the LBDA who support research and awareness. Secondly, we need to speak up, often and loudly. When it is our loved one that’s involved, this often means going head to head with non-Lewy savvy medical personnel--and standing our ground. When it is family, we need to do all we can to expose them to information about this disorder. Our book, A Caregiver’s Guide to Lewy Body Dementia, is a good start. But there are many books, with interesting, easy to read stories about LBD out there now. You can find most of them in our website bookstore. Third, we need to talk about dementia in general just as we do about breast cancer or heart problems. It is still a condition that many people are ashamed of, afraid of and therefore, try to deny that it could happen in “my” family, “my” life.