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. 

Mild Cognitive Impairment - Lewy Body (MCI-LB)

Until recently, a person had to be experiencing some sort of memory loss to be diagnosed with Mild Cognitive Impairment (MCI). However, in the last few years a new type of MCI has been identified—one that LBD families were quite familiar with. In MCI-LB, the basic definition remains the same: cognitive losses not severe enough to significantly interfere with functional ability or activities of daily living. However, the cognitive losses are “non-amnestic,” that is, they involve cognitive functions other than memory.

Dementia usually starts as mild cognitive impairment and increases very slowly. MCI-LB can occur by itself, or with other non-cognitive symptoms that also warn of eventual LBD.  Very little is known of how MCI precedes DLB, but much is being learned about how it occurs with PD. Here are some statistics:

• Mild cognitive impairment occurs in about 25% of newly diagnosed PD patient.
• The risk for dementia increases when MCI is present at or near PD diagnosis.
• The risk for dementia increases even more when other risk factors are also present at or near a PD diagnosis.

A person may have only one of the following symptoms (single domain) or several (multiple domain) or even all of them. However, to be defined as MCI, there must be some loss of executive function or memory. The John Hopkins Health Alerts listed these symptoms for non-amnestic MCI:

•    Executive function. These include difficulties with problem-solving, initiating and planning, multitasking, impulse control, following through and monitoring performance.

•    Memory. Memory retrieval may become difficult. This may include tasks learned long ago—playing the piano, using electrical equipment, driving or even brushing one’s teeth. Learning new information is still possible with adequate repetition.

•    Mental processing. Mental processes slow down the ability to process and respond to information. This has a domino effect that can impair other cognitive abilities, including problem-solving and memory retrieval.

•    Language. Finding the proper word to use becomes difficult (it’s on the tip of my tongue syndrome). 

•   Multitasking. Understanding and processing complex information becomes difficult. Being presented with more than one idea or choice at a time or needing to perform sequential tasks may become frustrating and stressful.

•    Attention. Maintaining focus or doing more than one thing at a time becomes difficult.

•    Visual-spatial abilities. Perceiving, processing and acting on visual information becomes difficult. This impairs driving, reaching or walking.

We are well aware that the most bothersome symptoms of MCI-LB are usually non-cognitive—things like hallucinations and even delusions. We plan to discuss them in a later blog.

Embracing Lewy

When my son, Ken, was in grade school, he came home one day with a dog—a big hairy thing with little to recommend her as a pet. Ken said she followed him and even when he told her to get lost, she just slinked along after him. “Can we keep her, Mom?” Foolishly, I said yes. Ken named her Cleo.

Cleo peed on the carpet and chewed up the sofa and stole food off the table.  She spread hair throughout the house and wouldn’t come when we called her. Sometimes I wanted to beat her, but I’d seen beaten dogs—they could be ferocious, giving back what they’d learned. And so instead, we used affection and continuity. Cleo was never the well-mannered lap dog I’d have preferred, but as we accepted her as a member of our family, she did become bearable and even at times, enjoyable.

Lewy is a lot like Cleo. It comes uninvited and refuses to leave. If you try to ignore it, it acts out and makes your lives miserable. If you fight Lewy and try to beat it into submission, it can become ferocious. But if you accept that it has come to stay and treat it gently, even embrace it with love, Lewy will cause you much less grief. 

There were things that would set Cleo off—like car horns. When one honked, she’d go berserk, barking and racing around and around long after the honking had stopped. I learned that I could calm Cleo down by giving her something she liked. I could give her a bone and she’d forget the horn and chew happily on her bone for hours.

Stress sets Lewy off too—almost any kind, from environmental to pain to the frustrations of the disease itself. And like Cleo, Lewy likes certain things too: Calmness, security, continuity, loving touches, simplicity. Make these happen, and Lewy will act out less and be easier to live with.  

Residential Placement--Without Guilt

Twin issues make it likely that eventually most LBD caregivers will need to consider placing their loved one in a residential facility. First, LBD is a progressive disease. No matter how dedicated you work to reduce stress and do other things to keep the symptoms mild and the acting-out minimal, it WILL get worse, with acting-out being the norm rather than not. Mobility may decrease as well. 

The second issue is your own health. Statistically, dementia caregivers are at high risk for illness and other health issues such as bad backs. LBD caregivers are at even higher risk. Either of these or, often, the two together can make the need for residential care a reality. Here are some areas of concern:

1.      Promises. The ideal way to prepare for this eventually is to start the planning early in your LBD journey while your loved one can still participate. But even if you don’t do that, be careful not to make promises you can’t keep. In our book, we talk about how Jim promised Annie he’d keep her at home. When he couldn’t keep his promise, Annie never forgave him. With AD, she might not have remembered the promise, or even Jim. But Annie had LBD, and she did remember. And so if you do make such promises, be sure to ALWAYS add, “as long as it is safe.”

2.       Stimuli. When looking for the ideal home, remember that your loved one is extremely sensitive to almost any kind of stimuli—too many people, bright lights, too much activity, etc.  Joy Walker, in her book, Three Years and Thirteen Dumpsters, tells of how she thought she’d chosen a wonderful place with caring staff for her father. But it was too big—too many people were coming and going, too much was happening and it overwhelmed her father and caused him to act out. When she moved him to a smaller home, with only a few residents, he did much better.

3.      Location. The closer the place is to your home, the more you will be able to have quality time with your loved one. You will be able to be there for shorter periods at all times of the day instead of just staying there for hours even if he is asleep and missing other times when he is awake. Also the more you will be able to take care of your own needs. For instance, you will be able to slip home for a couple of hours for a reviving nap, or take those hours to go out to lunch with friends.

4.      Drugs. Know the facility’s policy about drugs. You want to know that those drugs that are unsafe for your loved one will not be used and that the staff is trained in ways to use environment, behavior management and stress reduction to decrease symptoms before resorting to drugs.

5.      Interviews. Make visits, maybe even take your loved one there for a meal. Tour the facility. Interview staff. Our book includes things to look for and questions to ask. You can also find many other question lists on the internet at sites like Cargiver.org.

6.      Guilt. Many caregivers feel guilty when they can no longer care for their loved one at home. Don’t. Let the guilt go and move on. You are still the most important person in your loved one’s life. It’s just that your job description is changing. You may no longer provide physical care, but you are still your loved one’s emotional support and main source of stability. Besides, your guilt becomes stress for your loved one, like any other negative feeling they pick up and internalize.

By the way, expect to discover that after a few months, you will feel that you are an even better caregiver for your loved one. Now you have the energy to give quality time. Now, your health is better and you can focus on more than just making it through one more day. Now you can enjoy your loved one, and he you. Nancy put it this way, “When Del was at home, I was the caregiver and he was my patient. That’s all we had the energy for. Now, with Del in a facility, I got my marriage back. Someone else does the hard, time-consuming physical stuff and I can go back to being a wife, where being supportive and loving is my major focus.

The Therapeutic Lie

“I’ve never lied to my husband and I don’t want to start now,” Marie said. “But when I tell him that what he sees isn’t really there, he gets agitated.

Joan said, “Harry gets really upset when he sees a lot of animals in our living room. I just open the door, shoo them all out and then tell him, ‘OK, they’re all gone now.’”

“When I’m on the phone to anyone male,” Janet said, “my husband accuses me of making plans to meet later and cheat on him. I’ve gotten so I just tell him it was my son.”

Harold added, “My wife resists going to the doctor and so I tell her we are going out for an ice-cream treat. On the way, I stop at the doctor’s, “just for a minute, to pick something up.” She doesn’t like being left alone in the car and so it’s easy to get her into the doctor’s office. They know what’s going on and so the nurse hustles us right into an exam room and the doctor shows up as soon as he can, saying, “While you were here, I just thought I’d come visit with you for a few minutes.” It works like a charm!”

Like it or not, learning to tell a therapeutic lie is part of being an LBD caregiver.  There are times when telling the truth would only make things worse. Sometimes you just need to avoid the truth, or shade it a little.  That’s what Joan did. She didn’t say, “Yes, there are animals in our living room,” but in an implied lie, she joined in Harry’s reality enough to get rid of his hallucinatory animals.  Janet actually did lie about her phone call because she knew that telling the truth would have fed into his delusions and increased his agitation.

Elvish (link) divides these therapeutic lies up into “going along with a mis-perception, withholding the truth, little white likes, and use of tricks.” Caregivers learn to use them all and most will say that it is definitely in their loved one’s best interest—to keep them from being stressed; to get them the care they need; to just plain keep peace. And no small part of the reason is to keep the caregiver from being stressed out as well. After all, when the caregiver is stressed, so is their patient.

The Family Caregiver Alliance put it this way: When someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office?

Allnursses.com recommends that one use therapeutic lying when “the truth would incite mental anguish, anxiety, agitation, and confusion.”

Even people with mild dementia agree that if a person is far enough along the dementia path that they can’t tell that you are lying, and that if it is for the person’s own good, then a lie is acceptable.(PubMed)