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)