Dealing with Shadowing

One of the behaviors that can be very difficult for a care partner to deal with is shadowing, that is, constantly following, often very closely, and getting very anxious if the care partner goes into a different room, outside, or shuts the door to use the bathroom.

Charlie follows me everywhere. I can't even go to the bathroom by myself anymore. I hate it--it actually makes me feel claustrophobic. I tell him to stop, but he just ignores me. Marion

To deal with shadowing effectively, Marion needs to recognize the cause and address it. Like most BPSD, shadowing is driven by negative emotions: anxiety and fear. Charlie is not trying to irritate or control her. Address the fear, not the behavior! All of the suggestions in last week's blog on defusing negative emotions are applicable.

As Charlie's memory and perceptions become faulty, Marion becomes the one safe and known aspect in Charlie's life...his life raft in a sea of uncertainty. Anything she can do to maintain structure and stability will help. Last week's blog names several of these, such as establishing rituals and routines. In addition a care partner can:

Develop some alternative means of orientation such as identifying notes on furniture and doors.

Install white board for daily updates and messages so that the PlwD will be used to using these when calendars and clocks become useless. Using this can help to maintain orientation: "Today is Wednesday, June 1" or "I'll be at golf until 2pm."

Use distractions such as a favorite snack, a meaningful activity or looking at family photos. When the PlwD is past doing these, she can offer him a squeeze ball or a brightly colored scarf to hold, with a "Please hold this for me, honey."

Play recordings of the PlwD's favorite music or of the care partner speaking reassuring words.

Ramp up verbal reassurance and physical touching. Do this all day long, not just when the PlwD is hovering.

Try using an egg timer for short absences. Set the timer in front of the PlwD, and give them something to hold, like a book or a napkin. Say, "I'm going to the bathroom and I'll be back when the bell rings. Your job is to watch the clock." Don't say anything more--that is confusing! Set the timer and go. Make sure to maintain trust by being back on time! Then, reinforce: "See, I'm here even before I said I'd be back!"
If you still leave the PlwD alone, program a simple cell phone with your number on an easy dial button and give it to them before you leave. This will help the PlwD feel less isolated and deserted. (Even so, expect lots of calls...)

Marion also needs to take care of herself so that she doesn't radiate negative emotions that Charlie will mirror with increased shadowing. As care partner you need to:

Watch your attitude, and work to avoid your own negative feelings. "It's the disease, not my loved one" is a good mantra. So is "It's a symptom, not an intentional irritant."

Give yourself a time out if you begin to feel irritable, even if it is just turning your back or closing your eyes. Take a deep breath, repeat your mantra to yourself and then come back and give the PlwD a hug.

Build free time into your schedule, using the friends/family/daycare routines, the timer, white board and phone. Maintain routine and rituals religiously--for your sake, as well as the PlwD's!

Use some of that free time to attend a support group, and use it to vent and ask for help.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Dealing with BPSD: Hallucinations

Last week's blog was about how to defuse negative emotions. That's an important basis for dealing with most behavioral and psychological symptoms of dementia (BPSDs).

• These emotions often drive the resulting acting-out behaviors such as aggression or withdrawal.
• Without these energy-robbing feelings, the PlwD has more personal reserves for dealing with the dementia symptoms themselves, such as hallucinations.

There are also ways to deal with each symptom as well. Today's symptom is hallucinations.

My dad, Hank, has LBD. Lately, he's been having a lot of hallucinations. Most of them are harmless and manageable--workmen in his house or on his property. But some aren't. How do I convince him that there really isn't a man in his house holding a gun to his head? He thinks I'm nuts when I tell him it isn't real. Someone suggested that I use a spray bottle to get rid of the hallucinations, but that didn't work. Dad just thought it was silly. His doctor suggested Namenda. I plan to research Abilify too. -- Maude

LBD tends to attack a person's thinking skills even before it affects memory. When Hank first started getting hallucinations, he may have known that they weren't real. But as his ability to think abstractly fades, he can no longer tell the difference between hallucinations and reality. They are HIS reality and he is stuck with them.The more Maude tries to convince him of HER reality, the more frustrated, hurt, or angry he will get. (Think about how you'd feel if someone tried to convince you that you didn't really live in your home. Sounds absurd, doesn't it? Insulting, even, for them to even think they could do this. Well, that's how Maude's father feels when she tries to spray away his reality. "How silly and insulting!" he thinks. Maude has tried some things that don't work well.

These is what you can do:

• Ask if the people are bothering your loved one. If they aren't, they are not the one with problem. YOU are. Relax. Let it go. Learn to deal with the hallucinations by accepting them as a part of the disease. (See previous blogs on hallucinations and delusions.)

• Be willing to join the PlwD's reality and "play along" enough to get rid of an annoying or frightening hallucination. (See previous blogs on improv theater.) Do more or less what you would do to get rid of the situation if it were real. For instance, Maude can tell the man to take his gun and leave. Stand at the door and usher him out. Close the door. (Understand that this just takes care of this time. The "man with a gun" can show up again. Even if you took the gun away, her dad wouldn't remember that.)

• Do consider dementia drugs like Aricept, Exelon, Razadyne and Namenda. They address more than just cognition. If your father also has Parkinson's, ask his doctor to review his PD drugs. They can also cause hallucinations. But your accepting attitude will help more than anything.

• Be careful with antipsychotics like Abilify. Research shows that while it is not as dangerous for a PlwD as Haldol, it is more dangerous than Seroquel and about as dangerous as Resperdal, Zyprexa and Geodon. All of these drugs except Haldol are "second generation" antipsychotics often prescribed for BPSDs. All of them should be monitored very carefully to assure that they don't cause more problems than they solve. (reference)

• Do take care of yourself. The PlwD mirrors your feelings. A calm, healthy, happy caregiver means fewer dementia symptoms, including hallucinations. (See previous blogs on dealing with emotions and on caregiver care.)

Future blogs about dealing with BPSD will be on shadowing and being in the moment,

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Defusing Negative Emotions

Last week's blog was on emotions in general. If you haven't read it, or the previous one on thinking, please do so before you continue. Emotions are usually either negative or positive. The stronger negative emotions drive evasive behavior--often acting out behavior. The more subtle positive emotions bring comfort and peace. The goal is to avoid or defusing the negative emotions while encouraging the peaceful ones.

Negative emotions include anxiety, anger, confusion, frustration, fear. As dementia progresses the ability to judge more or less decreases and so a PlwD tends to feel most emotions at their highest level. I'm not just a little frightened; I'm AFRAID. I'm not sort of anxious; I'm FILLED WITH ANXIETY. I'm not irritated; I'm ENRAGED. The longer my feeling lasts, the more intense it gets. These are the feelings that drive the behavioral and psychological symptoms of dementia (BPSD). Therefore, it is in everyone's best interest to avoid triggering these feelings whenever possible, and to defuse them quickly when they do occur.

Negative emotions are usually a response to stress. The problem is that the PlwD may no longer be able to connect cause and effect--this requires abstract thinking. Thus, they may not know why they are acting angry, or frightened. Thus, the care partner's job is to recognize and avoid such stresses whenever possible and to end them as quickly as possible when they do happen.

You can't use reason or time-related solutions. Dementia takes away a person's ability to reason and which requires abstract thinking. It also keeps them in the here and now--they don't understand "later." But there are many things you can do. Start preparing as soon as you have a diagnosis...or sooner! Don't wait until the PlwD's abstract thinking is all gone to start.

• Add structure to the PlwD's life by establishing daily and weekly routines and rituals. Structure promotes positive the feelings of comfort and safety and limits negative feelings of confusion and fear. The sooner in your journey you do this, the easier it will be to do.
• Routines should include events that encourage sociability such as visits from family and friends (one at a time). Start adult daycare before it is needed, so that it can be accepted and even enjoyed.
• Routines should also include meaningful activities, such as folding clothes, doing dishes, working jigsaw puzzles or playing a card game.
• Add simplicity. Remove clutter, unnecessary knickknacks and furniture. Like structure, simplicity replaces confusion and fear with feelings of comfort and safety.
• Develop a play list of the PlwD's favorite music. Music is very calming and thereuptic.
• Learn what things are most likely to cause negative emotions for the PlwD, and avoid these whenever possible. (These will be different with each person. Dave may be afraid of dogs, Mary may get upset when she is rushed, June may do very poorly in crowds.)

In the present:

• Continually use verbal reassurance. "I love you. You are safe. Everything is/will be OK." Compliments and positive messages need to be voiced over and over to be really effective. (It takes 6--or more--positives to counteract a negative.)
• Practice hugging and loving touch. (Custodial touching doesn't count. That is, helping them onto the toilet, into a chair or into bed don't count. The touching needs to be volunteered because you want to, not because you need to. (Remember the 6 to 1 rule.)
• Maintain routine and rituals religiously. Always have friends in on the same day at the same time. Always make folding clothes, or doing dishes, or whatever, the PlwD's job. Always ...
• Make no unnecessary changes of furniture or decor. Replace old clothes with similar ones. Don't offer "new" foods. Variety is no longer fun!
• Recognize acting out as a stress-related response, and look for the trigger, then deal with that, not the behavior.
• Use music as much as you can, starting with that play-list of favorite songs, and going on to others that the PlwD enjoys. Music in the house is soothing and brings about positive emotions.

Finally, take care of yourself. An overextended, sleep-deprived, ill, or unhappy caregiver is a strong stressor for the PlwD. They will mirror your feelings and add their own feelings of inadequacy and fear of desertion. (See other blogs on caregiver care.)

Next week, we start talking about using your knowledge about emotions with specific symptoms.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Emotions Drive Behavior

Last week's blog was about thinking skills. Because we use abstract thinking to evaluate and make decisions about emotions, it is important to know about the different kinds of thinking. If you haven't already read last week's blog, please scroll down and read it now.

This week's blog is about emotions in general. Understanding how they work can help the care partner deal better with the often frustrating behavioral and psychological symptoms of dementia (BPSD).

Emotions drive behavior. This is the case with everyone. We run away or relax, depending on the emotions we have and how we chose to respond to them.

Negative emotions are motivators, and can be quite stressful. These emotions cause the body to secrete those "fight or flight," stress-increasing hormones. They are usually intense, drawing and holding one's attention, and demanding change, and pressing for movement away from the discomfort they cause.

Positive emotions are calming. They cause the body to secrete "feel good," stress-reducing hormones. These emotions are centering, bringing about relaxation and calmness. They are seldom intense; instead their mildness allows a person to stay in a comfortable space.

The ability to feel emotions does not fade. It lasts to the end of life. Apathy can weaken emotions, but they never completely disappear. As the ability to think abstractly fades, emotions take a greater part in a person's decision-making. That is, the PlwD acts on feelings without considering their validity.

It takes about six (6) positive events to counteract one (1) negative event. This is because positive emotions tend to be subtle and negative emotions tend to be intense. Ex: Six complements to counteract one complaint. Because in our culture, we tend to discount positives, it could take even more!

There are drugs that can affect emotions, but they usually have other actions too. Therefore, try non-drug options first. Even if they don't work alone, they will often decrease the amount of drugs needed for the effect you want.

With these principles in mind, a care partner can work to avoid or remove anything that might cause negative feelings while preserving or bringing about anything that might cause positive ones. The more comfortable and relaxed a PlwD is, the fewer BPSD they will have. That's actually the basis for stress management: decrease negative feelings and increase positive feelings.

Of course, it isn't always easy to identify what will elicit the negative feelings. As cognitive ability fades, emotions become more important as they replace reasoning. Normally, a person filters emotions through a variety of thought processes:

An event or thought causes an emotion, followed by an action based on the emotion. Mary, Joe and Dana see a tiger chasing a child on TV.

• Mary, who does not have dementia, has an automatic fear response to the virtual event, but she immediately uses abstract thinking to determine that the tiger is not real and then to makes the decision to reject the fear and relax.
• Joe, a PlwD*, has lost the ability to tell the difference between virtual and real event. He perceives the tiger as real--and becomes very frightened and agitated.
  Helpful hint: An understanding attitude, reassurance that the situation on TV had a happy ending, and lots of TLC is in order. Don't tell the PlwD that is isn't real. That just makes the situation worse. In the future, avoid exciting TV shows.
• Dana, with MCI*, is able to identify the tiger as virtual, but can't get rid of the fear. It was the first piece of information she had about the tiger and she is stuck with it. The fear becomes free-floating agitation, an unpleasant negative feeling that is hard to defuse.
  Helpful hint: This is why even a person with even mild dementia should avoid exciting TV shows.

Interactions are often emotional. Someone says something that feels insulting to Mary and Joe.

• Mary uses her thought processes to determine that she isn't sure about what the person said and so she asks for more information. The new information shows that the comment was meant as a compliment.
• Mary may also decide that her first feeling was accurate, but didn't need action. For instance, the comment was meant to be insulting. She can FEEL insulted without acting on it. She can choose to ignore the feeling and move on.
• Joe hears the insult and is stuck with it. He accepts what he hears literally and reacts automatically. He is unable to evaluate its validity, consider the need for additional information, or choose to ignore the feeling.
  Helpful hint: Distraction can often be a good tool for helping a loved one drop a negative feeling and move on.

Next week, more on emotions.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.