Magic Tools 3: Empathy

Last week, we started a series of blogs about the magic of using the right tools with LBD. If you haven’t read last week’s blog, do go back and read it. It lists some of the most important ways that dementia changes your loved one’s brain. Doing your homework and learning about these changes is a requirement if you are going to use these tools well. Last week’s blog also emphasized that the way you respond can make magic changes in your loved one’s reactions. At first, your response likely isn’t going to be automatic. It needs to be a carefully thought out choice, a conscious choice based on what you’ve learned about the dementia-damaged brain.

This week, we take the next step and talk about how important emotions are. Once dementia sets in, emotions rule. Last week, you learned that your loved one must accept the first information they receive about a situation as their TRUTH. That first information always has an accompanying emotion, and since the brain doesn’t like the unknown, it makes up a story to justify the emotion. This is a normal process—we all do it.

• Something happens. You see a dog or hear someone talking on the phone or….
• This information travels to the brain and picks up an emotion along the way. Since negative emotions like fear, worry, frustration or anger are the strongest and most urgent, the chances are that it will be one of these.
• The brain doesn’t tolerate uncertainty, and so it automatically adds a reason for the emotion.
• These strong and urgent emotions function as a natural alarm, a call to action that blares until the “reason” is addressed.
• Then the brain uses complex thinking to evaluate the situation: Is the need for action real or false? If it is real, is it mild or severe? Should I act on it now or can I postpone action until later?

Up to the last step, that’s what we all do. Last week we introduced Frank, who is living with LBD. He can no longer take that last step. His brain doesn't have the ability to evaluate or decide on an action. Instead:

• He must accept the emotional alarm and the reason for it as real and urgent—his TRUTH.
• He will continue to feel the negative emotions until he believes that they have been physically addressed. (A mental solution will no longer work… “it was already taken care of” or “I’ll do it later” or even “that’s Jane’s job” just doesn’t compute.)
• Stuck with this blaring negative emotion that demands action, Frank does his best to address it with behavior that is likely extreme and appears irrational.

Empathy is an essential dementia care partnering tool. That underlying negative emotion driving your loved one’s behavior MUST be addressed. Nothing else will work.

• Ask yourself what you would feel if you believed as he does? Allow yourself to feel that.
• And then, go deeper. What else might you feel in his place? For example, yes, you would feel angry if your believed that your spouse was unfaithful. But what else would you feel?
• There is usually an underlying emotion causing the anger. For example, belief in a spouse’s infidelity is often based on a fear of abandonment.
• Speak to that emotion, not the words or the actions. This is what you must name and share and deflect. (More about this next week)

The Magic of Self-Awareness. Self-awareness is another tool that focuses on emotion. Although Frank can’t empathize, he is super-sensitive to the emotions of others, and especially his wife, Mary's emotions. He doesn’t see them as hers however. Anything he feels, he owns.

And so if Mary shows up feeling angry at their neighbor, Frank feels her emotion, identifies it correctly as anger and correctly relates it to Mary.

But then, he owns it. That is, Frank’s brain:

• picks up Mary’s anger as his and, as always,
• adds a “reason” based on a residual feelings like fear or loss. 

Thus, Frank experiences Mary’s anger at the neighbor as his anger AT HER for something hurtful that he now believes she did to him.

You can avoid passing your negative feelings on to your loved one by being more aware of your own emotions.

• Routinely check your emotional attitude before you interact with your loved one—or even before you enter a room where your loved one is.
• What are you feeling? If it is something negative, take a moment to consciously choose something else to focus on.
• The something else doesn’t have to be super positive, just not negative. (YOU can do this. It isn’t easy, but with practice it gets easier.)
• When you just can’t stop feeling negative (and no one can all the time!), take feelings into the bathroom or at least, out of the room until you CAN feel more positive.

The next blogs will address other “magical” dementia care partnering tools, including acceptance, apologies and distractions.

For more 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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

When Nothing Seems to Work, Part 2

Last week started a series on dealing with difficult behaviors. That blog noted that the first line of defense has to be the care partner's own self care. Only then can you expect to a) respond appropriately to your loved ones unwanted behaviors and b) avoid having your loved one react to your underlying and stressful feelings instead of what you are doing and saying overtly.

This week's blog is about how while dementia changes many things for both the person living with the disease and their care partner, not everything changes--or it only partly changes.

A person living with LBD (PlwLBD) is usually just a more difficult version of the person they were before. Likewise, the relationship you had with your loved one will likely be similar to what you had before, only there will probably be more negatives and these will be more extreme. That's because the dementia-riddled brain:

• is one track, going first with the most demanding emotions, which will usually be negative.
• processes in an all or nothing mode, so that any negativity at all will likely be exhibited as extreme.

We know a young couple who have a very stormy relationship. It cycles from angry arguments to passionate make-ups and back again. This works for them--now. Both of them would tell you that they are married to the love of their lives. "It keeps our relationship interesting and fresh," they say. Even so, I dread to think how that couple would fare if Lewy entered their lives!

Another couple we know are just as committed to their spouses. However, their relationship is much less bumpy and exciting. "We enjoy each other. We have our differences but we can usually talk it out," they say. This couple would probably be able to deal with Lewy much better.

Sadly, dementia multiplies the negatives in a relationship and often ignores the positives. It's the way the brain works. Negatives are given crisis status and therefore are the first to be noticed. That's fine as long as a person can think abstractly. Then, we can look past the negatives to the positives and see that they outweigh the bad. "A person with the ability to think abstractly might say, "I don't like the way my life has changed, but I still have many things to enjoy." The dementia-damaged brain can't do that. It stops with the first information it receives -- "I don't like the way my life has changed."

Even with help, the PlwLBD isn't going to be budged. This is their truth, their reality. Loving, patient explanations aren't going to change that. Angry, frustrated responses will only fix it firmer in place. All your efforts will do is cause your loved one to believe that you don't care and aren't even trying to see it their way--the only way.

Successful dementia care requires huge amounts of empathy in care partners. With it you can enter into a PlwLBD's reality and have a chance of useful communication. On the other hand, dementia takes away the PlwLBD's ability to empathize and so this isn't a two-way street. Don't expect a PlwLBD to understand your frustration, your fears, your worries or your hurt feelings. Instead, they will pick up the emotions you broadcast and mirror them back at you as their own anger and frustration--with no recognition of your feelings and no need to help you feel better.

Back to the couples mentioned earlier, the first couple dealt with their differences by fighting about them, with very little empathy for each other. The second couple made an effort to empathize and come to a mutually acceptable solution. If Lewy hits, empathy is going to go a lot sooner for the first couple than it will for the second couple. Again, what we were is what we get with Lewy, only worse!

The moral of this blog might be "Work to have positive, empathetic relationships while you are healthy because that becomes even more important--and more difficult--when illness hits! Of course, most of those who read this will be beyond the ability to prepare...you are already in the midst of dealing with the damage dementia causes! But all is not lost. Although the PlwLBD is beyond change, the dementia care partner still can. You can focus on being positive instead of broadcasting those volatile negative emotions. You can be empathetic and thus able to respond to your loved one's reality rather than your own.

Or you can if you've taken the first step and are making these efforts with a rested mind and body! But even then, nothing works all the time. It may not be because you "didn't do it right" but just because Lewy is being perverse and difficult. You just have step away, and then try something else...ask for help, ask for ideas.

New week, more about dealing the difficult behaviors and staying sane.

For more 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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

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.

Empathy and Dementia

This week's blog is an excerpt from our upcoming book about dealing with BPSD.*

empathy: An awareness of other people’s emotions, a key element in the link between one’s self and others.

empathy deficit: inability to feel empathy, which can appear as indifference or selfishness.

Empathy is what a person uses to try to understand another's feelings. As thinking fades, emotional sensitivity increases and the PlwD* becomes more aware of other's feelings. However, this doesn't mean they are more understanding. Emotional sensitivity and empathy are very different.

I had an argument with my daughter before I went to visit Joe in the nursing home. He picked up the anger I was still feeling and started accusing me of running around on him, calling me awful names and telling me to leave. -- Lisa

Once Joe identified the feeling he picked up from Lisa as anger, it became his own. His damaged brain found a residual fear of desertion that provided a reason for his anger. (Without the ability to comprehend "might" or "later", what he fears might happen in the future, HAS happened NOW in his mind.)

Empathy is a two-step process:

• Affective empathy, a person feels another person's emotions as though they were their own. You experience this when you see a friend's painful toe and your perfectly healthy toe twinges in sympathetic pain.
• Cognitive empathy, where a person uses abstract thinking to identifying those feelings as the other person's, and not their own. "She feels sad. I'd feel that way in her situation too."

Joe did affective empathy just fine. He picked up Lisa's anger and felt it. The problem was that he couldn't take the next step and identify it as hers, not his. Dementia makes everything personal.

I started crying and asking why he was trying to hurt me. He just yelled more and said, I was the one who was hurting him. I'm devastated. Joe was always such a gentle man and I used to be able to talk with him about anything and he'd understand and help me work through it. I miss that so! -- Lisa

Once a man of great empathy and wisdom, Joe is now unable to provide either. With only concrete thinking, Joe could no more put himself in Lisa's place and understand her pain than he could understand that his anger was really a reflection of hers.

Dementia keeps a person in the here and now and makes everything personal. What appears to be extreme selfishness is simply the inability--the inability, not the choice--to see anyone's view but their own. The concept of "I'd be angry, or sad, or hurt, if that happened to me" is just too abstract. One either is, or isn't. An inability to feel cognitive empathy is about twice as likely for people with early LBD than for a person with no dementia and increases as the disease progresses.

Takeaways:

Attitude: View your PlwD's uncaring attitude as a symptom of the disease. By accepting that understanding is no longer possible, it is easier to avoid being hurt.

Acceptance: Accept that your PlwD's responses are hard-wired and once made, cannot be changed. Accept that you CAN change and that you CAN choose how to respond.

Choice: Choose not to react out of pain, anger, hold onto resentment or see the PlwD’s lack of empathy as a failure on your part.

Action: Monitor your feelings and make an effort to show only positive ones around the PlwD, even in the face of accusations.
Action: Sympathize with their pain and move the action in a positive direction.

Self care: Use a support group to vent feelings that build up even though you understand intellectually that the PlwD's indifference is beyond their control. Use it to alleviate some of the loneliness you may feel too.

Action: Prepare ahead for social situations. One care partner made cards to hand out that read, "Please excuse Hank. He has a brain disorder that causes him to say things he normally wouldn’t. Our apologies.”

Treatment: Acceptance, with soothing responses if needed. Dementia drugs and non-drug remedies that relax and/or increase cognition can increase empathy temporarily.

We hope to have this book published before the year is over. You'll be hearing more about it as we go along.

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

References:

Eres R, et al. (2015). Anatomical differences in empathy related brain areas: A voxel-based morphometry study. http://www.frontiersin.org/10.3389/conf.fnhum.2015.217.00187/event_abstract

Heitz C, et al. (2015) Cognitive and affective theory of mind in Lewy body dementia: A preliminary study. http://www.ncbi.nlm.nih.gov/pubmed/25847396

For more 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.

Lewy Body Phrase for 10-23: Empathetic Communication

Empathetic communication is a non-drug option for behavior management based on the fact that to a person without abstract thinking, their delusions are true and their hallucinations are real.

1. Accept that your reality is as false to them as theirs is to you.
2. Accept that their beliefs are unchangeable.
3. Accept that explaining, defending or arguing is futile.
4. Use empathy to consider how you'd feel if you were them.
5. Respond in the way you'd want to be responded to.
• Agree, at least by action if not in words, (nod).
• With delusional accusations: Apologize and move on.
• With hallucinations: Check for safety and go with the flow.

For more 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.