The Whitworths of Arizona, bringing science to you in everyday language.

Sunday, March 25, 2018

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.


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


Eres R, et al. (2015). Anatomical differences in empathy related brain areas: A voxel-based morphometry study.

Heitz C, et al. (2015) Cognitive and affective theory of mind in Lewy body dementia: A preliminary study.

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.

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