Capgras Syndrome, Part 2 of 3

In last week’s blog, Tom talked about Donna’s Capgras syndrome. “Donna often thinks I’m ‘that other man’ and keeps asking where Tom went. Leaving and coming back sometimes works, especially if I change my shirt before I return. Taking her out for a treat works even better. She always knows who I am when she wakes up in the morning, but she’ll ask where I’ve been.” If you haven’t read last week’s blog, read it now, and then come back to learn what Tom can do to deal with Donna’s Capgras.

Do not try to re-orient. If Tom tries to tell Donna that he really is “Tom,” it will only lead to frustration and anger—for both of them. A PlwD* is unable to change their mind, once it has been made up.

Instead, Tom must provide Donna's neural pathways between her visual and mental templates of Tom  a chance to relax and re-connect, with the hope that this time the connection will be correct. (See last week's blog for definitions of templates.)

Decrease stress. Tom needs to do a survey of their surroundings, Donna’s health, his attitude, etc., and do what he can to reduce any stress he finds. Stress and anxiety greatly increases the likelihood and persistence of Capgras.

Accept. Tom must let go of his expectation—and hope—that Donna can be what she used to be. Yes, with LBD, Capgras is usually temporary, but Tom cannot make it go away. Donna will pick up his resistance and experience it negatively, which adds stress. Tom’s goal must always be to:

• avoid negative feelings, which increase BPSD* and
• foster positive feelings, which decrease BPSD.

Validate. Avoid  words and actions that invalidate, belittle, or discourage. Respond more to the feelings than the words. Instead of saying, “I’m Tom,” Tom can tell Donna, “Tom will be right back,” or even “Tom asked me to help you out.” This validates her view that "Tom" isn’t there now. Seeing an impostor can be scary. “I’ll keep you safe” offers support.

Use time. The PlwD operates in the present and so what happened even a few moments ago may not matter. Tom can leave the room and return a few minutes later. This may be enough to allow Donna’s neural pathways to relax and give them another chance to connect properly.

Change the environment. If Tom also changes his shirt, this changes Donna’s visual environment and her neural pathways may now connect properly. When Tom takes Donna out of the house entirely, as when they go for a ride, this even greater change has an even better chance of working.

Distract and redirect: Going for a ride also distracts Donna and gets her mind on the ride. If Tom suggests getting ice cream, that redirects her mind to the treat. With less attention on her perceptions of who Tom is, her neural pathways will often automatically connect properly.

Use an auditory connection. With Capgras, Donna must see Tom to misidentify him. Tom can call her on the telephone and connect that way. Or Tom can leave the room and talk to Donna, being careful to stand where she can’t see him. Or, from out of Donna’s sight, Tom can open and close an outer door, and announce that he is home, then enter into her sight. This auditory “preparation” may be enough to cause a good connection of Donna’s neural pathways.

Be an Improv player. (See 6/10/16 and 6/19/16 blogs) If Tom sees himself as an Improv player in a skit where Donna has set the scene, it is sometimes easier to let go of his expectations. Then he can play along, moving the action forward using the above techniques.

Next week's blog will be about dealing with Capgras in a care facility and using medication with Capgras.

* 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.