Throughout the many years I have been writing about Alzheimer’s, I have written several articles about a loved one living with dementia who may no longer recognize you. As for me, this was one of the harshest parts of caring for my dad. His Alzheimer’s disease did this to both of us. I took care of this precious man for over a decade and during the latter part of this caregiving campaign, he looked at me one day and said very firmly “Who are you and what the heck are you doing in my house?” (Needless to say, I did tone down his language for the reader.) It’s hard to explain how hurtful this is. The first time this happened it actually felt as if someone thrust a knife right through my chest.
If this wasn’t enough, while caring for my mom who was diagnosed with vascular dementia, she would look right at me and say, “Don’t even try to tell me you’re Gary!” She honestly believed I was trying to fool her as some kind of imposter. This is essentially known as Capgras Syndrome (CS).
Capgras Syndrome, also known as Capgras Delusion, is the irrational belief that a family member or friend has been replaced by a doppelganger.
A recent study has found this syndrome affects around 16% of people dealing with neurodegenerative diseases such as Alzheimer’s and Lewy body dementia. This also has been found with some people who have experienced a traumatic brain injury and other types of dementia. Sadly, what seems to fall into place is the (mistaken) imposter is most commonly the person or people who are around the most. In most cases, that person is the caregiver(s).
We need to understand arguing about this delusion will only make the situation worse. We need to employ ways to redirect them. I’m a firm believer in utilizing their senses. Redirection through taste and touch are huge. You may have to get creative and just go with the flow. By telling my mother I was going to get Gary for her and stepping out of the room for 5-10 minutes, only to step back in saying, “A gentleman just told me you were looking for me.” In most cases, this did the trick. If not, it would make for an exceptionally long day.
The bottom line is Capgras Syndrome is painful for both parties involved. If the person with dementia realizes they have been mistaken, it is extremely upsetting to them. As for the caregiver who is giving it their all, it is heart wrenching.
Gary Joseph LeBlanc
Director of Education
Dementia Spotlight Foundation