Dementia and Capgras Syndrome: Handling Behavior and Emotional Fallout
Capgras Syndrome, also known as Capgras Delusion, is the irrational belief that a familiar person or place has been replaced with an exact duplicate — an imposter (Ellis, 2001, Hirstein, and Ramachandran, 1997).
This is something that I see periodically in the population of Alzheimer’s Disease and Related Dementia (ADRD) patients I work with as director of care for a home care agency. Named for Joseph Capgras, the French psychiatrist who first described it, this delusion also sometimes is seen in people who have schizophrenia or bipolar disorder, or where there has been some type of brain injury or disease. Regardless of its source, it is likely less rare than is typically believed by psychiatrists and psychologists (Dohn and Crews, 1986), and therefore deserves more public and professional awareness.
It can be highly perplexing and upsetting for both the person experiencing Capgras, as well as for their caregivers and those who are the misidentified “imposters” (Moore, 2009). There are more effective ways to help manage someone suffering from Capgras and dementia, as well as methods that likely will increase management difficulties. Unfortunately, the approaches that are likely to increase difficult behaviors are the very ones to which family and professional caregivers instinctively gravitate (Moore, 2009). However, we find effective guidance in all aspects of dementia behavior management — including Capgras — when we turn to Habilitation Therapy, the compressive behavioral approach to ADRD that the Alzheimer’s Association finds to be a best practice (Alzheimer’s Association, 2001, n.d.).
Three core concepts found within Habilitation Therapy can be most helpful in dealing with Capgras Syndrome (Moore, 2009). They are to:
- Enter the reality of the person with dementia
- Never argue or correct
- Focus on creating positive emotional experiences to address challenging behaviors
Let’s explore each in more depth…
- Enter into their reality. Imagine for a moment what it must be like to truly believe that a person or place you care about is an imposter. Someone you count on and feel close to, the comfort and safety of your own home is all some weird, unfathomable charade. As if the world wasn’t already topsy-turvy with having dementia, now this trusted person or beloved place is somehow involved in a fraud with an identical imposter! How horrifying and upsetting such a situation must be. Who and what can you trust? What is safe? Real? Seeing the world through the experiencer’s eyes is the first step to understanding their needs (Alzheimer’s Association, n.d.).
- Never argue or correct.Focusing on correcting a dementia patient’s constantly twisted information and misguided understandings creates a never-ending struggle. A person with dementia cannot keep “facts” straight, and correcting them will not help for more than a minute or two. Arguing that they are wrong and trying to prove it to them is unlikely to yield anything but resentment, discouragement, and hurt feelings. Habilitation Therapy says to stop arguing and correcting immediately and in all cases. Care partners need to let go of having the objective “facts” set right – it just cannot be done. Trying to do so can seriously damage the relationship with the person with dementia, and feelings of love and connection can quickly be replaced by resentment and anger that go both ways. This is particularly true with Capgras, where the very nature of care partners’ relationships are called into question.Having Capgras Syndrome is not the dementia patient’s fault. It is not the care partner’s fault either, and they must stop taking the problem as a personal insult, and trying to correct its misguided conclusions. The confusion is just the disease at work. (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.).
- Create positive emotional experiences. In this situation, where your ability to think through and solve problems is seriously impaired, what would your needs be if suddenly faced with an imposter? I’d bet on needing reassurance, love and connectedness, and feeling safe. It is up to a dementia patient’s care partners to help create an environment where such emotions can thrive. (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.).
Putting it All Together
Here are elements of an Habilitation Therapy-consistent response to an episode of Capgras Syndrome (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.):
- Acknowledge their feelings. “Of course this is upsetting. Are you OK? I’m so sorry this is happening to you.”
- Get and stay emotionally connected. Connect to the emotional aspect of the dementia patient. “I care about you. You are safe with me.” Or “[Name of person with the imposter] loves you. I love you too. She or he sent me while she or he can’t be here. You are safe with me.” However it can be done, a warm emotional connection must be made and maintained.
- Send the imposter away. If another person is present, that person can shoo away the imposter and say to the dementia patient, “I sent them away. You are safe with me.” In a while, have the loved one return, and engage immediately on an emotionally positive level. Have the other person recognize them as who they are, also engaging warmly and emotionally.
- Connect through the ears. Have the person with the imposter connect through sound only. For example, come home and shout from outside the sight of the dementia patient, For example: “Hi, honey, it’s your husband Bob, I’m home! I can’t wait to tell you about my day! How are you?” – or whatever makes a connection to the warm emotions in the relationship. Keep talking as he or she comes into sight, connecting emotionally. “You look so great in that color shirt. I love you, and I just saw our uncle Bob who also sends his love. Dinner smells great! What’s cooking?” This may help make a positive identification of the “real” person more possible (Ramachandran, 2007).
Connecting emotionally and warmly to the person with dementia is key to successful management. Arguing and proving through logic and fact that the person with dementia is wrong will not work. Each person’s malfunction is unique and each needs a unique intervention in the moment; creativity by care partners will be needed to find the most effective approach. But the basic underlying Habilitation concepts for successfully managing Capgras remain the same case to case (Alzheimer’s Association 2011, n.d., Snow, n.d., Moore, 2010, n.d.).
Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. (Watertown, MA). p. 68.
Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. (Lawrence, MA)
Ellis, H., Lewis, M. (2001). Capgras delusion: a window on face recognition. TRENDS in Cognitive Sciences Vol. 5 No. 4.
Hirstein, W., Ramachandran, V.S. (1997) Capgras Syndrome: A Novel Probe for Understanding the Neural Representation of the Identity and Familiarity of Persons. Proceedings, Biological Sciences, Vol. 264, Issue 1380, Mar. 22, 1997), 437-444.
Dohn, H., Crews, E. (1986). Capgras syndrome: a literature review and case series. Hillside J. Clin Psychiatry. 1986; 8 (1): 56-74. Retrieved January 23, 2013 from www.ncbi.nlm.nih.gov/pubmed/3744300.
Moore, B. L. (2009). Matters of the Mind and the Heart: Meeting the Challenges of Alzheimer Care. New York: Strategic Book Publishing.
Moore, B. L. (Nov. 20, 2010) StilMee™ Certification for Professionals: Working respectfully and effectively with people with Memory Loss [Training Course] Burlington, MA.
Ramachandran, V.S. (2007). V.S. Ramachandran: 3 clues to understanding your brain. TED Talks. www.ted.com/talks/vilayanur_ramachandran_on_your_mind.html.
Silva, J., Leong, G., Weinstock, R., Boyer, C. (1989). Capgras Syndrome and Dangerousness. Bull Am Acad Psychiatry Law, Vol. 17, No. 1, 1989 (13).
Snow, T. (n.d.) The Art of Caregiving. [Video] Florida: Pines Education Institute of Southwest Florida.
Bier, D. (2016). Dementia and Capgras Syndrome: Handling Behavior and Emotional Fallout. Psych Central. Retrieved on October 24, 2016, from http://psychcentral.com/lib/dementia-and-capgras-syndrome-handling-behavior-and-emotional-fallout/