Capgras Syndrome: Tips for Caregivers

Capgras syndrome (CS) is a condition that causes delusions that could have you trying to explain to a loved one you are not an imposter. This psychological disorder often complicates the daily quality of life for those with the disorder and their caregivers.1

What is Capgras syndrome?

A delusional misidentification syndrome (DMS), Capgras causes disruptions in the brain’s facial recognition system. These delusions have a person thinking someone close to them, a spouse, parent, close friend, or family member, has been replaced by an identical-looking impostor.2

Although relatively uncommon, Capgras is associated with neurodegenerative disorders including Parkinson’s and Lewy body dementia (LBD).3 Anyone caring for someone with these conditions has likely experienced the stressful ups and downs of caregiving. As a caregiver, a reward can be signs of love and appreciation from the person being cared for. In the case of Capgras, this recognition may be missing because of the strong visual confusion experienced by people with CS. Their loss of recognition and lack of emotional response can be painful.

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Help for families and caregivers?

Wanting to correct the notion of imposters can be frustrating and upsetting for caregivers as well as those experiencing the delusions. Delusions are fixed, unfounded beliefs; attempts at making corrections, sometimes called reality orientation, tend not to be effective. For caregivers, learning to accept that those with CS are not malicious is helpful to accepting the condition. Vilayanur S. Ramachandran, PhD, known for his work in behavioral neurology and visual psychophysics, says the lack of visual recognition can be terrifying for someone with CS. Validation theories whereby caregivers acknowledge the delusions as truths but provide reassurance that the imposters are not harmful, is an approach to constructive care.4

Risk of violence

Capgras delusions are irrational beliefs, the result of a neural recognition disconnect. Because of this, there is a significant risk of violence against the person who is misidentified as an intruder.1 There is particularly increased risk in male patients, in those who have had delusions for an extended time, and in patients with concomitant paranoia or substance abuse.

Tips for coping

Guidance for caregivers covers several categories including communications and creative problem-solving techniques as part of the caregiving regimen, as well as important ways for caregivers to care for themselves.

When tending to someone with CS, it is ok to validate their feelings and concerns, reassuring them they are safe. Sometimes positive results can be achieved when altering activities or timing of visits.3

Rely on auditory interactions. Making a visual connection to someone with CS can be difficult or impossible. Try sound (voices) as an alternate way to communicate. Talking on the phone may work if face-to-face visits are stressful. Some people find that speaking on the phone helps establish an emotional connection that can be continued as you walk into the room, thereby making a person with CS feel safe and loved.

Caregivers need care too

Just like positioning emergency oxygen masks on an airplane, caregivers need to take care of themselves first. When a primary caregiver is sick, burnt out, or otherwise disengaged, they are neither helping the patient nor themselves. In caring for others it is important to:

  • Schedule time for yourself. Time to exercise, eat right, see friends and get outside the house.
  • Recognize limitations. These problems cannot be fixed; Capgras is not a curable condition. Caregivers can provide support, reassurance and a sense of calm to the environment; some things will remain outside of your control.
  • Take a break. Rely on outside support and accept offers from friends, family, and community to provide relief, or hire someone to enable time off to see friends and relax.
  • Prioritize tasks that need to be completed. Delegate what you can. Good time management skills, checklists and an understanding that not everything will get done can help.
  • Consider joining a support group; you are not alone on this journey.

Fundamentally, it is important to remember that delusions in a person with CS, and other symptoms are caused by brain changes and not true indications of how the patient truly thinks and feels.

Check out a resource on the Parkinson's Foundation website and on the UCSF website to help with creative ideas, tips for self-health and organizational readiness.

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