While I have had personal experience with a number of significant caregiving issues due to different types of dementia that affected some of my family members, none of my loved ones experienced the complication of Capgras syndrome. For this I am deeply grateful.
Capgras is a type of delusional misidentification syndrome (DMS) that may present due to any number of neurological diseases or psychiatric disorders. Although the exact prevalence of this disorder is unknown, a 1999 study estimates that it is present in between two and thirty percent of individuals with Alzheimer’s disease.
Since this disorder can seriously complicate a dementia patient’s quality of life and their caregivers’ efforts, I asked Erin Shvetzoff Hennessey, MA, NHA, CPG, and Vice President of Health Dimensions Group, to shed some light on this little-known condition.
Below, Erin examines the causes of this syndrome and the grief caregivers face when their loved one develops it, and provides tips on how family members can cope with a loved one’s delusions.
What is Capgras Syndrome?
“Capgras is a misidentification syndrome characterized by the transient, recurrent, or permanent belief that someone known to a patient has been replaced by an impostor with a strong physical resemblance. These delusions are suggested to stem from impairment of the brain's facial recognition system and are also associated with brain lesions. This condition is relatively rare, with limited research available, but it affects those with a variety of neurological and psychological diagnoses, including schizophrenia, Alzheimer’s and other forms of dementia.
“While dementia caregivers usually anticipate a loved one's forgetfulness and inability to remember close family members and friends, it can be very painful and confusing when this syndrome causes a different kind of loss of recognition. A loved one may remember their caregiver, spouse, or other relative—and may even ask for them by name—but they believe that this person is an impostor. Such delusions can make caregiving, family time, and other social experiences extremely painful and confusing.
Reality Orientation Techniques
“It is noted in Frontiers in Human Neuroscience (2014) that, 'A defining characteristic of delusions also present in Capgras syndrome is that patients will firmly hold on to their delusional beliefs in the presence of mounting contradictory evidence.'
“While some caregivers may continue to correct sufferers and try to convince them that they are merely experiencing delusions, the use of reality orientation techniques for sufferers of memory loss has declined in recent years. This strategy includes frequent reminders of present time, location and facts based in reality, including deaths, moves or other major life events.
“Reality orientation has largely been replaced by validation therapy that supports the patient’s delusions rather than correcting or contradicting these very real ideas, thoughts and feelings. Validation techniques have been found to reduce stress and anxiety in both dementia patients and their loved ones.
“For some sufferers, neither reality orientation nor validation techniques are successful, leaving both the patient and their loved ones frustrated, lonely and anxious. For these situations, a mixture of several techniques may be needed in order for both parties to enjoy spending time together. By working with the patient’s care team, including direct care providers, physicians, social work professionals, pharmacists and therapists, techniques and strategies can be developed to relieve the symptoms in the patient, as well as reduce the stress and frustration of loved ones. This can include communication techniques, medications, and creative problem-solving methods.
Interactions and Caregiving
“Research shows that time and interactions with loved ones who have Alzheimer’s or other types of dementia is valuable for both the patients and their caregivers. However, this delusional condition can make it difficult, if not impossible, for the patient and the believed impostor to interact. Some patients may blatantly refuse to speak or cooperate with the impostor.
“It is important for caregivers of sufferers find ways to spend time together that are helpful for both parties. This may include changing the format, timing and length of visits.
“If the patient does not live with those they do not recognize, these loved ones may have to visit during certain times of the day when the patient is more relaxed. ‘Impostors’ may need to visit along with other family members or friends that the patient recognizes, or even visit as a stranger, but these options may still allow for interaction.
“If the patient’s delusions make caregiving, living together and safety challenging, housing changes may be needed to ensure the emotional and physical health of both parties involved. In such cases, placement in a specialized memory care unit might be the best option.
Stages of Grief
“There is a saying that the only cure for grief is time, but for the loved ones of those with Alzheimer’s and dementia, the grief process occurs three times. The first time, initial grief begins with worsening symptoms or a new diagnosis, and this is often accompanied by anticipatory grief, or worry about the future. The second round happens upon losing the ability to communicate with the patient and loss of recognition by the patient. The last instance occurs after the physical death of the patient. For family members and friends of a loved one with Capgras, the second stage of grief is much more complex.
Care for Yourself Too
“Alzheimer’s and dementia caregivers already experience serious emotional and physical strain, and this is only compounded by the development of Capgras syndrome. It is important for family members and caregivers of sufferers to care for themselves in order to better care for their patients. This self-care can include increased time away from the patient, self-acceptance of limitations and reliance on other support systems including friends, family, community and healthcare resources.”
Tips for Interacting with Someone who is Suffering from Delusions
- Validate their feelings and concerns: Rather than challenging their perspective, make it clear that you understand how they are feeling and that it is perfectly acceptable for them to feel this way. Try to identify with their reality rather than correct it.
- Make a safe, emotional connection: Dementia alone can be extremely confusing and disorienting for a patient. Adding delusions that someone they trust has been replaced with an identical fraud can be very frightening for them. Remind the patient of how much you love them and how much the “impostor” loves them. If the patient has additional misconceptions that this fake is trying to harm them or steal their money, gently reassure them that they are safe and you will not allow anything of the sort to happen.
- Rely on auditory interactions: Since this disorder makes it difficult or impossible for sufferers to visually connect with loved ones, sound is the next best way to communicate. Rather than visiting face-to-face, try conversing over the telephone or just outside of their line of sight. If a patient has difficulty interacting in person, it can help for the impostor to announce themselves while still out of sight. This helps to establish an emotional connection and begin a conversation that continues while they come into sight. This may assist the patient in positively identifying their loved one.
Thank you, Erin, for enlightening us about this complication of dementia. This condition causes unspeakable grief for entire families, and it is helpful for some caregivers to hear from an expert that it is okay to place a loved one in a care facility and/or limit visits if they lead to emotional distress.
Erin Shvetzoff Hennessey has spoken at state and national meetings on a variety of topics, including senior health care, health care reform and planning for aging populations. More information can be found on her website.