Using the term "pseudodementia" contributes to the mismanagement and mistreatment of the disease.
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Tanya J. Uritsky, PharmD, BCPP, is an opioid stewardship coordinator, cochair of the Penn Medicine Opioid Task Force, and PGY-2 pain management and palliative care residency program director at the Hospital of the University of Pennsylvania in Philadelphia.
The words we use as health care professionals can drive stigma. Stigma can be deadly, keeping people in need of care in the shadows, fearful of incurring judgment and shame should they seek help. Stigma may also be embedded in patients’ experience of pursuing mental health care in health systems, and I can attest to its impact on morbidity and mortality as well as grief and trauma.
My 71-year-old mother fell into an acute severe depression last year, and we quickly lost her to a rapidly progressive mental illness. As her illness progressed, she encountered inpatient psychiatric care multiple times, and each time it was more traumatic. Perhaps the most traumatic experience, however, was after her death, when the results of her brain biopsy revealed that she died of pseudodementia. This was the first time any of the multitude of providers she had seen used this term, and it stung so badly. There was nothing fake about it: Pseudodementia led to her death.
The meaning of the term pseudo is “false, pretended, and unreal.” However, the issues my mother and our family experienced were very real. Her depression was the most severe I have ever seen, yet she was not suicidal, so she was not of high importance to the health care professionals in the inpatient unit where she was being cared for. She had lost 40 lb in 6 months and was unable to care for herself, yet the psychiatrist at the inpatient facility said she did not “have failure to thrive” because she was eating a single cheeseburger every day. The psychiatrist was not concerned.
Tests were carried out to look for dementia, and the scans showed atypical tissue but not in the pattern of Alzheimer or Lewy body dementia. At this point, the geriatric psychiatrist advised that my mom be admitted to another inpatient unit. My mom went, voluntarily but begrudgingly. Her providers insisted this delusional woman with severe depression would have to agree to treatment with electroconvulsive therapy (ECT) by saying the word “yes,” and they would not seek guardianship. When we pressed the provider about her ability to make this decision, they insisted she was capable. My mother persisted in ambivalence to receiving ECT, saying “I guess,” whereas they insisted that she must say “yes.” They would also not ask for a consult to have her assessed for the treatment she desperately needed either.
The day before she was discharged from the inpatient unit, we were told she had had a fall. Yet it became very apparent in the emergency department (ED) and then again at home that she was having delusions. She would lie on the floor and say she could not walk and could not get up; although she had not fallen and was physically capable of walking, her delusion made her believe she could not.
Amid her psychosis, my mother ended up getting placed on a 302 (an involuntary commitment) because she was trying to jump out of moving cars and run out of our home in the middle of the night. At this point, we felt she would finally get the ECT she needed, and the health care professionals would finally acknowledge how bad things were for her. Unfortunately, she was admitted to yet another inpatient unit where they did not know her, and they would not allow her to have contact with her family. They told us they were too busy for family, which they said usually did not cause “problems” as most patients were estranged from their family members. The inpatient unit did not have her psychiatric records, yet switched her from 200 mg of quetiapine fumarate (Seroquel; Cheplapharm Arzneimittel GmbH) to 0.25 mg of risperidone (Risperdal; Janssen Pharmaceuticals, Inc) and she was subsequently admitted to the ED for acute change in mental status or psychosis. It was not until I called and asked what medications she was taking and what had changed to lead to this admittance that I learned of this medication change; as a palliative care pharmacist with knowledge of the issue, I was the one who had to tell them this was not a therapeutic interchange and was the cause of her symptoms.
After I spent weeks convincing the psychiatrists this depression was an acute change, not a chronic dementia, they agreed to have her transferred for ECT, which they said would be at the end of the week. Alas, the facility let us know they would not write a letter to say they would take her back, so they discharged a woman with psychosis back to an assisted-living facility with no shoes on and no ECT. When we insisted they find her shoes, they gave her someone else’s tattered shoes. On the day after her discharge to the assisted-living facility, I went to check on her and found her in bed, where she had slept for 24 hours. She had not eaten or drunk anything during that time. Despite this, the facility had not assessed her for change in care needs.
The rate at which things progressed from this point was exponential. When I visited a day or two later, she had become fully incontinent of urine. A few days later, caregivers reported that she was incontinent of stool. She then stopped being able to feed herself and had lost at least 60 lb. We were told, “At least she still remembers you; that’s good!” Yet there was no acknowledgment that this remembering could help identify that the issue was her severe depression and psychosis, which were not being treated.
My mother died in hospice. She refused to go back into inpatient psychiatric care, and we refused to put her there. We honored her in our home and spent whatever time she had left with her because we knew that if she went into another hospital, she would surely die there. I am a palliative care–trained pharmacist, and I was able to give my mother a good last 2 months of life and a comfortable death, which was such a blessing.
The saddest part of her death for me is that she did not have to die from this disease. The system had written her condition off as “fake,” and nobody told us this was their assumption. As soon as it was labeled pseudodementia, her experience was not important, and she was not treated. The power of this term in my grief is inexplicable.
We must do better. Older adults are dying from this disease, and the most effective treatment for the underlying cause is ECT, and it is being withheld or not offered. Stigma is preventing health care professionals from appropriately caring for and treating patients in dire need of their support.
During a follow-up visit, the psychiatrist refused to acknowledge that she had failed my mother by not seeking the treatment that would have saved my mother’s life. She blamed me instead, saying it was my responsibility to recognize that her care was going nowhere. When I told her we were consulting palliative care, she said, “At least that came out of your mouth, not mine.”
We must embrace the fact that people can die from mental illness and not just because they commit suicide. We must also recognize that people with mental illness need their support system and should not be cut off from those who love them because it is inconvenient. The system failed my mother despite our fearless advocacy for her the entire way. I am on the inside of health care, and I could not help her.
My mother suffered for an entire year, trying desperately to get help. Everyone dismissed her because others were sicker or because they had given up on helping individuals with her condition. There is nothing fake about this disease; it led to her death.
