Apathy seems to be a symptom discussed by caregivers more than most, and they often talk about the loneliness they feel as a result.
Yet, on first glance, I didn’t believe this could be a real symptom. It sounded made up, but as I reflect on specific instances and on my general feeling, I can sense it. And when I reflect on this, it scares me. It may however be a bit of a blessing in disguise for patients despite the pain it causes others.
According to CurePSP, “Apathy is a lack of motivation, interest, or concern. It is not the same as depression, although the two can occur together. Apathy is common in PSP and can be one of the earliest signs of the disease. It may appear as a lack of initiative, reduced emotional expression, or seeming indifference to activities or people that once mattered.”
Research indicates that apathy occurs in 50–70% of PSP cases, compared to 70–90% in Alzheimer’s patients, and less frequently in Parkinson’s disease patients during “off” periods from medication.
While PSP is not yet fully understood, it shares the TAU protein with Alzheimer’s. TAU is a protein that helps stabilize brain cells, but in PSP and Alzheimer’s, it becomes abnormal and contributes to neurodegeneration. This overlap in pathology helps explain some of the shared symptoms, including apathy.
While I initially perceived apathy as a somewhat fabricated symptom, a specific incident profoundly changed my perspective. A while ago, my wife cut herself badly in the kitchen while I was in the lounge. She called out, “I am bleeding, I have cut myself,” and I recall just sitting there, hearing it, and about 10 seconds later saying in a soft, non-interested voice – “ok.” The same thing repeated with more frustration from my wife, and then my daughter said, “Mummy has cut herself.” Eventually I think I said, “What can I do?” but it was already taken care of, and it was with a voice that implied I was not the least bit interested.
This shift is a marked departure from my usual self, someone quick to declare a national emergency and rush to a hospital in the event of a crisis. The emotional dulling I now experience contrasts sharply with my former impulsive nature. Although a friend once described me as “an empty tin can”—an American’s way of saying his British friend is emotionally reserved (understatement)— to some this may feel like the same old me with an added emptiness.
More generally, I am seeing a diminishment in my own passions, such as following my football team, the thrill of competition (I don’t mind losing at chess which is not me!), or the excitement of travel. The awareness remains, but the emotional intensity seems lessened.
Of course, this apathy could be mistaken as a convenient excuse. However, its implications are far more significant. Caregivers’ accounts on support forums are heartbreaking. Comments such as “My husband is just not my husband anymore,” and “I feel so lonely as he doesn’t engage or seem to take note of me” reveal the profound impact. The person is physically present but emotionally absent, barely recognizing, laughing, or engaging, creating a deep sense of loss for loved ones.
It is interesting how many caregivers take heart from the occasional smile of the patient when, for example, they see their grandchildren – it is a seeming resistance against apathy. I hope personally for this.
From a patient’s perspective, perhaps (this is conjecture) apathy might serve as a form of anesthetic, dulling the pain of cognitive decline, such as memory loss and the sadness in loved ones’ eyes. Without apathy it must be so painful to be aware that you are hurting those around you so much.
It might also dull the simple pain of massive changes in life and may soften the impact of the disease’s progression, offering a degree of comfort. I am not aware of any real scientific validity in that but have seen some psychological research – but as a patient going through the journey, I feel this way.
I have explained to my wife and children the likelihood of significant behavioral change. I have stressed to them that this potential change upsets me the most, alongside cognitive decline. I have asked them to try to understand that it will not be the real me and that they should hold onto their memories of me as they know me. I’d ask that my friends and other family members bare that in mind too.
Nonetheless, my heart breaks when I think this may happen to my wife as we progress, as well as to my kids.
My aim is not to dwell on apathy’s darkness but to shed light on it. By understanding this symptom, patients and caregivers can navigate challenges with more compassion. Recognizing apathy as a potential shield against pain allows me to think others can approach it with empathy, offering support and understanding instead of judgment. It’s a reminder that even as the disease progresses, the person within remains, deserving of love and connection.
One Response