A reflection on dementia, focused on those who remember
We often describe dementia using medical language, the language of plaques, tangles and cortical atrophy. These are the things we can see, measure, and define. Yet the real weight of dementia lies quietly in the spaces between people, in the slow fading of a shared life.
It is in the silence of a wife who hears her identity slip away as her husband forgets her name. It also resides in the quiet patience of a son who becomes a stranger to the man who once taught him how to hold a pen. Dementia does not just erode neurons; it unthreads relationships. It replaces conversation with repetition, closeness with distance, and recognition with routine daily care.
As clinicians, we learn to record decline in numbers. We use scores, stages and scales to calculate the progression of a disease. However, there is no score for absence. There is no stage that captures the moment when a spouse looks at their life partner and sees only polite curiosity. No scale can measure the emotional amputations these caregivers must endure repeatedly.
In every dementia clinic there sits another patient, the caregiver. Cognitively intact but emotionally worn. Dementia care is incomplete if it ignores the caregiver’s survival. Their mental and physical health deserves the same structured attention that we give to cognition and function of the dementia patient. When caregivers are supported, the dignity of two lives is preserved – their loved one’s and their own.
Dementia, at its core, is not only the loss of memory; it is the slow unravelling of a shared existence. To treat it well is to remember that our task is not only to slow a disease but to hold on to the humanity within it.
Momin did not write these lines for dementia, but they seem to speak to its pain more truthfully than any textbook ever could:
وہ جو ہم میں تم میں قرار تھا تمہیں یاد ہو کہ نہ یاد ہو
Woh jo hum main tum main qarar tha, tumhen yaad ho ke na yaad ho
The solace that once lived between us, whether you remember… or no longer do
Momin Khan Momin (1800–1852)
Writer: Dr. Wajid Jawaid
