When Memory Fades, Humanity Must Not

I was seeing my usual round of patients in the OPD when a nurse gently interrupted me. “Sir, there’s someone downstairs. They didn’t want to bring him up… He’s aggressive. The family is requesting you to come.” I walked down to a quiet consultation room at the far end of the corridor. What I saw there, I won’t easily forget.

Three men, one middle-aged and two younger, stood in a triangle around a frail, disheveled elderly man slumped in a wheelchair. His grey stubble had patches of drool on it. His eyes darted about the room, confused, wild and angry. As I entered, he shouted, a stream of incoherent abuse, then suddenly fell silent. Then, as if recognizing something in my white coat, he stared at me blankly. It was the kind of look that sees through you, not into you.

The younger men were his son and grandsons. They had brought him from Srinagar outskirts, but were too embarrassed, or perhaps afraid, to wheel him into the general OPD. He had been hurling abuses, trying to hit people and removing his diaper, defecating in corners. He had stopped eating properly. He often didn’t know who his own son was.

“I’ve taken him everywhere,” the son said, exhausted. “Neurologists, hakims, psychiatrists. No one could help. He is a retired officer, he was humble, polite. He wasn’t like this… He was a proud man. Built our house himself, brick by brick. Now… he lives in a room we lock from outside.”

Diagnosis: Advanced Alzheimer’s Disease

This elderly gentleman was in the severe or end stage of Alzheimer’s disease, where loss of memory is accompanied by major decline in physical, emotional and functional capacities. The brain, over time, loses control not only over memory, but also over basic bodily functions.

Such cases are complex and require multifaceted management, not just for the patient but also for the caregiver who carries the invisible emotional and physical load.

Management Protocol

1. Medical Management

• 
  Cognitive symptoms: At this stage, cholinesterase inhibitors have minimal benefit but may be continued if already tolerated.
• 
  Behavioral symptoms: If aggression, paranoia, or agitation are unmanageable, short-term use of antipsychotics may be considered, but always with careful risk-benefit discussion with your doctor.
• 
  Sleep disturbances: Melatonin may help with sleep-wake cycle disruption.
• 
  Pain/Discomfort: Many patients cannot verbalize pain. Some mild pain killers can be used empirically if pain is suspected (e.g., arthritis, pressure sores).

2. Functional Management

• 
  Bowel & bladder care: Diaper use with frequent changes, barrier creams to prevent rashes, and scheduled toileting every 2–3 hours.
• 
  Bed sore prevention: Reposition every 2 hours if bedridden, use air or water mattresses and inspect pressure points daily.
• 
  Mobility: Passive range-of-motion exercises under physiotherapy guidance if the patient is immobile. Encourage sitting upright during the day if possible.
• 
  Speech & swallowing: Monitor for difficulty in swallowing. Thicken liquids if aspiration is a concern.

Nutritional Management

Many patients in advanced Alzheimer’s stop eating well due to apathy, swallowing difficulty or forgetfulness. Malnutrition further accelerates decline.

Dietary Recommendations:

• 
  Small, frequent meals—prefer soft, calorie-dense foods (e.g., mashed potato, rice cooked in mutton or chicken soup, khichdi, mashed banana, boiled egg).
• 
  Hydration—Offer sips of water every hour; ORS, lassi, coconut water and soups are helpful.
• 
  Finger foods—for patients who won’t sit to eat (e.g., boiled potato chunks, toast fingers, soft fruits).
• 
  Nutritional supplements—Add protein powder (under doctor’s guidance), multivitamin syrup or prescribed nutrition shakes if intake is poor.
• 
  Avoid choking risks—No dry biscuits, hard candy or large uncut fruits.

Note: Feeding tubes (like Ryle’s tube) may be considered only if the patient is completely unable to swallow and is at risk of aspiration or malnutrition, and only after family counselling.

Counselling the Caregiver

Every Alzheimer’s patient has a parallel patient, the caregiver. Their grief is unique: they are watching a loved one slowly disappear.

Key Messages for Caregivers:

• 
  You are doing your best. The illness is not your fault.
• 
  Take breaks. Respite care is essential to prevent burnout.
• 
  Accept help. Other family members, friends and community groups must be involved.
• 
  Talk. Speak to doctors, counselors or family to process your emotions.
• 
  Stay safe. Don’t ignore signs of caregiver depression, get help early.

Reimagining Dementia Care in Kashmir (and Beyond)

Dementia is not just a medical condition—it is a public health crisis and social challenge. In places like Kashmir, where extended families are shrinking and institutional care is scarce, we need:

• 
  Community day-care centers for elders with dementia
• 
  Mobile geriatric units for rural outreach
• 
  Caregiver education programs in every district hospital
• 
  Telemedicine support lines for family members
• 
  NGO partnerships for respite care and end-of-life support

Bottomline

As I handed over the care plan to the son, he asked, “Will he ever be the same again?”
I paused and said gently, “He may not remember you—but you can help him feel safe, seen and loved. That is enough.”

When memory fades, humanity must not. In caring for those who no longer know themselves, we find the deepest expression of who we are.