Alzheimer's Disease in India Consultancy Service

If you have a project, contact us for advice at

Join our Family Caregivers, Volunteers and Care Professionals on Facebook and LinkedIn.

Sunday, January 1, 2012

The Hospital experience in India for persons suffering from Alzheimer's Disease and Related Disorders and their Family.

"Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates"

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and the heart-break and decisions and dilemmas involved. 

"Your father was admitted to the hospital for some problems. Could you describe the problems, his stay, and the overall experience?

"One common problem we faced was that the nursing staff had no idea how to deal with someone who could not understand and would not co-operate, but even then they would not allow caregivers to be present alongside when treatment had to be given to the patient preferring instead to get wardboys to hold the patient down. 

He would try to fight off nurses trying to put in a canula or draw blood for tests. He would get agitated even with a blood pressure cuff being slipped on his arm unless one of us held his hand and told him what was going to be done and that it was okay because it was treatment and we were watching. 

We usually had to request the doctor to give instructions to the nurses to be allowed to be with father when injections were administered, when a Foley’s catheter was inserted, or a bladder wash was done, when blood pressure readings were taken, or nebulisation was given. 

Such instructions had to be repeated to the new nurses whenever their shift changed. Also, whenever a new doctor was given charge of my father’s care, we would have to convince this new doctor to instruct the nurses to allow us to be with father. This whole process would have to be repeated all the time."
My general observation was that regardless of how grand (read expensive) or not the hospital, the staff in charge of patient hygiene (ayah/maushi, ward boys) uniformly displayed apathetic behaviour. They were not sensitised to patient’s comforts. They did as little as they could get away with, and they did it as cursorily as possible and only did the work after being asked to repeatedly."
One point that I wish to emphasise here is that in all our experiences with doctors over the years we were able to ‘discuss’ on equal footing (i.e. without being cursorily brushed off as laypersons) only when we had done our homework (with knowledge garnered from the Internet) that showed we could understand medical issues and treatments. 

When we were ignorant of some issues or exhibited any hesitation, doctors uniformly gave us patronising responses that were not sufficient to understand the treatment being given. They did not actively help us to understand enough to make a decision suitable for our situation."

READ the Full interview at :

1 comment:

Swapna Kishore said...

Thank you for highlighting this interview on your blog. This is to inform your blog visitors that more caregiver interviews are also available at the Dementia Care Notes site. See the full list at:

For more information, feel free to contact me at

Swapna Kishore
Dementia Care Notes