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Tuesday, December 20, 2011

"A Caregiver's testimony from Delhi, India" on “The Indian Caregiver’s Corner”.

Testimony edited with permission of Mrs Anusuya Datta, primary caregiver with her mother in Delhi of their husband/father suffering from a neurodegenerative disease, a type of dementia : Progressive Supra Nuclear Palsy (PSP).

“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India. 

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

A Family Caregiver sharing her experience in Delhi:

"I am from India, New Delhi. My father has been recently been diagnosed with PSP (progressive supra nuclear palsy) with frontal dementia. the docs said its pretty advanced stage. he suddenly took a plunge two months back and from a walking talking man he is bed ridden with almost zero speech abilities and even abillity to understand basic requirements of life like food and toilet etc. we are quite new to the whole thing. Dad had been showing some very weird behaviour -- to the point of being extremely selfish and conceited in the last few years. 

We had suspected dementia or some kind of mental problem but since his memory was more or less intact, The docs never took our worries serioiusly. Meanwhile his movements were getting slower and difficult. the orthos we consulted couldnt come up with any reasons naturally. Its only when he has taken to bed and cant walk without help and shows a very prominent backward gait and almost zero eye movement and a mask-like face -- which i am told are the give away signs of PSP. 

To cut the long story short, I am here to get some first hand knowledge about how to deal with such patients. We dont have much support in terms of local support centres or counsellors. Also, I believe world over not much research has been done on PSP."

"In delhi there is next to nothing in terms of supprt and good diagnosis. From the little I have interacted and read up in the last few months I think the indian govt doesnt have a policy on dementia and general elderly care. dementia is a mental disease for the elderly here.and as per indian mindset,elderlies who need care are always destitutes or people who are not taken care of by their children. There seems to be no middle ground. 

I dont know in terms of research, but at least that hasnt created awareness or even empathy among the medical fraternity at large to even diagnose the disease instead of dismissing it as just another mental/spousal problem.which is what we faced for the last 2/3 years. When dad was showing distinct signs of dementia, the docs said it was his problem with mom or us, may be we didnt treat him right etc etc.

Finally when he fell sick and lost almost all capabilities of moving or speaking etc, Even then the docs at a very premier institute of mental health and behavoiur (VIMHANS) in delhi dismissed it as not dementia. They said he is a selfish man with selfish needs and there is nothng that can be done about it. They kept him for one and half months and ran tests and drugs on him like whatever they felt like. Finally they couldnt explain what his problem was. 

Later when I took him to another establishment under the supervsion of another doctor who deals in dementia and geriatric studies, just by looking at his gait, eye movement and his history they diagnosed his problem as PSP with frontal dementia. 

I just dont get it. either the first set of docs simply didnt care, or they didnt know.thats how I have been seeing people around us behaving. Also, in terms of supprt groups, trained attendants.there is simplky next to nothing, at least in delhi. and cost? lets not even talk about it! there is no sate support. everything -- from diapers to attendants -- are so expensive. in india, its supposed to be a disease of the rich its just been a few months and we dont even know as simple middle class people how we will drag it for the years to come!!!!"

Alzheimer's Disease in India :
Thank you so much for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your mother feel comfortable through the disease.
Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.
So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.

More infos on PSP at :

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