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Tuesday, August 30, 2011

A Dementia Caregiver shares her "wishlist" to settle quality dementia care Managment in India.

"Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver".......

What is your wishlist as a caregiver, in terms of what you would like from various support systems and persons around you?

Before I write this I must emphasize that I write it from only from my viewpoint — I do understand that many of the items that I wish for may not be feasible or practical, so to some extent this will be a one-sided viewpoint.

  • Government sponsored awareness ads on TV about the symptoms of dementia along with how to care for them;
  • More well-run memory clinics at Government hospitals could be sponsored and run by corporates or NGOs;

  • Dementia care to be taught to all nursing staff and doctors, and maybe a small refresher course for existing staff. I understand that most of the existing staff will be very reluctant to retrain but if it is a well-run program it will be successful;

  • Government should check on Ayah bureaus and rates should be fixed ( as per labour laws for 9 hours a skilled worker in a hospital gets Rs.200 per day, and a semi-skilled Rs 185);

  • Government -NGO collaborated day care centres at least 4 for each big city with payment based on your ration card; you pay more if you are in the high income group;

  • Medical council should write to all their members about dementia – and this should be followed up by NGOs who visit GPs area wise with a presentation and pamphlets;
  • Using lists of GPs available from the medical council, the NGOs and volunteers should follow up with GPs regarding dementia awareness and resolve any queries that GPs have. This follow up could also be a research project along with colleges and Pharma companies ( who will benefit by increased detection); 
  • From Pharma companies, dementia medicines available in syrup form as most patients have problem in swallowing tablets;
  • From NGOs, work with ALMs (advanced locality Management) to set up a volunteer base of elders who will check up on those needing help in their locality. Actions taken could be something as simple a home visit to cheer up a dementia patient or an elderly person;
  • Senior citizen groups could also help by arranging home visits to dementia patients.

That is quite an exhaustive wish-list. Could you select a couple of items that would make a great difference to you and improve your ability to care/ balance your life around the caregiving?

  • Lowering of ayah bureau rates;
  • Help from senior citizen groups for home visits. There are several senior citizen groups in Mumbai, particularly amongst morning walkers. Maybe they can form a home visit group and engage patients and other elderly immobile persons who are home-bound, by doing activities like singing songs with them or playing simple games. This would really help in my Mum’s case because she is so lonely at times and she would like to be part of a chattering, jolly group."

Read more at Dementia Care Notes Website :

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