The saddest part of Alzheimer’s Disease is not just the pain of watching one’s beloved father or mother turn into a total stranger but the “collateral damage” it inflicts on the family, points out T. K. Radhamonie, a retired engineer and one of the founder members of ARDSI.
“Älmost all Alzheimer's patients would have associated psychiatric problems and behavioural issues that can grossly interfere with their family's life and environment. With absolutely no social support system or a dedicated cadre of care-givers trained to take care of those with dementia, most families today find themselves at a loss, caring for the dementia patient. The family members might have to deal with possible lost employment opportunities, displacement…,” says Mr. Radhamonie.
As one who was the primary carer for his wife for 14 years, he considers himself lucky that he was retired and fully available to give hands-on care for his wife till the very end.
But today, the social and family system in the State has changed so much that there is very little sympathy or support for the Alzheimer’s patient from within the families. There is no other disease which is more challenging than AD, when it comes to care-giving.
“They need the kind of tender loving care which you lavished on your children when they were young, but minus the dreams or expectations which kept you motivated when you were bringing up your children. The carer should know what to expect, which might make their job slightly easier,” Mr.Radhamonie says.
Overseas migration of young adults in the family, dual employment of both son/daughter and their spouses, a drastic change in modern work environments with the young adults in the family spending more time at workplaces than at homes are all social factors that have come to have major consequences on the care of those with Alzheimer's.
Awareness about AD has certainly gone up and ARDSI gets innumerable calls every day, with families begging or pleading for help to take care of their demented elders. But as an NGO, ARDSI can only do so much.
Studies show that an estimated 4.5 to 5 per cent of those above 55 years in the State have dementia and this proportion is set to explode in the coming years, given the growing population of elderly in the State. Yet, it is sad that the enormity of the problem does not figure anywhere in the State’s list of priorities.
ARDSI can offer its support and expertise but it is time that the government stepped in a big way to improve the social support system for families coping with dementia. Dementia should become a public health and social welfare priority and the need of the hour is to develop a cadre of care-givers who are specially trained to take care of dementia patients. ARDSI offers a lot of training and counselling to families on taking care of those with Alzheimer’s.