It all started in 1999 when Dr Amit Dias was writing his thesis on Alzheimer’s in which he would visit door to door to realise that a lot of people in Goa had dementia. It is a disease which affects mainly senior people who gradually lose their memory retention power. It is a progressive memory loss to an extent that it affects ones day to day routine activity. Dr Dias is a founder secretary of The Dementia Society of Goa which was founded in 2002.
Lot of focus are now being stressed on prevention as the physicians have now realised the cause of dementia. “The deposition of abnormal protein Beta Amyloid in certain sections of the brain causes this disease. Whatever can prevent the deposition of this protein can help fight dementia,” said Dr Amit Dias MD who is also with Department of Preventive and Social Medicine at Goa Medical College.
The Dementia Society of Goa was started with help from Professor of neuro surgery and Professor of neurology of the Goa Medical College. Today it has seven core members. The Society was set up primarily because it was noticed that a lot of people suffering from this disease were not seen visiting and taking help from the hospital. Patients were not capable to visit the doctors on their own and their family members never had the time to take them to medical care prior to 1999. Secondly, there was lack of awareness.
“In my study it revealed that about 2.9 per cent of the people above the age of 60 and around 12.5 per cent of the people above the age of 80 had dementia.
It is not only age related but also ageing related disease. In India, it is estimated to have around four million people with Alzheimer’s and dementia which is huge number and almost 90 per cent of these people do not even know what is going wrong with them,” added Dr Dias.
Realising this, the Society developed a psycho social intervention for the family members of dementia patients and started raising awareness and organised several workshops and seminars for the general public free of cost (even though that they get no sponsorships for such programmes) from the day the Society was formed. It also hosted several training programmes for family members of the patients who require a bit more intensive training to deal with the patients. In fact, the Society’s intervention development won the best international prize for psycho socio intervention from the Alzheimer’s Disease International. This same intervention is now used to help treat patients family all over the world.
“Working with families of people with dementia gives me immense pleasure as I can see that my services are making a difference in their lives. I myself took care of my father who lived with this condition and through this initiative I can reach out to the people who need such help,” said Ms Lourdes Alvares, Counsellor with the Dementia Society of Goa and the Dennis Jarvis Trust.
Similarly Cynthia (name changed), whoes father was diagnosed to have Alzheimer’s disease years ago said, “At first we did not know what was wrong with daddy. His aggression was extremely difficult to handle. At times he was perfectly fine and we were wondering if he was doing it on purpose. After we got to understand Alzheimer’s disease through the Dementia Society of Goa (DSG), we were able to take care of him much better. Daddy still has Alzheimer’s disease but he also has us and we have the DSG to stand by us.
God bless their work.”
Dementia Society of Goa ensures that apart from the regular diagnostic which the patients have to get it from hospital, they look after the other non-pharmalogical management. It is in fact the key and most important part of the management of the dementia. Care is most important. “There are drugs to stabilise a person but till date there is no cure,” added Dr Dias. Goa is a unique state as the state has very good health facility as compared to other states in India, which means the longevity of a person increases and with age the dementia may be on the rise and it is expected to rise further.
The second unique feature in Goa is that many of the family members of the patients have migrated abroad. The problem is going to rise when there is no care given to these patients. “Many old age homes in Goa do not induct people in their homes who have dementia,” added Amit Dias.
This year the theme for awareness programme launched by the Dementia Society of Goa is “Remember Me”. The state government needs to have better policies for the long term care of the old and needy people who may be suffering from dementia. A concept to develop dementia friendly communities is also launched in Goa with a hope that if the patients cannot remember, the community remembers to take care of the patient instead of locking up and tieing the patient with a chain in a cold dark secluded room. It is an issue which needs urgent attention by one and all.
