In the USA, there is an Advisory Council on Alzheimer's Research, Care and Services. The Council is a diverse group of stakeholders from the Alzheimer's community as well as delegates of federal agencies that have initiated dementia programmes.
They advise the Secretary of Health and Human Services on the development of a national strategy to address Alzheimer's disease. The council was created by the National Alzheimer's Project Act (NAPA), which was signed into law early this year by President Obama.
In the USA, they know the magnitude of the disease and its expected effects on the economy. They know the numbers affected, they have projections for the future, they know exactly what resources to commit and what to plan for. Already they are fiercely debating on healthcare reform.
Only when so much attention is given can any difference made to the status quo, like in the Anna Hazare movement. In India, most of the statistics are both unreliable and outdated. Ask any NGO how many patients they have in their chapter cities and you will have your answer.
Most patients do not even get to a doctor at least not until well into the disease when treating in the early stages can be beneficial in slowing the progression of the disease. This is because the disease is not recognised early enough by the family members due to ignorance about the condition. Also doctors do not collate reports into a national database for such patients.
In Mumbai, when a person is diagnosed with dengue or malaria, the doctor has to inform the Corporation. The health dept of the corporation visits the patient’s home and asks a few questions and ticks a few boxes on a form. Some kind of data is being generated from this. There should be a similar tracking done for dementia patients also. A national database should be created and maintained by all stakeholders. Some reasons why this should be done are:
1. The mean age of the country will only increase in the passing years.
2. As of today, dementia is incurable, runs a long course even up to 20 years.
3. Medical support involves financial cost.
4. Care giving involves a social cost.
5. To help plan for facilities, nursing aides, respite centres, hospitals etc
6. Geographical plotting of cases could perhaps be interpreted in environmental terms.
7. Will aid in medical research for cure/treatment in these diseases.
This country is plagued by various ills from corruption to terrorism to malnutrition. The need for planning for dementia in old age is therefore on a lower scale of priority. Hence the need for a National Advisory Council to be constituted to advice the Health Ministry on policy decisions regarding this disease.