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Care, not pills, are crucial for managing alzheimer's
With an estimated 3.7 million Indians diagnosed with dementia — a progressive brain disorder which has no cure — and a rapidly increasing ageing population , currently estimated at about 100 million, our country faces a tough task in providing health care to this section that requires specialised care with no real strategy or system in place. At the recently concluded 16th National Conference of the Alzheimer’s and Related Disorders Society of India (ARDSI) in Pune, Dr Nori Graham delivered the opening address ‘A world tour of dementia care: what does the future hold?’ Dr Graham, an honorary fellow of the Royal College of Psychiatrists and emeritus consultant in the psychiatry of old age at the Royal Free Hospital, has been involved with the causes of the elderly for almost three decades now, and is a former chairman of Alzheimer’s Disease International.
Two years ago the United Kingdom came out with a National Dementia Strategy. We're trying to do the same here in India. Seeing how difficult it is to get governments to act, how did you manage?
It took about two years to put together an action plan in the UK. It was a consultative process, using persons with dementia (PwD) and their families, and professionals as well as people from the Alzheimer's Association and other NGOs to come together to discuss the issues. The National Dementia Strategy emphasises early diagnosis as being really important, but you really can't have early diagnosis unless people come forward and go to the doctor. Television has played a big part, with people coming forward and talking about their experiences. The first brave person to come forward was Ronald Reagan. You need to have people like that to come forward in every country. There are relatively very few psychiatrists and neurologists in India. It's got to be the primary care system that deals with the whole thing, supported by people to whom you can refer more complicated problems. It's giving simple guidelines, which is really what the WHO has just done to primary care doctors and other people working at that level, like nurses. The implementation has to be from the bottom up. In a village you need everyone to understand. If one could understand that this not normal ageing, and a little bit about the course of the disease, and some simple information about how to deal with problems of the activities of daily living. This country really could, and does, manage PwD in a very human, family way. It's the care you have for people that makes all the difference to PwD.
There is still a lot of stigma associated with dementia.
People have always looked at mental illness across cultures like this. I think that any person seen to behaving in an odd way is looked at with fear and suspicion, and people with brain diseases often do behave rather oddly, and people don't know how to react. PwD are hardly a problem, but when they start doing odd things, people feel ashamed.
In your lecture you mentioned that 'pills make very little difference' to people with dementia. Here at the
conference, there is an overwhelming presence of the pharma industry. Why are we persisting with medication?
You have obviously understood where I am coming from as far as the pills are concerned. We are somewhat driven by the drug companies, and they have an almost unconscious effect on our lives as doctors, and with dementia there is a real problem: we have nothing that cures. It is true that a few people, probably 30-40 per cent of the people in the mild to moderate stages of dementia, do seem to react favourably, in terms of functioning, for a while to the tablets that we have at the moment. But we don't know who is going to respond favourably. So, what doctors do is to give it to everybody in the mild to moderate stages, and some of those people respond, for a while. People cling, they're a ray of hope, these tablets, and once they're on, it's very difficult to get the patient off the tablet even though they're quite obviously deteriorating. Care is really the most important thing but people don't really want to sit and talk about it.
Recently the Equality and Human Rights Care Commission in the UK came out with a report documenting cases of abuse of patients in their homes by care-givers.
It is a scandal. Everyone talks about tablets and medicines, but at the same time we pay our caregivers shameful, small amounts of money. We offer very little training. People need role models of how to care, and how to look after people in a reasonable way, and I don't think we're good enough in selecting those role models. We are, at some places, and it's terrific. Care at home has always been a problem. How do you offer domiciliary care to families at home and know what is going on? You can't monitor what's going on behind doors. If you've a got a person with dementia on their own, or an elder person without dementia, they're afraid to complain, so people get away with not caring properly. But I'm involved in all sorts of things to do with the elderly, and still hope to change the world. Of those, one is the Centre for Social Justice, which is a policy unit set-up by Ian Duncan Smith, a former Conservative Party leader, looking at different groups of disadvantaged people. And in the last two years they decided to look at low-income, socially disadvantaged elder people. We came out with a couple of reports, and hopefully, as a result of our recommendations, we've set up, with the Department of Works and Pensions from the government, together with Age UK, which is a large older persons charity, an alliance of older people's organisations called the Age Action Alliance.
The problem of the elderly is growing globally. How are we placed presently?
It takes time, there's no doubt about that. If you consider the Alzheimer's Society was founded in 1979, and we get a National Dementia Strategy in 2009, that's thirty years. I'm not saying that it's going to take as long. It's obviously going to be faster, because one does learn, but I think there is a change. The Dementia India Report is out and at least the Indian government has begun to respond, and that's taken 19 years. I feel if you can do it in India, you can do it anywhere. The WHO has woken up too and will bring out a dementia report next year. The UN recently met on non-communicable diseases, and there was a fight for mental illnesses and AD and other dementia to be included. I never thought they'd win, but they did. And we've seen in Alzheimer's Associations around the world that there's no success without a committed person driving it.
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