He was a retired factory worker, living with his wife outside a small town in Wales, in the United Kingdom. Once outgoing and sociable, engaged in local activities including a community choir, he’d been jolted by a diagnosis of early dementia. A few months later, at 70, he wouldn’t leave the house alone, fearful that if he needed help, he couldn’t manage to use a cellphone to call his wife. He voided household chores he’d previously undertaken, such as doing laundry. When his frustrated wife tried to show him how to use the washer, he couldn’t remember her instructions. “He’d lost a lot of confidence,” said Linda Clare, a clinical psychologist at the University of Exeter. “He was actually capable, but he was frightened of making a mistake, getting it wrong.” At home Dr. Clare directed a recent trial of cognitive rehabilitation in England and Wales in which the patient was enrolled. Cognitive rehabilitation, which Dr. Clare has been researching for 20 years, evolved from methods used to help people with brain injuries. The practice brings occupational and other therapists into the homes of dementia patients to learn which everyday activities they’re struggling with and which abilities they want to preserve or improve upon. Organising a visit with a friend, perhaps. Keeping track of the day’s appointments and plans. Heating a prepared lunch without burning it. In weekly sessions over several months, the therapists devise individual strategies that can help, at least in the early and moderate stages of the disease. The therapists show patients how to compensate for memory problems and to practise new techniques. Cognitive rehab has its limitations. “We never suggest this can reverse the effects of dementia,” Dr. Clare said. It will not raise participants’ scores on tests of mental ability. But she and other European researchers have demonstrated that people with dementia can significantly improve their ability to do the tasks they’ve opted to tackle, their chosen priorities. Those improvements persist over months, perhaps up to a year, even as participants’ cognition declines in other ways. “They want to be enabled to manage their lives,” said Dr. Clare. “It gives hope that they can handle everyday challenges.”This approach may represent the future for the growing number of older adults around the world with dementia. Trials of drugs to prevent or treat dementia have failed over and over. Even if some future treatment demonstrated effectiveness, millions of people and their stressed family caregivers need help now.
Different approach “We can’t wait another 20 years for some magic pill,” says Laura Gitlin, dean of the College of Nursing and Health Professions at Drexel University, U.S. She has developed something called the Tailored Activity Program (T.A.P.), somewhat similar to cognitive rehab, which also brings occupational therapists into people’s homes. “We’re trying to lay the scientific basis for no pharmacological approaches,” Dr. Gitlin said. “These studies signal that they can have powerful effects on peoples’ lives.” In the United Kingdom, for instance, a government supported trial involving 475 people with early stage dementia found that after cognitive rehab, most participants attained their goals, while those in a control group did not, and they maintained improvement at three months and at nine months. (The study has not yet been published; Dr. Clare presented the results at a conference last year.) A smaller trial of cognitive rehab by Belgian researchers, recently published in the Journal of Geriatric Psychiatry and Neurology, found that patients with early Alzheimer’s disease remained better able to do their chosen activities after a year. “More and more, people will understand how many preserved abilities there are in dementia, and that will help change minds,” says Eric Salmon, director of the memory clinic at the University of Liege in Belgium and the senior author of that study.
In the United States, Dr. Gitlin’s T.A.P. programme includes more patients with serious cognitive loss than cognitive rehab does.
Bring in the experts
The philosopher Karl Popper argued that conspira c ey theories are often premised on the notion that vents are manipulated by sinister groups, shaped by a distrust of the notion of randomness and a yearning to explain phenomena in terms of an underlying or intentional order. From the birth of history, the death of famous people has provided a breeding ground for conspiracy theories. Clearly, the unfortunate and untimely passing away of Jayalalithaa has become a playing ground for such ‘theorists’. Astonishingly, more than a year after she died, two Tamil Nadu Ministers have called for a probe into her death by a special investigation team. Meanwhile, the Commission of Inquiry headed by Justice (retired) A. Arumughaswamy, constituted in September 2017 to probe her illness and death, is well into a third extension of its tenure. If it sometimes appears as if the Commission is shooting blindfolded in a dark room with blanks, that is because it is unclear if its principal focus is the issue of the “circumstances and situation leading to her hospitalisation”, “subsequent reatment” and “unfortunate demise” or a larger conspiracy into her death. Both issues could be related, in theory. But if the main task is to determine whether the former Chief Minister received adequate medical attention before she was admitted in hospital and during her 75day stay there, then this can only be settled by independent medical experts. The corporate hospital she was treated in has filed a petition before the Commission seeking the constitution of a medical board comprising experts in a range of specialities to examine the case records and the interventions made by its doctors. This is an eminently sensible suggestion, given the complex and debilitating matrix of conditions that Jayalalithaa suffered from. Only a complete understanding of her overall medical condition can result in a fair conclusion about the treatment she got. The importance of doing this is all the greater, given reports of critical errors in the recording of depositions of doctors before the Commission. One of them has gone as far as to say his application to correct errors has failed. The conspiracy angle has been given a new and perplexing lease of life with the Commission’s counsel accusing the hospital and the State’s Health Secretary of “conspiracy” and “collusion” in providing “inappropriate treatment”. It would be improper to suggest that the Arumughaswamy panel isconducting the probe in anything but a fair manner, but it is essential that it also gives the impression that it is doing just that. After all, there is no getting away from the fact that the setting up of an inquiry commission had a clear political motive — it was a condition that needed to be satisfied to unite the warring AIADMK factions. Chasing elusive conspiracies will not enhance the Commission’s image; taking the help of competent experts will.
The private member’s Bill aimed at protecting literary freedom from threats is welcome Literary freedom is taken for granted in democra c aies, but forces that threaten or undermine it are lways at work. Each age has to fight the battle afresh. In recent times, several attempts to get books withdrawn, pulped or sanitised of offending content have achieved full or partial success in India. Wendy Doniger’s The Hindus: An Alternative History was withdrawn from circulation, and A.K. Ramanujan’s essay ‘Three Hundred Ramayanas’ was dropped from a Delhi University syllabus. Tamil writer Perumal Murugan’s Madhorubagan was withdrawn by the author under mob pressure but resurrected by a Madras High Court verdict. Public order, national unity and social or religious harmony are the principles commonly invoked against the practice of literary freedom. Threats to free expression, especially artistic freedom, in our times mainly come from those claiming to espouse the interests of a particular religion or social group. It is in this context that Shashi Tharoor, Congress MP and writer, has introduced a private member’s Bill in the Lok Sabha seeking to protect freedom of literature. Its objective — that “authors must be guaranteed the freedom to express their work without fear of punitive action by the State or by sections of society” — commends itself to any society that upholds liberal values. It seeks the omission of three IPC sections, including 295A, in effect a nondenominational blasphemy law, as it targets deliberate or malicious acts to outrage religious feelings. Section 295A is a grossly misused section, often invoked in trivial ways to hound individuals, harass writers and curtail free expression. It deserves to be scrapped. Sections that relate to the sale of obscene books and uttering words that hurt religious feelings are also sought to be omitted. However, it is unclear why Section 153A, which punishes those who promote enmity between groups on grounds of religion, race or language, and Section 153B, which criminalises words and imputations prejudicial to national integration, do not draw Mr. Tharoor’s attention. In the process of proscribing a book, he proposes a tweak in the form of a 15 day prohibition. Thereafter, the onus should be on the State government to approach the High Court to seek a permanent ban. It favours the scrapping of the provision in the Customs Act to ban the import of books, but makes a public order exception. It wants to limit the bar on obscenity in the Information Technology Act to child pornography. Private Bills rarely become law, but they are useful in highlighting gaps in the body of law. Seen in this light, Mr. Tharoor’s initiative is most welcome as a step towards removing or diluting penal provisions that inhibit literary freedom.