Sitalakshmy Amma was oblivious to the fact that she had not had a bath for several days. She lay on a bed, her vacant eyes staring at nothing. Her husband and children did not hospitalise her or seek treatment. Living in a state of denial, her family refused to accept the fact that the septuagenarian had Alzheimer’s Disease, which had robbed her of her vivacity and sense of hygiene along with a major chunk of her memory.
The stigma associated with the illness is one of the many misconceptions Sreekanth P. Krishnan hopes to reduce, if not erase completely, through awareness programmes on Alzheimer’s Disease and its symptoms. Honorary Secretary of the local chapter of Alzheimer’s & Related Disorders Society of India (ARDSI), which runs Snehasadanam, a centre at Thiruvallam that cares for those with Alzheimer’s Disease (AD), Sreekanth has been tirelessly working and campaigning for a community-based support and welfare system for families looking after a patient with AD.
“This disease robs a person of his/her identify. Our entire life is based on our identity and when that is lost, it becomes harrowing for caregivers and the patients themselves,” says P.S. Mathuranath, additional professor at the Sree Chitra Thirunal Institute of Medical Sciences and Technology (SCTIMST).
Agreeing with him Sreekanth says: “It is emotionally and physically traumatising for the caregiver when a family member is diagnosed with AD. These patients require 24x7 care and cannot be left alone even for a minute. In the age of nuclear families and in an age when both spouses work outside the home, looking after such patients at home becomes a demanding task .”
Many families were desperately searching for a day care centre and it was in response to that need that SCTIMST, in association with a day care home for senior citizens, began a day care centre called Sayoojyam near Nalanchira. When that became insufficient to cater to the needs of the patients and their caretakers, ARDSI, again with the cooperation of doctors at SCTIMST, set up Snehasadanam. “My father was the first patient there and soon he was joined by two other patients from Kunnamkulam in Thrissur. We only take in patients who are referred to by the SCTIMST and we are particular that the primary caregiver (usually some one who brings the patient to the home) visits the patient every two weeks or so. This is to prevent unscrupulous family members from ‘dumping’ patients on us,” explains Sreekanth.
Lavishing praise on the 10 caretakers at the home, he says that keeping the elderly patients neat is a Herculean task that calls for patience and compassion. Agreeing with him Jose K., social worker at the centre, adds: “Each patient has his or her idiosyncrasies. Many of them have mood swings and sleep disorders while some can turn aggressive. We try and keep them occupied during the day with games, music, art and various activities. While two or three of the women enjoy listening to music, quite a few are happy to sit and watch, their thoughts elsewhere,” says Jose.
Sreekanth adds that there are several legal issues that also need to be sorted out by the Government to come up with a policy that covers the medical, financial, legal, and psychological aspects of patients with AD.
As caregivers and doctors battle for a government policy for victims of AD, Sitalakshmy Amma and many more like her are blissfully unaware of the efforts to help them lead a dignified life. Dressed in a gown, hair combed neatly, she watches passersby and the world go by from her favourite place on the verandah in Snehasadanam.
(The name of the patient has been changed )
When memory fails
A Memory Clinic at the SCIMST, which has been functioning there for 12 years, is the tertiary referral centre in the city where patients are examined for cognitive neurological illnesses. A team consisting of neurologists, psychiatrists, psychologists, speech therapists and a medical social worker at the memory clinic help patients and caregivers in treating and caring for patients with AD.
“First is acceptance. Most families find it difficult to come to terms with the fact that their relative has AD. Then, we have to take a decision whether the doctor should tell the patient that he has AD or should he tell the caregivers only? In most cases, we tell the families. If the patient has some semblance of memory left in him/her, it is a crushing revelation. There is no cure and the condition can only worsen,” says Dr. Mathuranath.
Caregivers are given counselling and help to deal with the situation and the patient. Dr. Mathuranath says he is available 24x7 for his patients’ families. “Most of them call when they reached a crisis and need someone to listen and advice to tackle a crisis. For instance, many patients go missing and families need advice on what to do next. Some become aggressive and some patients refuse to take a bath or clean themselves…,” he says.
He says that once a patient of his forgot his signature and started writing in a different way. His children had a difficult time as the bank refused to accept anything signed by the patient. Finally, his family had gone through several procedures to get the bank to accept documents with the thumb impression of the patient.
Dr. Mathuranath says that keeping oneself intellectually and mentally active is one of the best ways to delay the onset of AD. “Reading, writing, social interactions and, recent research shows, even physical activity, can help delay the symptoms of AD,” he adds.
For an inclusive world
Dr. Jacob Roy, chairman of the Alzheimer’s Disease International, a federation of 76 national Alzheimer’s associations, is the first Indian in that post. In an e-mail interview, Dr. Roy says that is important to be ‘inclusive’. “Don’t exclude them from the family. Often people tend to avoid people with dementia from the mainstream. It is important to accept such people and have more dementia-friendly services in place.” Replying to a question about his pioneering efforts in starting the ARDSI, he recalls: “It was a difficult journey. There was hardly any awareness and each step was difficult. But now people don’t stare in disbelief. Many people know there are a number of people suffering from this tragic disease. It is very important for families to have a good understanding about the complexities of this condition and prepare themselves physically, mentally, socially, legally and financially.”
This year, the entire month of September is being observed as ‘World Alzheimer’s Month’. The theme is ‘Living Together’. ‘ Memory walk’ from Kanakakunnu Palace ground to Kowdiar Junction will be flagged off at 7.30 a.m. in the presence of Dr. Roy. The Indian release of the world report on dementia is at Mascot Hotel today.
