In the middle of lovemaking, a man suddenly gets distracted by a lizard on the wall. In another scene, he can’t find an important office file because he’s mistakenly placed it in the refrigerator. This isn’t quite French new wave cinema: These are snapshots from the life of an Alzheimer’s patient, deftly captured in the National Award-winning Malayalam film Thanmathra (2005). The film shows how deeply Alzheimer’s has seeped into the public consciousness in Kerala. “For only by making it a part of our everyday lives, talking about it, engaging with it through popular culture can we de-stigmatize the disease,” says Jacob Roy Kuriakose, national chairman and founder of the Alzheimer’s and Related Disorders Society of India (Ardsi), which collaborated on the film.
First identified in 1906 by German psychiatrist Alois Alzheimer, this degenerative disease of the brain is incurable and terminal, and the most common form of dementia in the 60-plus population. Lifestyle plays a major role in Alzheimer’s, which starts innocuously with minor memory lapses. With time it affects the power of reasoning, memory, and eventually, physical movement.
The physical aspect of managing such a patient is hard enough, says Bangalore-based travel consultant Shree Setlur— along with her 19-year-old son, she takes turns to watch her 85-year-old father at night—but it is harder to face the emotional repercussions of seeing a hale and hearty individual degenerate into a confused, sometimes adamant, sometimes agitated, child. “Sometimes he recognizes us (his children) but most often he doesn’t. My mother is his wife sometimes, but most often, to him, she’s his mother,” she says. “We have to be careful of what we’re watching on TV because to him there is no difference between reality and fiction,” says Setlur, who has been a caregiver since 2005.
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The real support
Bangalore-based caregiver Swapna Kishore, who also blogs about her experiences (www.swapnawrites.com), recalls the initial stages of being a caregiver as “overwhelming” because while there is plenty of information on the disease, there is nothing to prepare you for how it can affect the patient and the caregiver. “Your patient will exhibit behavioural problems, such as asking a question repeatedly, or doing something dangerous despite being told not to. They will also accuse you of not feeding them or not taking care of them and they will tell your neighbours about it. People end up believing those accusations and might even isolate you for mistreating your loved one,” she says.
But joining the Bangalore support group one and a half years ago made things a lot easier for Kishore. “You share problems and solutions. At meetings we talk about anything, ranging from how to manage the patient to how to manage your own stress,” she adds
Bangalore’s Ardsi chapter, which now trains Ardsi members from other cities, has developed its training module from Alzheimer’s Australia, with one critical difference: It bases its work on a family-based support system. “Unlike in the West, in India a lot more importance is placed on family ties. This could often manifest negatively in the form of guilt—guilt about seeking outside help, guilt about admitting a family member to a care facility. We’re trying to take the guilt out of the picture, and focus instead on the positive,” says Priyamvada Muddapur, programme manager, Nightingales Dementia Care, Bangalore.
One complication that prevents timely diagnosis and intervention is the popular idea of dementia and senility as a normal part of ageing, which is totally off the mark, says Nilanjana Maulik, joint secretary general, Ardsi, and executive board member of the Kolkata chapter. “Many people live into their 90s and even 100s without any symptoms of dementia,” she says. The Kolkata chapter of Ardsi was founded in 1999 by Shefali Chaudhuri, whose daughter Deepika Basu was struck with the disease at just 52. Now in her early 90s herself, Chaudhuri continues to be her daughter’s primary caregiver.
The awareness advantage
In Kerala, the number of cases being diagnosed has gone up considerably—a sign that there is growing awareness about the disease. This level of awareness has only been reached by a sustained support group movement through Ardsi. The Kochi chapter provides a range of services to take care of the physical, emotional and psychological needs of patients and their caregivers, including round-the-clock care facilities.
Bangalore too is focusing on diagnosis. Ardsi, Bangalore, has set up an online diagnosis facility on the website (www.dementiabangalore.com). “This is helpful in a country where they don’t want to talk about the disease, so they ignore it and don’t seek help. Family members can use the questionnaire to determine if their loved one is suffering from Alzheimer’s or not,” says S. Premkumar Raja, secretary, Ardsi, Bangalore. Supported by the Nightingales Medical Trust, Ardsi has also set up a 70-bed facility for Alzheimer’s patients.
At the Kolkata chapter, besides day care there’s also a community support programme for people in the early stages of dementia, those who are still able to continue their daily activities with a small safety net—a trained companion is sent to their homes to engage them in leisure activities and motivate them to stay social and outgoing.
Most importantly, both Bangalore and Kolkata have, like Kochi, monthly support group meetings—not for the sufferer, but for the caregiver. “Family carers get exhausted and fall prone to developing psychological disorders like depression. As a result, (they) need support and respite to recharge their batteries and continue in their caring role while managing other spheres of life,” says Dr Maulik.
And trained professional help, even if available, is not easily accessible. For example, Ardsi trains professional carers and tries to match them with families. But there is a huge shortage of carers and a long waiting list. “Most of the trained carers prefer other caregiving jobs as caring for a person with dementia requires lots more than just brains and the will to earn a living,” says Dr Maulik.
In contrast to cities such as Kochi, Hyderabad, Chennai, Bangalore and Kolkata, the situation in Delhi and Mumbai makes for poor reading.
Mumbai is shockingly ill-equipped to deal with patients. There are no regular meetings, and no day-care facility according to Shirin Barodawala, neuro-pathologist for Ardsi, Mumbai. Delhi is only marginally better. There is no day-care facility not only in the Capital but in all of north India, says V.K. Khanna, executive director, Ardsi, Delhi. But yes, Delhi does have monthly support group meetings and regular talks are held at schools and colleges, and for resident welfare associations, to spread awareness .
At the end of the day, Kishore says it is a solitary journey—“but having these forms of support...makes you feel like you’re finally speaking a language that everyone understands”.
Ardsi help in your city
Day-care community programme, home-based care, memory clinic, helpline, round-the-clock care facility, caregiver training and monthly support group meetings. Contact Mathew Abraham, president and consultant neurologist, at 2808088
Day care, home care, short-term and long-term residential care, dementia risk-prevention programme, training for caregivers, a small research unit, fitness and rehabilitation centre as well as training to caregivers.
Contact S. Premkumar Raja, secretary, at 23548444; www.dementiabangalore.com
Monthly memory screening clinic, day care, home-care support, community-based support programme for those in the early stages of dementia, caregiver training (both family and professional caregivers), counselling and support group meetings for family caregivers, awareness programmes; online presence being developed
Contact Nilanjana Maulik, executive board member and director, dementia services, at 9331039839 or call 24054959/24755827; www.ardsikolkata.org
Contact C.G. Thomas, president, at 23513253/9820582184 or email at firstname.lastname@example.org
Monthly support group meetings, awareness talks, helpline.
Contact Nirmala M. Narula, president, and V.K. Khanna, executive director, at 26922940
Contact R. Sathianathen, secretary, at 9841019910 or email at email@example.com
Contact Suvarna Alladi, president, at 66103413 or email at firstname.lastname@example.org
Varuni Khosla contributed to this story.