Doctors and caregivers speak on dementia and Alzheimer’s as well as ways to cope for caregivers

“We have been happily married for 35 years and she has stood by me through thick and thin. It is my duty to take care of her now,” says Retd. Wing Commander D.P. Sabharwal, who singlehandedly takes care of his wife who has been suffering from Alzheimer’s for the past five years.

D.P. Sabharwal’s wife falls under the rare “younger person’s case” as she was in her late 50’s when she was diagnosed with the illness. Mr. Sabharwal left his job as a corporate trainer in Chandigarh and moved permanently to Bangalore to take care of his wife. He is a picture of patience and strength, though, as he narrates the challenges he faces each day as a caregiver. “I have to be with her almost the whole day, and take a break for three hours when I go teach in an engineering college, leaving her in the care of a maid.” His job as a teacher has helped D.P. Sabharwal deal with his wife’s illness better.

Sabharwal, like other caregivers, has to deal with the emotional and mental pressures of handling an Alzheimer’s patient. For those who have to nurture a loved one afflicted by the illness, feelings of resentment and hopelessness are other issues they have to contend with.

Dr. Soumya Hegde, Consultant Geriatric Psychiatrist, Nightingales Centre for Ageing and Alzheimer’s (NCAA), says that Alzheimer’s accounts for 70 per cent of all dementia cases. Dr. Ratnavalli, consultant neurologist and head of department of neurology Manipal Hospital, Bangalore, agrees and says that every case of dementia is not Alzheimer’s. “There are more than 100 causes for dementia, five per cent of dementia cases occur due to nutritional deficiencies, particularly a lack of Vitamin B12. Besides, strokes, high cholesterol and diabetes and infections exacerbate the illness. At times, dementia sets in during the last stages of Parkinson’s disease. Administering high doses of and multiple anti-psychotic drugs for behavioural problems worsens the illness.”

The risk of suffering from Alzheimer’s, according to Dr. Hegde, increases with old age. “One in 20 of 65-year-olds are at risk of being afflicted by the illness, which increases to one in five among 85-year-olds.”

Dr. Hegde says that caregivers must speak to as many people for support and take occasional breaks. “One can take a break by sending their loved ones to day care centres and have all the family members take turns in looking after the patient.”

Although an Alzheimer’s and dementia patient suffers from memory loss, it doesn’t mean that they are completely unaware. “They may forget a loved one’s name and who he or she is, but they can sense he or she is somebody close to them,” says Dr. Hegde.

But there is hope, especially for those who have been diagnosed with dementia in the early stages. In her 15-year experience working with Alzheimer’s patients, Dr. Ratnavalli has observed that those patients who were kept active fared better than those who weren’t occupied. “Depression is a risk factor and also an early stage of dementia. It is advisable that the patients be kept occupied in doing household chores, and learn something new, such as gardening or cooking, and even better, a new language. Preventive measures can be taken by keeping diabetes and cholesterol under control and curbing the occurrence of infections and strokes, which leads to the rapid progression of the illness.”

Mrs. Sabharwal’s condition has been more or less stable over the last few years. D.P. Sabharwal says that there are certain facts a caregiver must accept. “It is natural to get angry with the repetitive patterns of a patient. I am a man of moderate temperament, but I used to lose my temper frequently with my wife. One has to develop patience and mental strength.”

However, there are very few day care centres in India. Swapna Kishore, whose mother passed away from dementia, says that according to the 2010 Indian Dementia Report, there are 3.7 million dementia patients with only 10 to 15 day care centres available. “The institutional modalities are negligible. Most care happens at home,” Swapna contends.

Swapna says that there’s not much awareness on dementia, and that the illness is hardly diagnosed, adding that care giving is a long journey. “Family members need to be aware that 10 years of intensive care is not always possible. Dividing roles and responsibilities among family members is essential. Also, many caregivers try to make their wards normal, which is a huge burden on the patient.”

To mark World Alzheimer’s Day today, NCAA has organised a cultural-cum-awareness programme that will help re-kindle old ties between caregivers and patients today at NCAA, Kasturinagar, from 9.30 a.m. to 1.30 pm. “It’s okay if old memories are gone, we can create new ones. The special programme we have organised involves activities such as pottery and playing games. These activities will help forge a deeper bond among caregivers and patients,” explains Dr. Hegde.

For caregivers who would want to know more on Alzheimer’s and dementia can visit dementiabangalore.in and dementia care notes.