When Sushma Aryal, 67, a resident of Baneshwar in Kathmandu didn’t return for over two hours from a trip to the local grocery store, her son Rajesh Aryal went out looking for her and found her wandering listlessly on the road as cars whizzed by, blaring their horns to an oblivious old lady. When he caught up with her, she showed no signs of recognition in her face and had to be dragged back home. This incident was the fifth one in the past six months.
According to World Alzheimer Report, there are approximately 35 million people in the world with dementia, and the number is estimated to reach 70 million by 2020.
Alzheimer’s is the most common form of dementia or loss of memory that accounts for 50-60% of dementia cases. Though it is not a part of normal aging, the greatest risk factor is increasing age, and the majority of people with Alzheimer’s are those over the age of 65.
“We were in England some months ago for my brother’s wedding and the doctor there diagnosed her with Alzheimer’s,” says Rajesh, adding that the symptoms have worsened in the last few weeks and that she gets more confused and lost than ever before, sometimes even failing to find the right words to answer and mumbling incoherent words in reply.
Alzheimer’s is a progressive disease where the symptoms gradually worsen over time. The disease robs individuals of their memory, cognitive functioning, and eventually renders the person completely dependent upon others to navigate even the simplest of tasks such as eating and getting dressed.
Though memory loss in the early stages is mild, in the later stages, it becomes severe and reaches a point where the individuals lose their ability to communicate and respond to their surroundings.
Bina Dangol, 73, previously a science teacher, has been living with Alzheimer’s for the past six years. She had been living alone in Hetauda, a town in Makawanpur district in southern Nepal, but her son, Anubhav, convinced her to move to Kathmandu and live with him and his wife when she showed signs of memory loss. That was nine years ago and the memory loss was limited to forgetting names and incidents.
Today, she doesn’t remember her granddaughter, and her son has to occasionally even remind her of who he is. She’s fond of Anita, her daughter-in-law who gets her dressed, feeds her and takes her to the bathroom.
“I have to tell her how to bathe. I show her the shampoo, soap and scrubber and instruct her on what she needs to do and then wait outside the bathroom till she’s done. It’s like taking care of a small child. A newborn, sometimes,” says Anita who follows Bina like a shadow.
People over the age of 65 are more likely to suffer from Alzheimer’s. However, it can affect people in their 40s and 50s as well. About one in 1,000 below the age of 65 develops dementia. Alzheimer’s is slowly affecting the entire world and has become a major global health issue, for the elderly population in particular.
The condition has not been given much importance in Nepal, perhaps due to the lack of awareness among the general public and health workers alike. As the census of 2011 shows that the 60+ population of Nepal is increasing at a rate of more than double the rate of increase in the total population, Alzheimer’s has become a health scare that can and should no longer be put on the backburner.
Alzheimer and Related Dementia Society, Nepal (ARDS) was established this year to bring to attention the need to address this sensitive issue. ARDS also runs a dementia helpline.
“By the number of family members calling in for help, we can assess that there are many, many living with Alzheimer’s nationwide,” says Dr. Nidesh Sapkota, General Secretary of the ARDS.
“Since there is no known cure for the disorder, early detection and counseling for both the patient and their caretakers are crucial,” adds Dr. Sapkota, mentioning that therapies along with drugs and lifestyle changes, like keeping the mind sharp and stimulated, can delay the progression of the disease, and the patient can still lead healthy life even after the onset of the disease.
Anita spends hours poring over books and searching the Internet for articles on the disease. But she believes she was a wee bit late in getting informed. Taking care of Bina has been immensely taxing, both physically and mentally, and the fact that Bina’s only going to get worse has made her family’s life a graveyard of hope.
“I just wish there had been some level of general awareness about the condition and we could’ve handled it better. Maybe she wouldn’t have reached this stage so early,” says Anita, adding that it is painful for her husband to witness his mother’s deteriorating condition.
Awareness about this irreversible disorder is of paramount importance. It will help both the patient and their family to better understand the disease and the extent to which it can progress. The disease comes with a psychological price tag besides the obvious health care expense and awareness to some extent, which can help cope with the ordeal of watching their loved ones being snuffed of their essence.
Kabi Raj Khanal, vice spokesperson at Ministry of Health and Population, agrees that the disease in itself is alarming and though there is no cure for it, as such, it is imperative to make the public aware about this degenerative disorder.
“Awareness will lead to early detection and hence early intervention will be possible, and that can bridge the treatment gap to a certain extent,” says Khanal, adding that the government is looking into the matter and will take up the issue of creating awareness seriously in the coming year.
Even in developed countries like the United States, Alzheimer’s falls in the top ten leading causes of death every year. After a promising new vaccine resulted in inflammation of the brain and spinal cord, the research for cure was abandoned. Researchers are, however, looking into the possibility of the disease being caused by a protein buildup in the brain and are investigating ways to interrupt that process. Also experiments to better scan the brain and detect signs and symptoms of the disease are being carried out; so optimism about a possible cure still exists.
Till then, awareness about Alzheimer’s will help in reducing the stigma associated with the condition and make our community better equipped to deal with it when someone shows signs of the slow, inexorable slide into the brain scouring disease called Alzheimer’s.
The writer can be reached at email@example.com