Pramila Bajracharya was studying in the eighth grade when she saw her grandmother losing her memory and suffering from behavioural abnormalities. Because she could not remember anything including her own family members, her behaviour turned problematic for the rest of the family.
“Then, we resorted to locking our grandmother in one room,” Bajracharya says, “But, she again began verbally abusing us. She used to keep screaming, shouting, wandering, hallucinating, involving in improper behaviour, and later also lost her bowel control.”
The family thought the old lady went crazy and felt embarrassed due to those behaviours. A few years later, she passed away, giving solace to the family.
But, years later, Bajracharaya was hit hard by the realisation, “My grandmother did not die of madness, but due to Alzheimer’s. If only we had known about this disease, we would have taken care of her differently.”
The number of elderly people with Alzheimer’s in Nepal is rising. However, due to a lack of a dedicated policy from the government of Nepal and a lack of understanding, they are having to live along with this disease, undiagnosed and untreated, although the awareness is increasing very recently, complain experts and stakeholders.
The gravity of the problem
As per Alzheimer’s Disease International (Dementia in the Asia Pacific Region), the estimated number of people with dementia in Nepal is 78,000 in 2015, and this number is expected to reach 134,000 by 2030 and 285,000 by 2050.
But, only around 300 cases of Alzheimer’s in Nepal are reported in the annual report of the Ministry of Health, meaning many patients are undiagnosed.
With the urban lifestyle expanding among the population, there is a growing need for specialised elderly medical care, yet there are only eight geriatric doctors (specialised in the elderly care) in Nepal, informs Prakash Gautam, the director of Ageing Nepal, an NGO working for the elderly. Among them too, only three are practising in Nepal and none working as a government doctor.
Gautam says this is one strong example to prove why Alzheimer’s in Nepal remains a neglected issue.
“There is a lack of awareness about Alzheimer’s in public, therefore people won’t go to clinics even if a geriatric doctor starts the one. The level of awareness regarding Alzheimer’s in Nepal is so poor that even many health personnel do not have any idea about it,” he laments.
Corroborating Gautam’s statement, Dr Ramesh Kandel, a geriatrician and dementia specialist of the Kist Hospital, adds, “Individuals living in urban areas, who are aware of this disease usually make their elders seek medical support in the primary stage, while people from rural areas usually bring the patients when the disease has become severe.”
Alzheimer’s in Nepal is generally taken as a normal process of ageing, which is not true, informs Kandel. Some other people label the elderly people suffering from Alzheimer’s in Nepal as crazy and often disregard the problem as old-age madness, according to Bajracharya, who has started Hope Hermitage Nepal, an NGO that advocates for the rights of the elderly people. The organisation has also been running a care home for Alzheimer’s patients.
The government efforts about addressing the problem are nominal. It has neither created permanent positions for specialist doctors and nurses nor given training to the existing workforce, complains Kandel. Hence, all the diagnosis and treatment facilities for Alzheimer’s in Nepal are limited, city-centric and expensive.
Yet, the government of Nepal made a provision to provide a subsidy worth Rs 100,000 for the medical treatment of Alzheimer’s patients. Dr Nidesh Sapkota, the head of psychiatry at Patan Academy of Health Sciences and the president of Alzheimer’s and Related Dementia Society Nepal (ARDSN), praises this effort.
However, the process is so complex that many people have not taken advantage of this support, believe other stakeholders. Further, only a few hospitals have been assigned to provide this facility and many of them are based in Kathmandu and other cities. In addition, the amount is also minimal compared to the cost required for treatment and care of Alzheimer’s patients, according to them.
So, Kandel suggests, “Health insurance policies that cover the cost of long-life treatment and medication should be launched by the government.”
Miles to go before…
On top of that, currently, the main concern is that there are not any favourable circumstances so that a patient suffering from Alzheimer’s in Nepal can get a formal diagnosis. It is because the one suffering cannot go to the hospitals on their own and his/her family members either dismiss its symptoms due to the reason mentioned above, shares Gautam.
He continues, “Also, if someone is taken to a hospital, there is limited human resources and infrastructures. It is high time the government worked on producing sufficient trained human resources for treating this disease. Further, there should be permanent positions of geriatric doctors at government hospitals.”
Furthermore, Bajracharya, Kandel and Gautam recommend hospitals operate finely-equipped geriatric wards with appropriate treatment systems as the geriatric health system is very poor in Nepal. There are wards dedicated to the elderly at some hospitals, but they do not have specialised medical professionals and are not well equipped, complain all three of them.
Along with this, the government should also work on sensitising people regarding Alzheimer’s in Nepal.
“It can be treated, but cannot be completely cured. Therefore, it is vital to provide the patients with early diagnosis and early treatment and proper care,” Kandel informs, “ If done accordingly, an Alzheimer’s patient can survive for about 10-15 years. As the social and economic burden of this disease is huge, timely intervention is a must.”
In addition, Sapkota views the government should prioritise this disease as a major health concern and provide similar facilities and support that has been provided to kidney failure and cancer patients.
Moreover, the focus should be given to preventing it and the government should bring policies and programmes accordingly, according to Sapkota.
Adding to this, Bajracharya, who has been taking care of 21 elderly people who have Alzheimer’s in Nepal, says there is a need to operate geriatric hospitals and daycare centres at the local level. Moreover, advocacy and awareness is still a must.