Imagine an elderly grandmother who is repeatedly forgetting things. Her family dismisses it just as a sign of her getting old. But her memory is deteriorating and it is continuously being attributed to ageing. Then one day she wakes up and cannot recall where and who she is, much less recognise her loved ones. As things move quickly, the doctor comes in the picture, and the elderly grandmother is eventually diagnosed with a case of Alzheimer's dementia.
So, what is this Alzheimer’s dementia? This is a disease that affects the brain and harms memory. It may start as simple forgetfulness, and gradually transform a patient into a whole new person who cannot remember their previous life. They cannot even perform their daily activities without assistance.
Apart from a deficiency in memory, Alzheimer's patients display symptoms like having trouble in solving simple problems; failing to perform general activities (for example, showering, changing clothes and washing); withdrawing from family, friends and society; facing difficulty in making communications; and having confusion about their surroundings. With such symptoms, they risk being lost when they are outside alone. And this is just the tip of the iceberg. So caregivers have to play a crucial role in helping Alzheimer's patients go through life as this disease takes a heavy toll on them.
Cause of Alzheimer's disease
Truth be told, a definitive cause for Alzheimer’s disease is yet to be found. Some say it is because of the accumulation of abnormal proteins in the brain, called Amyloid Plaques. They interfere with the functioning of the brain regions involved with memory and cognition. But this is only one of the numerous theories proposed to explain Alzheimer’s disease. But what we do know is that there is a definite relationship with ageing.
Women are more likely to be victims
Over the age of 65, one out of every six women and one out of every eleven men, run the risk of developing this condition. Of all the cases of dementia, 65 per cent are women which suggest that women are most vulnerable. But if they are smokers, there is a 70 per cent greater chance of developing Alzheimer's, particularly at an earlier age. For people with obesity, the risk is 40 per cent higher than the general population.
World Health Organization (WHO) estimates that there are 50 million cases of dementia worldwide. And while it is common in older people, it is not a physiological process. Every year, 10 million new patients are added, and one person is diagnosed with dementia every three seconds. Alzheimer’s disease accounts for most cases (60 per cent-70 per cent). It is also only one of the top ten causes of death for which no specific genetic cause has been identified.
Alzheimer's dementia in Bangladesh
WHO suggests that the problem with dementia is more prevalent in low and middle-income countries, home to 62 per cent of such patients worldwide. When we look at Bangladesh, we do not really have enough data. Our elderly population is eight per cent of the total, approximately 12 million. This is projected to increase to 16 per cent of the total population by 2050, which means a good chunk of the people will be elderly. It is not inconceivable to think there might be at least several thousands of people who carry this serious disease in the country.
According to a 2018 report by Alzheimer's Society of Bangladesh, about half a million dementia patients in the country are expected to increase to more than 2.0 million by 2050. According to a 2016 Global Burden of Disease Study published in acclaimed Journal Lancet (2019), Alzheimer's dementia has a population prevalence of 3.3 per cent, causing around 16,000 deaths in 2016. The disease itself is not fatal, but it contributes to the fatal outcome by crippling the patients so severely that he/she could no longer take care of everyday life and become vulnerable to death from other causes. Furthermore, there is also a significant impact on the economy. Treatment cost of dementia patients, both direct and indirect, amount to between 320-700 USD per patient per month. This includes the loss of productivity of a patient and the expenses for his/her care.
So even though we do not exactly understand the magnitude of Alzheimer's disease and dementia yet, it is evident that the importance of managing the issue cannot be overstated. In developed countries, there is an institutionalised system explicitly dedicated to elderly people and Alzheimer's patients. In contrast, our elderly support system is still traditional family-based and of course insufficient for the care of Alzheimer's patients. These patients require constant care, and their fragile mental state needs sensitive handling. Therefore, the caregivers require proper training and motivation, and the family and friends of the patients need to learn how to deal with the issue. This is more complex than any other disease because, in Alzheimer's disease, caregivers and the family need to ensure twenty-four-hour daily care, including administering medication, feeding, showering, washing, cleaning and everything.
There is no cure for the condition yet. It will progress irreversibly, and the medicines could only slow it down a bit. So essentially, the patients will need to be taken care of for the rest of their lives. This puts the family and friends on a lot of stress if there is no institutional support. It may sound harsh, but in today's world, everyone is busy. So even though a loved one is suffering, it might not be possible to ensure constant care round the clock. And people who are trained in giving care for Alzheimer's patients might get irritated or angry with them at some point.
So, a proper care system and a support structure for dementia patients are necessary. These patients are often stigmatised in society and may be branded as fools for not remembering things. And when it comes to treatment, it is even more difficult to find a specialised institute for them. There is a National Institute of Mental Health and Hospital (NIMH) at Sher-E-Bangla Nagar, Dhaka. But taking these patients there adds even more stigma to it as they are branded as ‘mental’, or ‘insane’ because of lack of social understanding of mental health issues. Both the government and private hospitals have neurology departments which usually deal with dementia patients, but again they are not yet structured enough to provide the specialised support Alzheimer’s patients need.
In the end, it is actually up to caregivers to ensure the proper management of these patients. But in Bangladesh, the awareness level about dementia is so low that people often consider it as a normal ageing thing, which it is not. Therefore, they do not seek treatment for their loved ones until the condition worsens too much. Even when the diagnosis is made, the caregiver is at a loss because they do not know how to deal with it. It is not only in Bangladesh but also elsewhere in the world. Globally, two out of every three people believe there is little awareness about dementia in their respective countries.
But fortunately, a number of NGOs are working to build and advance awareness of dementia, and offer assistance to caregivers to help them understand their responsibilities. These NGOs have established a platform called "Dementia Action Alliance of Bangladesh", with Alzheimer's Disease International's support. An organisation called Alzheimer Society of Bangladesh (ASB) is working to better the quality of life of dementia patients. One of their main objectives is to generate awareness and fight the social stigma surrounding dementia. But what we lack are patient advocacy groups and patient support groups on a national scale, which may help caregivers and patients get in touch with each other and help share their learning and experience. This is one of the most important aspects of Alzheimer's management. There may be some small groups, often sponsored by pharmaceutical companies, but they are not extensive enough.
So it's high time we raised awareness about this terrible scourge and make people understand what is needed to support those suffering from Alzheimer's dementia. And being their loved ones, we cannot afford to let them die from it – forgetting themselves.
Imtiaz Ahmed is a practising doctor. He can be reached at [email protected]