September is considered World Alzheimer's Month. In 1906, German doctor Dr. Alias Alzheimer was the first to study Alzheimer's disease. The disease was named in his honour. This day aims to raise awareness about Alzheimer's disease and strengthen efforts to manage the health problems of patients.
Although science has advanced a lot, there is still ignorance in society about dementia. Even when the disease is recognized, it is often difficult to accept it. Ignorance and carelessness in patient care can cause harm. Dr. Robert Mathew, former Professor of Neurology at Alappuzha Medical College and National President of Alzheimer's and Related Disorders Society of India (ARDSI), explains what Alzheimer's disease is, what to look for in patient care, and the risk of the disease.
What is Alzheimer's disease? What are the symptoms?
Alzheimer's is a brain-related disease that affects the elderly. Although forgetfulness is the main symptom, other behavioural disorders may also occur. More than 50 diseases can show symptoms of dementia. Most of these are incurable. If you take 100 people with dementia, only 10 will have a treatable condition. Dementia can last for years and a person can live with it for 5 to 15 years.
After the first three to four years, we see behavioural problems, in addition to forgetfulness. In some cases, there may be behaviours similar to depression. Therefore, it is difficult to take care of them. At some point, they will need help with everything. They will refuse to eat and may need to be fed. They would refuse to wear clothes, won't bathe, and ignore personal hygiene. They would have no control when it comes to passing stools and urine. They will try to deal with it after it happens. They can harm people unintentionally. They could touch electric wires or simply walk out of their homes without informing anyone. There would be many differences in the way they speak. They wouldn’t really understand what we are saying. And wouldn’t be able to properly articulate their feelings. A series of problems such as excessive anger, tendency to hurt, and depression could follow one after the other. Loss of sense of place and time, tendency to leave home saying it is not one's own house, get up at midnight, poop and urinate in bed, wake up everyone in the house and shout without any reason. Or they may hallucinate that they are surrounded by enemies and are at war with them . Symptoms manifest in various ways.
You said patient care is difficult. What should caregivers of an Alzheimer's patient be aware of?
It is estimated that 50 percent of people who take care of Alzheimer's Disease patients will suffer from mental and physical problems eventually. This care can last for 5 to 10 years. An amnesia patient with behavioural problems can disrupt the functioning of a family. The family may not be able to take care of the patient properly or fulfill their needs. If a person stays at home to watch over them, he/she won’t be able to go to work. Family income will decrease. Worst of all, at times, the patient will show no love or even the slightest gratitude to the caregiver, who could suffer from emotional distress. They may also suffer from physical problems due to lack of sleep.
Society needs to accept that dementia is a very difficult disease to tackle and offer help accordingly. We are often curious at the thought of our neighbour suffering from dementia. But we never think of the difficulties they undergo each day. We need to empathise with the family.
Is this disease often overlooked as an age-related problem?
When the first symptoms of dementia appear, many people only see them as the effect of ageing. It's often attributed to age-related memory loss or arrogant behaviour. Or branded as a mental illness and so on. This must change. If you take 100 people over the age of 60, five of them will have dementia. 20% of people aged over 80 will have dementia. Even if you take two people above 90 years of age, one of them will have dementia. Not many recognise the symptoms.
Even if we say that it is a disease, families will sometimes refuse to accept it. In this way, the problems caused by them are dealt with according to the convenience of each and every one of them. This is what is happening now. It is estimated that there are around 55 lakh dementia patients in India and even 10 percentage of them are not diagnosed!
It is estimated that there are about five and a half million dementia patients in the world. Only one in three cases are diagnosed. Every three seconds, someone in the world suffers from dementia. This is a huge number. We aren’t aware of it. We don’t see it. The ones who have it consider this as a disease and endure it. This situation must change and there must be awareness about it.
What changes should be made in the field of treatment and awareness in the current situation?
It needs to be changed at many levels. We need to be dementia-friendly. For example, a person over 60 may ask the same question over and over again; misplace things and search for them over and over again, or forget instructions. They may be unable to recall or remember events despite reminders - these are early signs of the disease. We should understand the symptoms and when to suspect dementia.
Dementia is common and one should be able to accept it, knowing that a good percentage of people in society have this disease. Realizing that caring for a person with dementia is difficult, we must be empathetic and show a willingness to help them.
It is also important to pay more attention to researching the disease and finding a cure if any.
After a certain point, caring for dementia patients at home becomes difficult as people do not have much awareness about this disease. The patients need to be dealt with in a special way. For example, if the patient says, 'I want to go to Kollam now', we may immediately say, 'How are you going now? Shouldn't we decide first if we want to go? If you want to go by bus, you have to check the time of the bus, you have to pack your things,' etc. If we try to argue in this manner, things will get worse.
On the other hand, if we pacify the patient and agree with their plans and wonder how they wish to travel, they will forget about it in due course and focus on other things.
There is a world of difference between someone who knows nothing about their behaviour as opposed to someone who empathizes and understands their behaviour. So many problems can be avoided when these patients are handled by trained experts. Western countries have special centers for such patients. It can be day homes, long-term stay homes, second homes for permanent residents, or nursing homes. At each stage, demands will vary and professionals trained in caretaking can handle patients effortlessly. Another solution is to encourage such institutions.
In our state, the government has a plan to start a dementia care center in every district. The driving force behind this is ARDSI. Dementia Care Centers have been set up, under ARDSI, in various parts of India over the last 15 years. Such institutions should be encouraged.
What we see now is that there are institutions which take care of dementia patients, and families are keen to admit them to such care homes. But they withdraw fearing critcism.
But let's see it this way: If you fall sick, you need to go to a hospital and not stay at home. Similarly, dementia patients should be ideally taken to institutions set up specifically for their care.
We should change the misconceptions about those institutions and promote them. A change of attitude is vital. It is estimated that the number of patients will double by 2050.
Is it true that there has been an increase in the number of Alzheimer's patients after Covid and that the risk of the disease is higher now?
One cannot really attest to the claim that the number of patients suffering from the disease is increasing by the day. More patients are now being identified. Earlier, it used to be considered a disease of the elderly. Now it is recognized as Alzheimer's. Therefore we know that there are more patients.
There has been no scientific evidence to link Covid-19 to a rise in Alzheimer's cases. But it is true that patients and their caregivers have suffered a lot as COVID-19 resulted in lockdowns. Patients were unable to go anywhere and this brought about a lot of changes in their behaviour. Patients became easily angry and agitated. It is difficult to take care of them when they are sick. COVID-19 patients had to be isolated and those with Alzheimer's struggled as they could not be left alone.
Does care without a proper understanding of the disease worsen the patient's condition?
Ignorance can worsen the disease. I have seen many patients arrive at the dementia care centre in an angry state of mind. But with proper care, they get better in a week or two. The main reason is the lack of connection/communication between them and their caregivers. The patients are particularly apathetic. It is a symptom of this disease. No matter how much love caregivers shower on them, they may never acknowledge or thank them for it. Not just that, the patients may harbour negative thoughts - they feel the caregivers would take away their belongings and try to endanger them. After a while, family members or people taking care of them may get frustrated and give inappropriate responses as they do not know the nature of this disease.
However, professionally trained caregivers can make a difference. A lot of patients show a change in behaviour if they are affectionately taken care of. It is not true to say that their illness worsens because the care method is not correct. Having said that there is no doubt that they can be reassured with good care.
Is it possible to prevent disease by knowing in advance?
There are no clear indicators to predict this disease. There is no clear reason, other than observations that certain genetic makeups are more likely to occur, and that people who have learned several languages, are educated, and engage in more intellectual activities can prevent it to some extent.
It is usually seen above the age of 60. But the risk of disease remains after the age of 45. The risk of developing this disease also increases with age.
What health problems or conditions lead to Alzheimer's?
Dementia is a group of more than 50 diseases. For example, fever could also be the result of pus in the urine. Pneumonia can cause fever. Colds and some cancers can cause fever. So fever is a symptom of a group of diseases.
Similarly, dementia is a collective symptom of a group of diseases that affect the brain. Alzheimer's dementia is the most common dementia. If the thyroid level decreases beyond a certain limit, it can cause amnesia. It is dementia. If they are given thyroid treatment, they will be saved. It's not Alzheimer's. Some people may suffer infections in the brain. TB can lead to dementia. If treated, they will get better. But the most common dementia is Alzheimer's and no cure has yet been found for it.
Parkinson's is another group of diseases that affect the brain. Its main symptom is tremors in the hands and feet. Signs of inflexibility, slowness and lack of balance may also be present. About 30 percent of patients with Parkinson's may develop symptoms of dementia over time. Similarly, a small percentage of patients with dementia develop Parkinson's symptoms over time. There are also cases where Parkinson's and dementia coexist. Caring for patients with both can be challenging. They need help walking as they may fall. At the same time, they do not listen because they have dementia. They will do as they please. They will walk carelessly and fall, which can be dangerous. Because they have other physical problems, they can often be cared for only in a nursing home after a certain stage.
How is dementia diagnosed in a person?
It is more common in the elderly. It takes two or three tests to confirm Alzheimer's. One is a memory test or neuropsychology. Neuropsychology involves doing a lot of intellectual activities with the patient. For example, a person will be given 15 words and asked to remember. Or narrate a story that has been told to them. They could be shown a picture and asked to identify it. Neuropsychology will help assess the extent to which the brain has variation or impairment in intellectual function. The second is radiology and this includes scanning. There are many types of scanning including CT scan, MRI and PET scan. The third method is blood tests. If an experienced doctor says Alzheimer's with symptoms, we can accept it without any test.
What are the causes leading to Alzheimer's disease?
The cause of this disease is the change in the function of cells inside the brain. The cells are destroyed, which results in the shrinking of the brain. It happens when certain toxic proteins get trapped inside the cells, causing their functions to slow down. The cells die and the brain shrinks. The cause of this has not yet been discovered.
If someone in the family is diagnosed with dementia, there is almost a reluctance to accept it. What could be the reason?
Of course. Society does not accept this for many reasons. The most important thing is that there is no clear understanding of the disease. Secondly, even if doctors diagnose the disease, many people attribute the change in behaviour to old age. For some, once it is recognized as a disease, it should be treated. They maybe refuse to acknowledge it as treatment is difficult. And society's attitude towards the elderly is also important. There is no time, no interest in caring for them, and dementia requires extra attention. A few may even think there is no problem if we pretend they are not sick!
What kind of treatment is given to the patient if the disease is confirmed?
There are drugs to slow down the progress of the disease, to some extent, for Alzheimer's and similarly for two or three types of dementias. The changes may not be noticeable immediately. But a person whose condition can deteriorate in 10 years may live on reasonably well for 15 years.
At the same time, there are many issues that manifest as the disease progresses, for example, excessive anger or anxiety. Or the patient may think that someone is out to kill them. Drugs prescribed by doctors for these symptoms are the same as those given for mental weakness. It can reduce symptoms when used as prescribed. Being old, many people may have diabetes, high blood pressure, and heart disease. In addition to all this, dementia sufferers may experience physical discomfort. For example, dementia can get worse when you have a fever, pneumonia, an injury, or any other illness. The patients may suddenly fail to recognise familiar people. However, it gets better with appropriate treatment. Although there is no cure for dementia, there are a number of ways to improve the condition.