An Existence from moment to moment

Today is World Alzheimer’s Day Sept 21

Preliminary studies show an Alzheimer’s disease prevalence of around 3-4 % in Sri Lanka 

Some drugs used in the treatment of Alzheimer’s disease are not available in government hospitals; we are keen that the government should supply these drugs

At some point a patient may lose the capacity to make decisions such as the writing of their last will or being able to conduct their financial and legal matters

Once in a while, you tend to misplace your keys, forget about a cup of tea until it’s gone cold or even completely forget about what day of the week it is. But what if one day you’re unable to recall your last meal, or simply fail to recognise a family member? For a person suffering from Alzheimer’s disease, this would be the harsh reality he or she is forced to live with. 

As many as 200, 000 people in Sri Lanka are likely to be suffering from Alzheimer’s disease, the most common cause of dementia, according to Professor Shehan Williams, Department of Psychiatry, University of Kelaniya. “There is no formal study which has been conducted island-wide, but preliminary studies show a prevalence of around 3-4 % which would mean around at least 200,000 people would be affected by Alzheimer’s disease in Sri Lanka at the moment,” Prof. Williams said. 

Dementia is a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. “In dementia a person has progressive impairment of memory, intellect and cognition. There are many causes of dementia but the most common cause is Alzheimer’s disease, which is a degenerative disorder. It is something that people acquire late in life, usually when sixty or seventy years, but fairly also in their late forties and fifties,” Prof. Williams clarifies. 

“What really brings it on? Nobody knows. It is certainly not the normal consequence of ageing. Not everybody develops this disease. Just because a person is old, it doesn’t mean that they will have significant memory problems. There are people who live well up to 100 years and beyond and don’t have any issues with their memory or intellectual capacity.”  

However with the onset of this disease, a person’s memory and capacity starts declining. Medically it has been explained as a result of certain changes that take place in the brain. “There is excessive amyloid deposition and what we call tau proteins which are deposited within the cells of the brain. The accumulation of these substances results in death of brain cells. Therefore over time the brain starts to shrink and the brain matter or cells decline. Particularly the areas related to memory and cognition are affected, so much so that most people -- although physically fit -- are initially unable to remember things. They’re also unable to carry out their day to day activities and therefore may develop so many behavioural abnormalities,” Prof. Williams explained. 

Unfortunately even modern science has failed to discover a cure for this frightening disease. Prof. Williams tells us that there are some treatments which may delay the progress of the disease, but nothing can be done to stop it. That is exactly why we need to understand the nature of the disease, he adds. “If possible we need to identify the disease early so that we can help people during the early stages and support them through the progression and possibly delay it. It also involves planning ahead because a patient may eventually come to a state where they even forget their family members, those near and dear to them. They tend to lead an existence from moment to moment, where they are unable to remember what is happening around them and interact meaningfully with others or their environment,” underscores Prof. Williams. 

Is memory loss always a problem?
The topic of a degenerative disease with symptoms of memory loss may be a concern for some of us.  In Alzheimer’s however this tendency of forgetfulness can be identified specifically. “Initially people start forgetting things that happen in the recent past. At first they won’t even realise that they have memory issues. For instance a person would know where they went to school, details about the family or friends and so on. Those are however information they have from the past. That is perhaps stored in their mind. What becomes a problem is remembering day to day things. For instance they may not remember their meals or what they had before their evening tea. A family member would sometimes react to this thinking that this person is trying to be difficult. But the problem is that they have really forgotten that they’ve had the tea,” he said. 

A person would start forgetting little things. They may not be able to find their belongings and would sometimes even accuse someone of stealing them. They may sometimes keep repeating the same thing on and on again because they forget that they have mentioned it before. “We all tend to forget, so it’s a bit of a difficult call initially. Even though people do forget little things, which we call senile moments, those necessarily don’t indicate dementia or Alzheimer’s disease. In Alzheimer’s symptoms are persistent, if it continues the family should perhaps visit a doctor and do a memory assessment. Any doctor in Sri Lanka would be able to help. They could go to the nearest hospital or clinic to discuss the issue where they will be referred or helped appropriately,” opines Prof. Williams. 

Diagnosing Alzheimer’s Disease
A doctor would do a series of assessments where they initially take a history of the patient, conduct a physical examination and look for certain signs of dementia. Prof. Williams says that Alzheimer’s may not be the sole cause of symptoms. There are several other diseases which may be affecting the memory, such as hormonal issues in hypo-thyroidism, or blood supply related issues known as vascular related issues. 

A doctor would evaluate such a person comprehensively. Based on tests and investigations medical experts arrive at a conclusion about a person who has Alzheimer’s disease. Doctors would also ideally do a memory test, to screen for their scope, which would be derived by asking a few questions and asking the patient to do a few tasks. Based on all these findings the doctor would make the diagnosis of dementia and then try to look for causes of dementia. 

However the issue is when people don’t present themselves to screening services, according to Prof. Williams. “Either the family members don’t realise that there is a problem or they would assume that it is a part of the normal ageing process. Some of them are of the view that these conditions are treatable, they hope to get a better outcome or a better quality of life for the person with few medical interventions,” he said. 
What would happen if a person with memory issues  is in denial of the condition, we ask. “That’s a common situation. There are lots of people quite worried about their memory issues. There are others who really don’t realise that they forget and that their functions are declining. It comes down to helping them and encouraging them while not being judgemental. They need help in understanding that they have an issue and also help in seekinng treatment. It is a gradual process,” Prof. Willaims said. “Former US president Ronald Reagan was diagnosed with dementia. Once he understood his condition he wrote a very endearing letter to his family and the people of America detailing his condition and helping them to come to terms with the condition, which is the key role the family and professionals have to take,” he stresses.  

Treatment
One of the most important aspects in the treatment of an Alzheimer’s patient is to evaluate and determine that all other parameters are normal. These would include any vitamin deficiencies and medical conditions which cause memory impairment which would have to be treated adequately.

Secondly improving the memory is considered. “We would prescribe memory enhancers which are recommended globally to help the person function better.  There are three types of drugs used in treatment but unfortunately they are not available in the government hospital. It’s rather unfortunate but patients have to purchase these drugs on their own. For some people it can be rather expensive as the cost for a single tablet would be around Rs. 30 - 50. We are keen that the government also should supply these drugs,” Prof. Willaims points out.  

Patients are also encouraged to remain stimulated and use their brain more, during the initial stages of treatment. They have to keep themselves active both mentally and physically so that brain function is maintained. According to the expert, there would also have to be care planning. “At some point a patient may lose the capacity to make decisions such as the writing of their last will or being able to conduct their financial and legal matters. They would also have to think of someone supporting them later on in life.”

Prof. Williams emphasises that the support received from the family or caregivers plays a crucial role. “They must understand that it is a medical condition. The family may have to adapt and cope with the situation. In the Sri Lankan context, initially people would opt for various solutions and treatments. Sometimes they even spend a lot of money on various unnecessary things because they don’t understand the nature of the condition. This is because of some supernatural beliefs and may start doing various rituals. At other times some may scold or abuse elderly persons demanding that they take responsibility for themselves. They won’t recognise that it is a condition and blame the patient for the way they are behaving. This could be very distressing for the patient,” he said. 

Prof. Willaims believes that most hospitals would be able to give families some direction and advice along with the treatment. “Not just family, caregivers also would need help and support and this is where we don’t have adequate support in the community. Improper care could result in worsening of the condition,” he warns. 

“Patients can be managed in a usual situation where older people can be encouraged to do as much as they can which would be more beneficial overall. We need to have community based services, where elders can support each other or younger people can be involved. Training community nurses to help families with useful advice and tips would also be instrumental,” Prof. Williams suggests.