THERE are more than 46 million people in the world today who are living with Alzheimer’s Disease (AD) and the number is expected to increase to 131.5 million by Year 2050. The estimated cost of managing AD was US$818 billion and it is forecast to increase to a trillion dollars by the end of this year.
In Malaysia, the prevalence of AD is estimated at 0.126 per cent and 0.454 per cent in 2020 and 2050, respectively. The figures appear low as most family members view AD’s symptoms as normal ageing and hence, do not usually seek medical treatment nor report it to medical authorities.
According to the AD Foundation Malaysia, in 2015 there were about 123,000 people in Malaysia with this disease and this is a very conservative and probably under-declared figure.
The numbers are projected to top 590,000 by 2050. On average it takes up to 16 months before caretakers seek any medical advice at all.
It is thus crucial to raise awareness and remove the social stigma of AD among people, especially the caregivers.
This affects the patients themselves, their family, friends, and especially the caregivers.
In order to improve their quality of life, the caregivers need to be knowledgeable in managing the patients so that they can reduce both the burden and the social stigma.
Definition of AD
It is a common type of dementia, which typically affects the elderly people with an accelerated decline in their cognitive functions. The patients will eventually develop symptoms like memory loss, inability to think or reason, and some major behavioural changes will occur. Early signs include poor decision making and judgment, frequent unawareness as to date and time, inability to carry on a conversation or to recover misplaced items, and so forth.
AD patients will also display neuropsychiatric symptoms (NPS) like agitation and hyperactivity, apathy or lack of motivation, depression, psychosis, and sleeping disorders.
What are the major contributors?
Family history, old age, genetic factors, vascular and metabolic disorders, sedentary lifestyle, unbalanced diets, brain injury, and level of education are a few risk factors that contribute to its progress and advance.
There are seven stages of dementia (AD) and this includes the first three stages, which are early signs and denoted as ‘No Dementia’ but still classified as Stages 1 to 3:
• Stage 1 is ‘No Cognitive Decline’;
• Stage 2 is ‘Very Mild Cognitive Decline’, and;
• Stage 3 is ‘Mild Cognitive Decline’.
We can find ourselves within the criteria and showing symptoms of what is being described as falling within these criteria – from no memory loss to increased forgetfulness, slight difficulty in concentrating, decreased work performance, getting lost more often, and having problems finding the right words when we communicate.
Stage 4 is ‘Moderate Cognitive Decline’ and it spells early stage AD, and this stage includes decreased memory of recent events, difficulties managing finances or traveling alone to new locations, and may be in denial about their symptoms as well as starting to withdraw from family and friends.
Stage 5 is ‘Mid-Stage with Moderate to Severe Cognitive Decline’. Memory loss becomes more prominent and sufferers need help with daily activities, and they start to forget their address, phone number, and may not know the time or day or even where they are.
Stage 6 is ‘Severe Cognitive Decline’ (Middle Dementia) when patients will require extensive assistance to carry out daily activities, they start forgetting names of close family members and counting down from 10, and finishing simple tasks. The start of incontinence will be a problem and their ability to speak declines, there are major personality changes and delusions, compulsions, anxiety, and agitation may occur.
Stage 7 is ‘Very Severe Cognitive Decline’ (Late Dementia) and is called ‘End Stage’. By this end-stage, patients have no ability to speak or communicate, they require full assistance with all daily activities (like going to the toilet, eating, and taking care of themselves) and they will often lose their psychomotor skills, for instance the ability to walk.
For the family members as well as professional caretakers, AD is the most devastating of afflictions – it renders one completely helpless in the face of such a debilitating disease for which there is no knowledge of what has caused it and if there is a cure. Medicine today only knows how AD affects the brain and in turn the entire body; thus far they have yet to discover what causes it.
As of today, there is no known cure, although if detected and arrested at between Stage 4 and 5, there is some treatment and medication is available which can either slow it down or temporarily lessen its impact. However, it does not work on every patient, as some are luckier than others. There is no complete cure as such. Research is ongoing throughout the world for a cure for this disease, which can strike anybody at any time, although usually after the age of 60.
On a personal level, I have a 20 per cent greater chance of being afflicted with AD as my family history has shown that from my maternal side there have been cases in very recent memory.
Personally, it’s the greatest of all sorrows and the feeling of helplessness as witnessing a family member afflicted with AD is unlike any phenomenon one can ever experience. The early stages from Stage 1 to 4 may drag on for a number of years; and one might be deceived into thinking that it’s a passing phase or just something that comes with ageing and the expected dying of one’s memory cells in the brain.
It’s from Stage 5 onwards that one finally realises that it’s for real and that the clock cannot be turned back, and that no amount of time, effort, money or medical expertise can result in a cure for the afflicted. At best, there are ways to ensure that there’s still a good and decent quality of life for the patient and to ensure that his or her last days are as comfortable as you can possibly make it. One literally watches someone that you love dearly disappear into the abyss in front of your very eyes.
The greatest sorrow is the total loss of memory; the patient will forget not just who she is or was but every single grain of memory that she may have of you, her husband, her son, her daughter has been completely wiped out and only a clean empty slate is left behind in her memory bank.
As for the loved ones left behind, there are only just memories left. Good, loving, caring moments from childhood, the loving times spent together and the unforgettable happy moments of the past – they’re all you have left to cling on to.
One would not wish even one’s worst enemy an affliction such as Alzheimer’s Disease. I can only pray to God that a cure would be found within my lifetime. To all those who have been caregivers or who are living with an AD patient in the family, or are friends with one, you are indeed blessed to be able to give some comfort. I pray that you will continue to do so. Amen.