What living with dementia is like

Recently, Khairy Jamaluddin revealed that his father in law, Malaysia’s former prime minister, Abdullah Badawi or better known as Pak Lah, suffers from an incurable chronic degenerative condition called dementia. It was reported that Pak Lah started showing signs shortly after he retired as the 5th prime minister.

Dementia is described as a “cruel condition” by KJ as it leads the patient to the point of not recognising their family members and acting aggressive as they begin to slowly lose their memory.

“There are more bad days than good. So have him in your prayers and we hope for better days ahead.” – KJ, as quoted from New Straits Times. 

It is important to note the difference between dementia and Alzheimer’s, as dementia is not a disease but a compilation of symptoms such as forgetfulness and confusion, while Alzheimer’s is a specific disease of the brain that often causes dementia. This minor difference is crucial to know as both conditions require different care management and treatment, says expert.

Dementia is not a burden for one to bear alone

In conjunction with Alzheimer’s day that takes place on 21 September every year, those affected by the disease aim to highlight the importance of support for people living with dementia and families following a diagnosis, with this year’s theme being Know Dementia, Know Alzheimer’s.

PC Gan, Country Manager of Homage Malaysia, is determined to ensure that no one has to go through this alone. The experience of seeing her friends struggle caring for their old parents who suffer from the condition has opened her eyes; from getting called atrocious names and getting their heads slammed to the wall.

She mentioned that these instances are more common than one might think, as it is expected to see changes in behaviour in the patients as the condition progresses into the later stage.

However, in the op-ed article that was shared with us, PC Gan mentioned that she believes as much as it is hard for the caregivers, it can be scary for the patients as well:

“From being lucid, everyday people who actively participate in life to someone who finds it difficult to grasp that their memory is deteriorating and worse, having difficulty distinguishing reality from hallucination.“

Upon realising this, PC Gan had initiated a joint effort between Homage Malaysia and family members to care for the patients of dementia. This is to lessen the burden of the children who are caring for their sick parents without having to entirely compromise their mental health and well-being.

I’m young, why should I care about this?

Well, Malaysia is moving towards an ageing nation, and according to the Alzheimer’s Disease Foundation, Malaysia (ADFM), the number of older adults (those of age 60 and above) suffering from dementia is likely to increase in the next 30 years.

While age is known to be the common cause of dementia, genetics and lifestyle play a role too, but really, there’s no one way to explain this.

Alas, the stigma that dementia and Alzheimer’s are a normal part of ageing has left 85% of those suffering from dementia not receiving post diagnosis care, and this will eventually affect us more than we’d anticipated.

“The dementia community faces various ethical and legal challenges such as advance care planning, surrogate-decision making, testamentary and decision-making capacity (with regards to treatment decisions, life and care choices, property and finance management, and wills); criminal cases perpetrated by people with dementia; apparently mundane issues of daily life such as driving.”

That being said, this should be a reminder to those caring for dementia patients that you are not in this alone, and help is just a phone call away.