World Alzheimer’s Month: Coping with Alzheimer’s and dementia

The memory loss typical of Alzheimer’s disease (Alzheimer’s) and dementia is often misunderstood to be a consequence of aging. In conjunction with World Alzheimer’s Month this September, it’s time for us to better understand the differences between Alzheimer’s and dementia, and empathise with the struggles faced by families and caregivers of Alzheimer’s and dementia patients.

PC Gan, the Country Manager at Homage Malaysia, tells us a little about the sombre experiences of close associates of patients with the condition, and goes on to explain how carers at Homage Malaysia can relieve some of that burden.

I grew up in a humble and middle-income family: I remember my dad having to work multiple jobs to put us through college whilst my mom stayed home to take care of the three of us. It was warm, loving, and fun – except for the small instances when my mom used to scold me for not understanding mathematics.

Thinking back to all the things my parents gave us, I cannot help but feel this incredible sense of gratefulness watching them both age gracefully; able, active, and healthy well into their 70s.

Even then, when I look at my circle of friends, it breaks my heart to see that not everyone is as lucky as I am. One friend has a parent who suffers from dementia, and I see the toll a condition like that takes on a person, and the people around them.

[In addition to memory loss, dementia patients are prone to atrocious name-calling and some may even become violent for a time.]

Sadly, these instances are a lot more common than one might think for an elderly who suffers from the later stages of dementia. Dementia is not a normal part of ageing. It is caused by damage to the brain cells that affects a person’s ability to communicate, which can affect thinking, behaviour, and feelings.

A lot of times, people mistake dementia and Alzheimer’s to be the same thing – both are similar but they are not the same.

Alzheimer’s is a degenerative brain disease. A common early onset symptom of Alzheimer’s is trouble remembering new information because the disease typically impacts the part of the brain associated with learning. Dementia is an umbrella term for a decline in mental ability severe enough to interfere with daily life. Alzheimer’s is the most common cause of dementia.

Alzheimer’s is a specific condition; while dementia is not.

It is important to distinguish between the two to be able to reach out or provide patients with the care that they need. I would not even be able to begin to fathom what an elderly patient would feel as they start to realise what is happening to them: 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.

And that is not where the impact of the disease ends. To the family, managing this disease can be tiresome and incredibly painful especially if the elderly patient needs close monitoring.

Could you imagine watching a parent whom you looked up to and relied on all your life, who raised you, slowly start to disappear right before your own eyes?

At Homage (Malaysia), we care for many elderly people who suffer from dementia and Alzheimer’s disease. Reading the visit reports by our professionals is difficult –each report holds so much emotion and concern. One talks about how atuk thinks he is still at war and often needs to hide to protect himself; in another, it says that popo insists on going to bus stop opposite the house at 4pm everyday because she needs to pick up her grandson from school, despite her grandson now being 25 years old and studying in the US.

What do we do as family members, as people trying to root them and help increase their quality of life? Do we convince them that this was 50 years ago, or do we follow their schedule? Do we walk or hide or run alongside them?

What I have come to realise is, to navigate through these hurdles, one would need a lot of patience, effort, mental space, and most importantly help. There is a stigma within the Asian community mostly, that a child MUST take care of their parent when they grow older and should not ask for help. Your parents raised you on their own so you must take care of them the same way too.

But this is not the case. There is no shame in asking for help – elder care does not have to be a burden you take on alone.

Caregiving is a joint effort between the providers and the family. When you need a break, you take that break, and we can step in to help. Mental health and self-care are quite widely talked about these days, and it is important.

For a child to be able to manage their own emotions by convincing themselves that the name calling by their parent was not personal and at the same time juggling the physical care of the parent is not only stressful but draining. The number of times I have heard families say they feel guilty for wanting to give up that weight on their shoulders is much more than I care to mention. However, I always say that asking for help does not mean you are not good enough or that they are being too difficult, that you are running away from your responsibilities.

It’s because circumstances have made it so and it is nobody’s fault. But, at the same time, being empowered by knowing more about the disease as well as the available options out there can help you as a caregiver, to cope and provide solutions. Hence, to me, this year’s theme ‘Know Dementia, Know Alzheimer’s is beyond simply identifying the symptoms and early detection of the disease but to also learn how to cope with it at the different stages.

For a child; to a beloved parent; without losing the bond and love that they once had for each other.

Category: Community