The irony of caring for someone suffering from dementia is that you never really forget.
It’s impossible to describe how our family felt when my grandma was diagnosed, but what pain we felt was nothing compared to seeing the way she clung on to pieces of her memory as her disease progressed.
In Singapore, about 1 in 10 elderly aged 60 and above suffers from dementia. In 2018, this corresponds to approximately 82,000 people living with dementia and is set to increase to 152,000 by 20301. With these rising numbers, it’s critical to understand this disease to better prepare you and your loved ones for the unexpected.
We speak to Dr Warren Ong, Senior Vice President of Singlife Health Services about the differences between dementia and other subtypes like Alzheimer’s, as well as dispelling some beliefs I formed when I cared for my grandma.
Is Alzheimer’s different from dementia?
When my grandma was diagnosed with Alzheimer’s, we heard many other related medical terms. We all thought that her illness was brain degeneration and hence different from dementia or any other types we’d heard about before.
It turns out that Alzheimer’s is technically dementia, since it’s one of the subtypes under an umbrella term of dementia.
Alzheimer’s Disease is the most common, caused by the build-up of certain proteins in the brain cells. This disease has a slow onset and progressively impairs memory as well as cognitive skills, eventually impairing the ability to carry out simple tasks.
Vascular Dementia is caused by disease or injury to blood vessels in the brain (head trauma, stroke). It happens abruptly and symptoms vary according to the location and impact of trauma to the brain.
Lewy Body Dementia (LBD) occurs when there’s an abnormal build-up of structures called Lewy bodies in brain cells. It impacts movement, thinking and behaviour. It can also happen with Parkinson’s Disease, and impacts attention, organisation, problem solving as well as planning skills.
Frontotemporal Dementia (FTD) is caused by progressive damage to the frontal or temporal regions of the brain. FTD can lead to reduced intellect, affecting the patient’s personality and causing language difficulties. It’s also often mistaken for Alzheimer’s or other psychiatric disorders due to these symptoms.
Alcohol-related dementia, as its namesake implies, is a cognitive disorder caused by excessive alcohol consumption. An alcohol dependency can lead to a lack of Vitamin B1 being absorbed or used by the brain, which can lead to brain damage.
Dr Warren notes that of all these, FTD presents the most significant changes. “Patients with FTD present larger social and personality changes, with symptoms including parkinsonism. FTD is one of the more common types of early-onset dementia and tends to happen around 45 to 64 years old.”
Why do dementia patients only recall certain memories?
There were moments where my grandmother would abruptly recall us in detail, and it seemed like she was back to normal for those few minutes before she reverted to her usual state. In these moments, I assumed it was proof that my grandma was still herself but her consciousness was somehow blocked by her Alzheimer’s.
“The workings of the brain are extremely complex and yet to fully understood by scientists,” Dr Warren says, “but research suggests that the reason someone with dementia remembers old memories while new memories fade is because the disease affects the part of their brain – the hippocampus – which processes new memories first.”
Since older memories are considered more well encoded into the brain, Dr Warren uses the “last in, first out”1 concept to explain why people suffering from dementia retain information from a longer time ago. He adds, “The hippocampus of the brain is responsible for memory and learning. With Alzheimer’s, the hippocampus is the first area to be affected, hence new information is not retained but older information takes the longest to fade.”
As time progressed, my grandma’s Alzheimer’s seemed to affect most of her memories, but her maternal instinct never allowed her to forget gentleness or concern for anyone who visited her – even if she couldn’t recall who we were.
Does Sundowner’s syndrome only affect Alzheimer’s patients?
I remember the warnings of family members whenever I visited my grandmother in the evenings – they spoke about her tantrums and agitation which would flare up irrationally at this time, how she tried to leave the house and resisted any attempts to calm her down.
This rang true. Like clockwork, her mood swings would happen around the same hours each day, before we were advised of the Sundowner’s Syndrome.
“Sundowning is characterised by the sudden onset of neuropsychiatric symptoms including confusion, agitation and anxiety, often occurring during late afternoon and early evenings,” Dr Warren says. “The prevalence of this syndrome ranges between it occurs among 2.5 to 25% of all dementia patients and is not limited to Alzheimer patients.”
“While there’s no conclusive cause defined, sundowning is said to be related to changes in a patient’s circadian rhythm (internal body clock), as well as the impact of brain degeneration. Research has also shown that changes detected by the retina increases light sensitivity, which could also be a contributing factor.”
To prepare for and reduce this dramatic mood shift, we took steps to keep my grandma’s environment familiar and calming2. We soothed and kept her occupied with familiar activities, from folding napkins to practising calligraphy or even taking a nap to get over the worst of her sundowning.
Are there any forms of hereditary dementia?
Seeing how my grandma’s Alzheimer’s progressed, I found myself increasingly concerned for my mother (she’s often forgetful), specifically, her likelihood of getting dementia in the future and if we needed to worry about any inherited traits of the illness.
Dr Warren advises, “Majority of dementia conditions aren’t hereditary – while there are identifiable genes known to increase the risk of dementia, they don’t directly cause it. Many with these genes may never develop dementia while on the other hand, many without these genes do develop dementia.”
“However, there is a very rare form of dementia called Familiar Alzheimer's Disease (FAD)3 which is hereditary,” Dr Warren notes. “It’s a subtype of Alzheimer’s which accounts for less than one percent of all dementia cases and is caused by a genetic trait. While testing may identify the presence of this variant, it’s very rare so routine testing isn’t recommended.”
Prevention is better than cure
With dementia, the key is focusing on prevention and there are modifiable risks which can be adjusted to reduce the potential risks of developing dementia.
These modifiable risks include:
- Physical activity. Increasing physical activity, which is not only good for your overall health, also improves your mental wellbeing. Regular exercise also helps with maintaining healthy blood pressure and cholesterol levels and keeps your vascular health in check.
- Tobacco use. Quit smoking. Smoking is known to cause many health issues including cognitive decline, which is a key risk factor for dementia.
- Excessive alcohol consumption. If you’re knocking back more than 21 units (the equivalent of two bottles of wine) per week, it’s time to cut back to reduce your brain’s vitamin deficiency and preserve brain function.
- Protecting the head and brain. Exercising moderate precaution in high-risk activities (wearing appropriate headgear for sports and practising workplace safety with helmets). It’s also important to seek medical attention for any sustained head injuries whether big or small, to ensure there are no lasting effects of trauma.
- Mental wellness. Studies have shown that healthy social contact and frequent interactions with loved ones greatly boosts quality of life, which improves your mental wellbeing and helps support brain health, possibly delaying dementia.
“Studies have shown that keeping the mind active through cognitive leisure activities – learning something new, doing puzzles – may reduce brain cell damage which happens with Alzheimer’s and support growth of new brain cells,” Dr Warren says. “Aside from lifestyle interventions, analysis estimates that lowering the prevalence of hypertension and diabetes may reduce the incidence of Alzheimer’s.”
Was putting Grandma in a hospice the right choice?
As an Asian family, the concept of placing our ailing matriarch in a hospice was unthinkable and raised heated conversations about filial piety. I recalled the immediate rejection of even thinking my grandma would need to be cared for in a facility, but as her symptoms worsened, the decision was finally made to place her in specialised care.
While my uncle’s family did their best to cope with her symptoms and keep her safe with round-the-clock care, her Alzheimer’s deteriorated to a point where even the most patient of caretakers would require professional intervention.
“Caregiver support is crucial in preventing burnout as caring for dementia patients can be challenging – especially with the behavioural changes faced by loved ones,” Dr Warren says. “There are options for support, resources and guidance for caregivers depending on the illness severity and patient requirements and a hospice option is typically recommended for patients with end-stage dementia approaching their end of life.”
After initial adjustments to a new environment, both my grandma and my family felt reassured by the specially trained medical staff at the facility she was in. Even when she eventually lost her motor and cognitive abilities, the medical staff relentlessly cared for her to the highest degree throughout her final years – we were especially touched to know they’d bonded with my grandma to the point that they too grieved when she eventually passed on.
Even though dementia is an irreversible condition, the diagnosis shouldn’t mean a dead end for anyone. If you or your loved one needs help coping with dementia, there’s help available. It’s crucial to equip yourself with the right information and tools to be able to live with dementia or care for someone with dementia.
Whether you’d like to find out more about the disease or require guidance with caring for a loved with dementia, here are some resources in Singapore for dementia patients and caregivers:
- Source: Dementia Hub SG, “What is Dementia?”, accessed on 4 September 2023.
- Source: Silverado, “Why do people with Alzheimer’s remember old memories?”, accessed on 4 September 2023.
- Source: Cleveland Clinic, “Sundown Syndrome,” accessed on 8 September 2023.
- Source: Healthline, “Understanding how Dementia is passed along families,” accessed on 8 September 2023.