More than what’s forgotten:Re-imagining dementia care as collective practice

In the living room of a terrace home along the old streets of Singapore, built somewhere in the 60s, I sat with my patient, a 68-year-old woman, as she clapped along to the cheery tunes of a nursery rhyme. With rusty gates and dated cabinets, the design of the house was not the only thing stuck in time. The behaviour of my patient has gone back to when she was a child. 

It was only a few years ago that she was still a nurse manager like the ones I worked under in the hospitals. She led teams and ran shift assignments. Now, I care for her in the same way she had taken care of countless others for decades. It struck me how thin the line is between giver and receiver. It was a sobering reminder of the line each of us treads as humans, when the caregivers in our lives could quickly be the ones who need to be cared for.

My affinity for caring for people with dementia goes beyond my professional capacity. After five years of caring for the loved ones of others, my once independent (and a little feisty) grandmother began exhibiting signs that were all too familiar to me. That’s when I knew – the condition I had come to know so well as a caregiver had entered my personal life.

When my grandmother was diagnosed with dementia a few years ago, the news was met with theories of bad diets or a lack of exercise. One uncle refused to accept the truth: how could the strong, independent mother they knew suddenly forget them?

As a professional, they watched me cope better by going along with her repetitions and offering love as she expressed fear over her fading memories. But even with years of training, nothing could have prepared me for the pain of watching her decline. 

The first time she forgot 

I began working in elderly home care when I was only 19 years old. My very first patient was a quiet elderly lady with dementia. She hadn’t left her room in months and barely spoke a word, but she trusted me because I could communicate with her in a language she held close to her heart. I chatted with her in Cantonese, her native language, and joined her for breakfast after helping her with her morning shower. These little routines, so simple for most people, can be incredibly challenging for someone with dementia. 

As a professional caregiver, a large portion of my time is also spent supporting clients’ families. In one of our early conversations, my client’s daughter shared the first time her mother stopped recognising her – a common heartbreak of dealing with your loved one’s dementia – and she broke down. It may not have been a surprise, it may even be expected, but the pain and grief of being forgotten by the very person who brought her to this world still sat heavily. 

In between tears and a state of daze, the care centre manager noticed her pain and gently brought her aside and stayed with her. Sometimes, there are no words that can offer any comfort in a moment as raw as this. There is no way to understand this other than to recognise that the slow process of grief is playing out over time. 

As someone who has cared for many people with dementia up until their last breath, I have learnt that oftentimes there isn’t much more we can do other than to uphold the dignity of the person as we learn to say the difficult goodbyes to the past versions of the person we used to know.

Dementia is often understood as the disappearance of memory, identity, and meaning. However, it can also be seen as a space for dignity, presence, and community. In my eight years of caring for people with dementia as a nurse, a caregiver, and as a granddaughter of my beloved grandma, I have spent most of these years challenging the notion of treating dementia as a tragic end, a slow death, but rather seeing it as another way of being human.

In Southeast Asia, where rapid ageing intersects with deep-rooted cultural silences, dementia care reveals not only medical gaps but social ones: of stigma, policy neglect, caregiver invisibility, and the urgent need for relational, community-based approaches. Our survival has long needed the grace of others, the care of a community, and the uplifting of vulnerable others; so why do we view the care of people with dementia as an utterly painful outlier, one to be feared at all costs?

Cultural silences and stigma

It is strongly rooted in many Asian cultures to respect our elders, but not necessarily to understand them as they begin to change. Dementia has been cloaked in euphemisms and shame, with phrases like “memory problems”, “going crazy”, and being “burdensome” used instead of the proper diagnosis. 

Even in hospitals and healthcare settings, I have overheard colleagues saying: “He’s demented, just ignore him.” The lack of understanding and empathy in using hurtful terms like “demented”, “senile”, and “regression”, especially from the very people who are supposed to advocate for them, is unacceptable, yet rampant. 

The words we say have power. While people with dementia may process the world differently, they are still aware of the actions that hurt. Wordings like these aim to strip them of their personhood.

How traditional Asian values influence coping

Another example of the unique caregiver struggles within an Asian context is how Confucian values of filial piety expect children to care for their ageing parents. However, this moral imperative can come with little emotional support or a current understanding of the nuances involved with caring for a deeply complex condition like dementia. 

For many I have spoken to, talking about caregiver stress feels like a betrayal; expressing grief of watching your loved ones change in both minute and drastic ways could be met with an unempathetic response of it’s your duty. How do we hold space for the pain and struggles that come alongside the unbridled empathy for your loved one with dementia?

We often focus on the loss and anguish of the person with dementia – as we should – but one vital aspect of this condition that’s often overlooked is its impact on the people around them. This means that many caregivers burn out in silence.

According to a 2024 study, 48% of caregivers to people with early dementia reported difficulties, 47% reported significant depression, and 57% had to juggle employment responsibilities. Elderly people with dementia are frequently hidden away, neglected, and kept where they are no longer adequately cared for. This could be due to a mix of guilt and a persistence in keeping our loved ones under our care because it’s the right thing to do, even if it is no longer bearable for the carers. 

Recognising that love in itself could simply not be enough for a condition that requires a community of supporters to rally behind is difficult. It is hard to say what really is the kind thing to do when there is no right answer.

Early signs of caregiver stress and elder neglect are often ignored, and the mental health stigma is compounded within this group. Furthermore, cultural norms lead to poor structural support across the region, where support systems and public awareness are underdeveloped.

Reimagining care through embracing dementia

This silence in the space of dementia care was what led me to start Project Embracing Dementia during my time at the Alice Lee Centre for Nursing Studies, National University of Singapore. In its conception, I felt an urgency to create spaces where healthcare students could witness, experience, and truly understand what dementia is. I also wanted to create a space for people within the dementia community to feel heard, cared for and supported when they get overwhelmed. This initiative offered a space for everyone to learn, share and listen.

The team grew as students, industry professionals, and caregivers of people with dementia gravitated to the common mission. Over the years, hundreds contributed to public outreach events, fundraised for the community, convened intergenerational dialogues and created interdisciplinary interventions. We partnered with leading organisations and practitioners in dementia care to translate key insights and learnings across institutions and borders. We didn’t just study dementia, we gained a deeper understanding about it through immersive volunteering, transparent conversations and opportunities that brought together the voices of caregivers and patients themselves.

I still remember one session where a young man and his father with early-onset dementia living in Singapore shared openly about their struggles. He talked about the changes he witnessed in his father, and how every day is a different challenge he could never really adequately prepare for. The man’s father expressed his thoughts in between moments of lucidity and confusion, talking about how he doesn’t quite know who some people are, but that they must love him, seeing how they care for him. In his words and body language, the fear and desolation were palpable, yet the mutual trust and love were also apparent.

This encounter and every single one I had the privilege of encountering across my time in dementia care have shown me how language opens new pathways to care. What if we reframed “memory loss” as “relational memory”? Can we see memory as something that is not a fixed function, but as something that is shared across people and time? 

Structural gaps and new possibilities

Despite these nearly decade-long efforts and our optimistic outlook, we have to recognise that community initiatives emerge despite systems, rather than because of them. Numerous structural and systemic gaps within healthcare institutions in Southeast Asia make living with dementia a painful reality. 

In my experience as a healthcare professional, many eldercare facilities, including daycares or community services, are unable to accept people with dementia. This is largely due to a lack of training, resources, and infrastructure needed to support their complex care needs. While acute public health issues and overt crises, such as a global pandemic, demand more attention, chronic developing phenomena, particularly the rise in dementia, risk being overlooked. Yet, if neglected, they may demand even greater effort and cost in the long run.

We need to design cities with dementia in mind. It is something that concerns every single one of us. We are a community linked by a shared common thread. What affects others will affect us too, in some way, at some point in time. 

How could this look, you may ask? Clearer signages with bright colours and easily recognisable symbols; safe walking paths where people with dementia could wander safely; memory cafes that embrace the needs of the dementia community, coupled with a society that uplifts initiatives like this; and intergenerational housing and the normalisation of non-familial supports in mapping out networks of care. While many Asian societies rely on family for care needs, with a declining birthrate, we need to reimagine a new society of care.

Memory as an inheritance

We need to fundamentally rethink how we view dementia. It is not just a medical condition, but a social one. It reshapes families, challenges systems, and reveals our capacity for care. And because it affects a community, it must be met with the strength and tenderness of a community.

I wrote this not only for my grandmother, but for my aunts and uncles who are still learning not to correct her, for the families of my patients who carry invisible grief, and for anyone who loves someone with dementia. And lastly, for you: if you have been diagnosed, this is not the end. Memory is not just a brain function; it is a practice of care. It is a collective inheritance. You live on in every life you’ve touched, and they live on in every version of you. I cannot imagine the pain you are going through, but I believe deeply: you will be held.

This piece is my attempt to open our eyes and hearts to the complexity of dementia care. Let us hold on to one another, not through perfect recall, but through presence. Let us meet each other where we are, and build a world where no one is left behind in their final chapters.