The slow erosion of self: What dementia steals from caregivers

When Jessica's father died after a long battle with cancer, her mother began showing signs of dementia - forgetfulness, mood swings, disrupted sleep.

At 45, Jessica left her job to grieve and care for her mother, thinking it would be a short pause before she returned to work.

But the pause stretched. Months became years. Jessica's world shrank to the four walls of their flat. Outings with friends stopped. Nights were broken by her mother's repeated wake-ups.

To get by, Jessica took on odd jobs, but she felt herself fading - no longer the confident professional she once was, but someone whose energy and joy were slowly eroding.

"I found myself out of touch. I became a dull and boring person," she admits.

Eight years on, she is drained, still balancing her mother's needs against her own survival, unsure if she can ever find her way back to the life she had.

Samantha, 44, lives the same exhaustion every night.

At midnight, her mother jolts the household awake, insisting they get ready for work or school.

"It's challenging talking to her because she can't remember what we say," she shares.

The broken nights bled into her days - she struggled to concentrate at work, her body tensed each time the phone rung, and she lived in a constant state of alert.

The hidden weight of dementia

What most families don't see coming is that dementia is never just about memory loss.

It creeps in quietly, then overwhelms with symptoms such as sundown syndrome - where behaviour becomes more agitated in the evening - and personality changes that make a loved one feel like a stranger, as well as speech difficulties and sleep disruption. For caregivers, the emotional toll is immense.

Many caregivers, unaware that these behaviours are part of dementia, respond with frustration.

Mei Yi, a woman in her 70s, had forgotten how to do laundry. Before her diagnosis, her husband had scolded her, thinking she was being difficult. Only after a doctor confirmed her dementia diagnosis did the fighting stop.

Similarly, Jasmin, 43, remembers her father lashing out at her in anger.

"He even hit me on the arm once," she recalls, feeling hurt and helpless, not knowing it was the illness speaking through him.

These moments leave scars - confusion, guilt, helplessness - even as caregivers press on with appointments, meals, medications and the endless small tasks that keep life going.

Losing pieces of themselves

Caregiving rarely begins with a dramatic choice. It starts with "helping out". A ride to the clinic. Cooking extra meals. Picking up forgotten tasks.

Slowly, invisibly, it takes over.

And as it does, the toll is not just on the person who is ill.

It seeps into the caregiver's life, too - into their sleep, their health, their sense of self. In interviews with 29 caregivers aged 35 to 75 - each supporting a parent, spouse, sibling or grandparent with chronic illness - we found that vulnerability doesn't stop with the person who is ill. It spills over.

Sleep is stolen first. Then hobbies. Then friendships. Eventually, careers.

Some caregivers leave work altogether, giving up income and savings they may never recover.

Others stay in their jobs but drag themselves through each day on empty, their minds foggy, their identities slowly slipping away.

An ageing nation, a growing burden

Jessica and Samantha are not outliers. Singapore's population is ageing rapidly. More people in their 40s and 50s are caring for parents in their 70s or 80s.

Of the 29 caregivers we spoke to, 19 - or about two in three - are actively caring for a loved one with dementia at home.

These "sandwiched" adults are balancing careers, children and elderly parents - sometimes stepping out of the workforce entirely.

Many don't even identify themselves as "caregivers" at first. They are just daughters, sons, spouses. Until one day they wake up and realise their own lives have been reshaped by exhaustion, isolation and loss.

The weight is not just personal. It ripples outward - into families, workplaces, and ultimately the economy, as a whole generation risks being drained just when it is meant to be most productive.

To respond to an ageing population, Singapore's move towards decentralised care, such as home-based, centre-based and community care, not only helps ease the strain on hospitals, but also fosters a stronger culture of shared responsibility, where individuals and communities play a more active role in caring for one another.

But more can be done to support primary caregivers of dementia patients living at home.

Moving forward

Dementia arrives slowly, and caregiving often follows the same path. Jessica and Samantha's stories are a preview of what many in Singapore will face.

If we continue to overlook caregivers, we risk burning out the very people who hold our ageing society together.

Supporting caregivers cannot be an afterthought. It must be a national priority. Admittedly, there are no dramatic fixes and no silver bullets.

But small, steady support matters. Public awareness of dementia's hidden symptoms can ease family conflict and guilt.

Respite care and peer support can give caregivers breathing space. Workplaces that normalise conversations about caregiving and offer flexible arrangements can help people stay in the workforce without abandoning loved ones.

None of these erase the slow erosion of self that caregivers face. But they can stem it - and give caregivers back some pieces of themselves.

Recognising caregiving as a shared responsibility is no longer optional; it is the only way forward. Our elders deserve dignity and support, but so do the daughters, sons and spouses who care for them.

If we fail to see this, we risk losing not just one generation to illness, but another to exhaustion.

Supporting caregivers means safeguarding the future, so that both the cared-for and the caregivers can live and thrive.