“The worst day was when I saw my mother try to eat tissue, mistaking it for food. This is someone who had been preparing my meals since I was young, cooking delicious food every day.”

“I don’t want to think about the day I’m most scared about, the day when she won’t even recognise me. Maybe one day she’ll forget us all. I just keep praying it won’t happen.”

This is the heartbreaking reality of what it can be like to care for a parent with dementia. Shared during a dementia care study, such accounts scratch the surface of the immense struggle that family members face when a loved one is diagnosed with the illness.

While many of us have a basic understanding of dementia and its effects, few are fully cognisant of the fact that it is one of the biggest global health crises of this century, and more people will become caregivers as a result.

It’s an inescapable truth for an ageing society like ours, but how prepared are we to live with dementia within our society, neighbourhoods and ultimately, in our own homes?

For some clues, read on as I share new insights on caregiving that were revealed in a 2024 Singlife research study on dementia.

Face to face with a dementia tsunami

According to the World Health Organization, some 55 million people are living with dementia globally today and nearly 10 million new cases are reported annually. There are also many that go undiagnosed.

In Singapore, increasing life spans and accelerated ageing are expected to increase the number of dementia cases exponentially to 152,000 by 2030, up from 92,000 in 2021. The impending dementia tsunami could turn the illness into a leading reason for long-term care, alongside stroke and mobility challenges resulting from falls. Younger generations will also face greater pressure to support and care for seniors with dementia.

Amid these projections, it’s assuring to know that majority of the Singlife survey respondents, which includes those aged 18 to 24, are “somewhat familiar” with the illness.

Here are three things to remember about cognitive decline.

Unique facets of dementia that are shaping long-term care

Caregiving for persons living with dementia (PLWDs) differs from caregiving for other health conditions as the illness is progressive and poses immense burden on caregivers particularly in the later stages. Here are six things the Singlife study revealed about caregiving for PLWDs:

1. Majority of PLWDs are unable to do at least one activity of daily living (ADL).

Among the survey respondents who included non-caregivers and caregivers, one in three overlooked the relationship between dementia and physical disability, perceiving it as solely a mental health issue that doesn’t affect physical health.

In reality, however, 89% of caregivers reported that their loved one living with dementia could not perform ADLs independently. A significant proportion are either unable to perform two ADLs (24%) or three ADLs (22%), and almost a fifth are unable to perform all six ADLs.

2. Nine in 10 caregivers make home modifications.

As PLWDs are at higher risk for accidents, it’s essential to ensure a safe living environment for them by making home modifications. Fifty-five percent of caregivers who responded to the survey said they installed grab bars, 46% installed non-slip flooring and 38% had to make adjustments to lock sharp or hazardous objects away.

Some caregivers also had to install a CCTV to monitor interactions between the PLWD and others living in the household, as violent or inappropriate outbursts could sometimes occur.

Making these modifications is not always that straightforward, however. For example, strict eligibility criteria for government subsidies means that some applicants may not qualify due to their housing type or combined household income.

3. Emotional pressures can outweigh financial pressures.

When it comes to the biggest concerns of caregivers to PLWDs, other than the financial burden (41%), caregivers are most concerned with managing their emotional wellbeing (44%) and that of the PLWD (37%).

Why does their own emotional state of health come first? It could be because each stage of the illness presents new hurdles and evokes different feelings:

• Lack of clarity on next steps – for instance, if the diagnosis is shared via a quick phone call without providing more information or assurance

• Incomplete diagnosis if the PLWD refuses to participate in tests they consider belittling

• Emotional strain of “parenting your parent” and pacifying their emotional outbursts

• Adjusting to new ways of living, which can strain family relationships

• Having to hire a different or additional helper if the current one isn’t experienced in eldercare

• High cost of active ageing or daycare centres

4. Juggling caregiving for dementia and personal life is especially demanding and keeps getting harder.

Caregivers assume the role of a “conductor”, managing numerous moving pieces at one time. Attending to the needs of the PLWD alone is financially, emotionally and physically taxing with seemingly endless duties daily. On top of that, caregivers have to simultaneously manage other aspects of their life.

Common consequences of this overload include burnout, self-neglect and depression – the very things that could possibly raise a caregiver’s own risk of cognitive decline down the road.

“People forget that I’m actually a caregiver to six people, my four kids and two elderly parents. I’m busy with my children and helping them with their schooling too. I can’t remember the last time I had time for myself,” lamented one caregiver.

Here are some effective tips to balance between being a spouse and caregiver.

5. Significant and prolonged long-term care expenses causes financial stress.

Dementia care costs increase with its severity and add up over time. Caregivers in the study estimated the average monthly cost of long-term care to be S$2,483. That’s almost half the median monthly income of $5,500.

The amount is lower for PLWDs who are unable to perform two or fewer ADLs independently (S$1,827) and higher if they are unable to do three or more ADLs (S$2,895). Note that this is only an average and excludes expenses that are not incurred by all the caregivers surveyed.

6. There's lack of clear information to navigate the caregiving journey.

Caregivers of PLWDs often struggle with the lack of a single source of information that comprehensively outlines what to look out for, and what to expect in the next stage of dementia. As one caregiver puts it, “Every day is a different drama. I don’t know what to expect. The information I get feels very generic and not specific enough.”

While many rely on information from medical staff or social workers, getting further information throughout their caregiving journey can be frustrating and challenging. “Healthcare professionals are busy, they won’t be able to give you all the information,” explained another caregiver.

As a result, they google different symptoms and situations as they happen.

A financial burden many are unprepared for

While research has found that people’s top dementia concern is burdening others, not long-term care costs, most people are financially unprepared for dementia unless they’ve had first-hand caregiving experience.

The study found that four in five have not started financial planning for long-term care for dementia. If diagnosed with dementia, majority of survey respondents said they planned to use their own savings (68%) or MediSave (66%) to fund their long-term care needs.

In reality however, some 58% of caregivers report using their own savings for a PLWD’s care needs, making this the most common source of funds, while 48% use their own MediSave. Only 42% use the PLWD’s savings. Other less common funding sources cited include cashing out their own investments, the PLWD’s insurance payouts, passive income streams, loans from relatives and downsizing their home.

Additionally, four in five caregivers say that their funding source is insufficient to cover all the PLWD’s expenses.

This financial burden can create conundrums. For instance, having to choose between a much-needed home modification and sending the PLWD for more rehabilitation sessions, or feeling pressured into a home downgrade in order to qualify for cost-saving government grants. One caregiver said it’s possible to feel “trapped” between continuing to provide care versus avoiding financial strain due to costs.

Here's why young families should be concerned about severe disability and long-term care planning.

Living meaningfully in the presence of dementia

As seen above, dementia has unique long-term care demands so it's important to have solutions that protect the wellbeing of both PLWDs as well as caregivers. The right moves and a supportive environment can empower us to make the best of life should we ever become caregivers of PLWDs or need long-term care ourselves.

Here’s what’s needed to continue living meaningfully in the midst of dementia:

Advance planning

Make a will and set up a Lasting Power of Attorney while you have full mental capacity. Clearly state your wishes on important matters like long-term care and financial matters in the event of dementia, major illness, severe disability or death.

Comprehensive protection

The policy payout should be able to fully cover monthly long-term care costs so you or your loved ones won’t have to touch personal savings intended for other purposes. Remember that inflation will increase long-term care costs over time. Policies that give payouts upon diagnosis of cognitive decline or as early as when the PLWD is unable to perform just one ADL can ensure there’s financial support for early treatment. Better still if they give additional benefits like payouts for caregiver and young children that can help cover other costs indirectly related to dementia.

Room to focus on the emotional demands of caregiving

With flexible work arrangements and assurance that care costs are covered, caregivers will have the freedom to spend more time with the PLWD and look after their emotional wellbeing.

Clear, one-stop guidance for navigating dementia care

Having a single resource with dementia information and links to essential services such as part-time caregivers, health screening and vaccination minimises time spent looking for help and quickens access to much-needed services for the PLWD.

Read the inspiring personal stories of caregivers who are stretched thin but powering on.

Conclusion

As Singapore braces itself for a surge in dementia cases, I believe it’s wise to take proactive steps to minimise the potential physical, emotional and financial burden of caregiving for a PLWD. Putting plans in place, securing good insurance coverage, having workplace flexibilities and access to timely help and support are all crucial elements that can help both caregivers and PLWDs live with dignity and meaning.