Dementia care: 7 in 10 say it is a struggle that takes a toll on emotional and mental well-being

This content piece was produced by The Straits Times Singapore in collaboration with Milieu Insight.

SINGAPORE – More than seven in 10, or 74 per cent, of caregivers of people with dementia said in a poll that they were overwhelmed by their responsibilities. They said their biggest hurdles centred on the emotional and mental strains of caregiving. These include managing behavioural changes, navigating emotional stress and burnout, and coping with the gradual decline of their loved ones. When it comes to supporting loved ones who have developed symptoms of dementia, only one in five respondents (20 per cent) was prepared to do so. These were the findings of a joint study conducted in July by Milieu Insight, a consumer research firm in South-east Asia, and Dementia Singapore. The survey of 1,500 people showed dementia impacts not only those diagnosed with the condition, but their caregivers as well.

Dementia Singapore’s chief executive Jason Foo said: “Many caregivers have shared how they had experienced a sense of crippling anxiety upon learning of the diagnosis. The uncertainty, coupled with the need to make drastic adjustments to their work plans and lifestyle, is daunting, to say the least. (If) left unchecked, depression can quickly set in.”

While financial burden did not top the list of challenges, more than six in 10 caregivers (66 per cent) strongly believed that increased financial support would significantly alleviate the strain on them and their families.

The study also found that there was a shared desire among caregivers for more specialised programmes, such as daycare centres and home personal care, which cater to those with dementia.

It also revealed that one in three people was still unfamiliar with the condition and its symptoms.

Dementia is an irreversible brain disorder that interferes with one’s ability to carry out daily activities, and refers to a range of dysfunctions such as severe memory loss, as well as mood and behavioural changes.

About 92,000 people are thought to be living with dementia in Singapore. This number is projected to increase to 152,000 by 2030.

Global data in recent years has also shown a rising trend of young onset dementia, which hits any time from age 30.

When her husband Andreas Wong, 52, was diagnosed with young onset dementia in July 2022, Madam Ann Jong, 45, became his primary caregiver.

“My husband’s mild headaches and shoulder pain from 2012 turned severe in 2015. The MRI (magnetic resonance imaging) and CT (computerised tomography) scans did not show anything unusual. It was not until 2019 that a scan at SGH (Singapore General Hospital) detected that his brain had shrunk, and it was suspected he might have dementia. It was only last year that he was properly diagnosed,” she said.

Since Mr Wong’s condition deteriorated, he can no longer express himself. Madam Jong has to second-guess him all the time, and he gets angry whenever he is not understood.

Initially, Madam Jong would feel upset and depressed whenever her husband turned aggressive, but she has since learnt to take things easy and not overreact. The biggest hurdle in the family remains the relationship between her husband and their 10-year-old son, she said.

“I am not too sure if my husband is able to recognise our son or that my husband just wants to (assert authority as) a father. He does not allow my son to make noise or talk, and would overreact whenever (my son) does,” Madam Jong said.

Getting the boy to fully understand what dementia is and why his father is in that situation also needed time. “But my son is willing to learn and helps me with chores like showering his dad or preparing his clothes prior to the bath,” Madam Jong added.

Grappling with the immense stress they endure daily, caregivers like Madam Jong are less likely to take care of themselves.

The study showed they tend to rely more on relaxation techniques and social support from peer groups to cope with their emotional burdens, and continue to struggle to prioritise adequate rest for their own well-being.

“It is important that caregivers surround themselves with fellow caregivers and people who can support them, be it family, friends, colleagues or professional care staff, who can lend them a listening ear and remind them about the importance of self-care,” Mr Foo said.

Mr Adrian Tan, co-founder of Care Connect, a not-for-profit community group founded by caregivers for caregivers, called them unsung heroes. He said they need to remember that self-care is not being selfish. “By loving and taking care of themselves, they become even stronger pillars of support for their loved ones.

“Together, caregivers can form a united front, creating a community where they find solace, strength and shared solutions to navigate the challenges of dementia care,” said Mr Tan, who is himself a caregiver to his mother.

He said Care Connect is launching a free caregiver support group called CaregiverCircle to help them “not only ease their own burdens, but also inspire others by creating a ripple effect of compassion and understanding in the caregiving world”.

In 2021, Dementia Singapore launched Cara, a mobile application that allows caregivers to leverage the collective efforts of the community.

“We have also partnered with the Municipal Services Office (MSO) to expand the reach of the app’s key services, such as (allowing) reports on missing persons with dementia filed through Cara to be broadcast on the MSO OneService app, increasing the chances of them being found,” Mr Foo said.

For respite, Madam Jong relies on weekly breakfast or coffee sessions with a good friend who lives nearby, and chats with her sisters and her son.

“I also turn to the members from the support groups at Dementia Singapore who are willing to help. I don’t feel alone any more,” she said.

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