Covid-19 inflicts more stress on S'pore carers of people with dementia
Published on
13 Dec 2021
Published by
The Straits Times
SINGAPORE - These days, when Madam Chew, 62, goes out with her 64-year-old husband, it is only for a walk near their Housing Board block. And it is always a hurried affair because he would refuse to keep his mask on for long.
"I spend a lot of time persuading him to wear the mask before we go out," she said. "We will walk one round for 10 to 15 minutes a day."
The restrictions and changes in routine that have become the norm amidthe Covid-19 pandemic have made it harder for the former beautician to care for her husband, who has mild Alzheimer's disease, the most common form of dementia.
There are others like her who reported that a lack of in-person engagement activities had led to a deterioration in the condition of their charges, resulting in more stress for them.
This was captured in a study done last year by Dr Rachel Cheong at Khoo Teck Puat Hospital (KTPH), which demonstrated the need for non-Covid care support in a pandemic.
In Singapore, one in 10 people above the age of 60 has dementia, which is more common in older adults.
Madam Chew's husband, however, was diagnosed when he was just 53. She declined to give her full name and her husband's name, due to the stigma attached to the disease.
The couple have always been close, and used to go for daily taiji classes, followed by a leisurely breakfast. But that stopped when the pandemic hit.
Her husband also stopped going for engagement activities, including the occasional counselling sessions, at the hospital after these were halted.
Their lifestyle changed, and so did her husband. "I feel that his condition has deteriorated a lot since he started staying at home. He can't remember a lot of things now," Madam Chew told The Straits Times in Mandarin.
"He can't really answer me when I ask him questions now. Before this, his memory was poor, but he was alert... Now, he's muddle-headed," she said.
He used to comb the newspaper to try to look for work and kept busy at home, but not any more, she said. The change in him meant she had to be mindful not to arouse his suspicion by spending too long on the interview.
There is no cure for Alzheimer's disease. Apart from memory problems, persons with dementia can also have impaired reasoning, mood changes and more.
Being stuck at home is hard for them and their caregivers, said Mr Jason Foo, chief executive of Dementia Singapore.
"It can be stifling for persons with dementia who need social and mental interaction even more than others, and such huge changes to their daily routine may lead to disorientation, frustration, disappointment or, worse, escalate to physical or verbal aggression," he said.
"This in turn leads to more stress on the caregivers to manage these emotions and challenging behaviours."
The social service agency in specialised dementia care, which runs a helpline, received a high volume of calls last year. This year, the calls have dropped, possibly because caregiving demands have been somewhat reduced as the pandemic situation stabilised.
Nevertheless, Mr Foo said, some caregivers have reported mental distress during the pandemic.
"With the closure of many community care services and restrictions for care workers to conduct home visits, caregivers have expressed their helplessness in coping with the intensified caregiving. Some have even expressed suicidal thoughts," he added.
Dementia can rob people of their ability to articulate their feelings and this can cause them to act out their distress. They may refuse to go to bed, continue to try to leave the house despite being discouraged from doing so, or use vulgar language when held back from doing so, said Mr Foo.
Continued virtual engagement sessions are not enough going forward. They are a good substitute during the pandemic, but "physical engagements and in-person social interaction are still ideal for both persons with dementia and caregivers, and the multitude of virtual activities can be fatiguing", he said.
There have been new initiatives to better support caregivers of people living with dementia such as the Caregiver Support & Network programme, which was launched in July 2020.
More recently, in September this year, DementiaHub.SG, a one-stop resource portal that includes information on how to make a home more comfortable for persons with dementia, was launched.
In the same month, the National Neuroscience Institute and SingHealth also launched a Memory Care application, which contains checklists to monitor possible signs of cognitive decline and caregiver stress.
Dementia Singapore also just launched a mobile app called Cara, a pioneering dementia membership programme that helps to identify a person with dementia if that is needed.
Dr Cheong, a geriatric medicine consultant from KTPH who studied the emotional and physical impact of caring for loved ones with dementia during the pandemic last year, said they have put in more plans to help caregivers.
"We have stepped up our services and adapted the needs of our caregivers - for example, we conducted caregiver education/support talks via Zoom. We reach out to our patients through home visits (medical consultation, engagement activities, counselling, and caregivers' support)," she said.
There is also a helpline that persons with dementia or their caregivers can call to get advice on managing dementia symptoms.
From caring for loved ones who could not comprehend the various Covid restrictions to feeling exhausted from the constant care to the difficulties faced accessing support services, the stress felt by caregivers has been immense, Dr Cheong said.
Around 65 per cent of the 101 caregivers, who are mostly in their 50s, surveyed in her study said their stress worsened during the pandemic, and they expressed the need for respite support and engagement programmes for their charges.
The caregiver support group sessions and group counselling sessions at KTPH, which were put on hold during the pandemic, will resume in January next year.
As the high number of Covid-19 cases continues to put a strain on healthcare services, there is also a need to ensure that health services for non-Covid related care, such as for dementia, are still accessible, Dr Cheong said.
Having looked after Madam Chew's husband for the past six years, she said his condition had been very stable before the pandemic. "He actually worked for a short period and was able to participate in our early-stage dementia programmes," she added.
But at their first session after the circuit breaker last year, she noticed that he could not sit still at her clinic. "He also couldn't recognise me. It was just a drastic change."
He also had behavioural problems, with agitation, and needed more support. When that happened, she arranged for him to get counselling on the phone as well as online or home visits, to help him cope with his cognitive decline. She also adjusted his medication.
"When patients with dementia are aware of the decline in ability, they have this sense of a loss of identity. We counsel them in how to cope and also face the changes they go through in life," said Dr Cheong.
Recently, Madam Chew's husband has been asking to see his parents. When she tells him they have died, he would get upset and accuse her of having an "evil heart" for saying that.
It has been rough for Madam Chew, who gave up her job as a beautician to care for her husband, though the stress has been eased somewhat with help. The couple and their sons also recently hired a domestic helper to assist her.
It would be good if the hospital can resume some activities, she said.
As Singapore heads towards an endemic stage of living with Covid-19, it remains to be seen whether Omicron or another new variant will cause more uncertainty and difficulty.
For now, Madam Chew is focusing on living in the present.
Getting help
- Dementia Singapore's Helpline: 6377-0700
- TOUCH Care Line (for seniors, caregivers): 6804-6555
Source: The Straits Times © Singapore Press Holdings Limited. Reproduced with permission.
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