'It can be a lot for a person to bear': Dealing with dementia during the circuit breaker
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SINGAPORE: While queuing to make a purchase at the wet market, 53-year-old Emily Ong was brusquely told off by a fellow shopper.
"I forgot to keep the safe distance and the lady was very angry that I came so near to her", said Ms Ong. "She scolded me and said: 'Are you uneducated? During this time, we cannot stand so near to each other!'
"After she blew up like that and gave me that very angry, pissed-off face - only then I realised that I was standing too close.”
But this wasn't because of a random slip of memory.
Ms Ong has young onset dementia, which affects people under the age of 65. For individuals and caregivers alike, the COVID-19 pandemic has brought with it new rules to observe, new routines to follow and new challenges to overcome.
While Ms Ong is able to understand why measures such as safe distancing are necessary, due to her condition she sometimes forgets the rules.
"I do frequently forget that I need to wear a mask, and then when I wear a mask, I'm not supposed to touch the front side of my mask," Ms Ong explained. "I have to be reminded by my family members and that's one reason why I don't want to go out (much) because I will not be able to remember things like social distancing ... These (things) are very new for us.
"Let's say I go to my neighbourhood supermarket for half an hour to get something, I will not be able to remember that I need to maintain social distancing by the time I come to the cashier."
This is a similar struggle that Mr Steven Lau faces, said his caregiver and wife Ms Wong Lai Quen.
On the rare occasions where the both of them leave home to run errands, Mr Lau often forgets the need to observe safe distancing measures when attempting to interact with others.
"He likes to say hi and bye and chit-chat, and he forgets about safe distancing. He would want to shake hands with people, to go near to people and people would move away from him. I will have to pull him away and tell him that there's safe distancing," Ms Wong said.
"Safe distancing can be a challenge, because he cannot remember so he will go near the person and they will feel: 'Why are you coming near me? Don't you understand safe distancing?'
"But he can't remember. He isn't aware even after six weeks."
'I HAVE TO BE QUITE GENTLE'
For caregivers such as Ms Wong, there is a need to explain to their loved ones why they are no longer able to go out of the house.
"I have to be quite gentle and rephrase to tell him that it's COVID-19 and there's a circuit breaker," said Ms Wong, whose husband has Alzheimer's and vascular dementia. "He will understand, then after a while he will forget. When he wants to go out again, I have to repeat this again."
As part of circuit breaker measures, individuals should only leave the house for essential needs. Given Ms Ong does not go out as often as in the past, this has taken a toll on her body as well.
"Not being able to go out under the sun is affecting me, and my body is not able to tell the time," she explained. "At night, I am not able to fall asleep and stay asleep. I still keep to the routine of going to bed at 10pm as usual but the problem is that now my body is not able to tell that its time to go to sleep. The brain is not able to come to a relaxed mode ... Now I will wake up at 3am.
"When you look outside from your windows, you can see sunlight, but that is very different from when you go out and have the natural feeling under the sun," she added. "A lot of our understanding and comprehending have to come through our other senses. So now, we cannot count a lot on our senses because we are at home."
Where she would previously have left the house about four times a week, Ms Ong now only goes out about once a week.
"I don't feel comfortable going to the park and things like that, because I might get lost," she added. "Once I go to the park, it's very different, there are a lot of things that I need to look out for."
Having a fixed routine is also important for individuals with dementia like Ms Ong, and they also face issues adapting to the new normal.
"A routine is more than a timetable for us ... It makes us feel comfortable and confident because we know what to expect. The predictability of a routine helps to make us not so anxious," said Ms Ong. "But now because of the circuit breaker, a lot of the things that I have been doing ... are affected and that disruption creates havoc in my system."
But having been advised by her family members to stay at home more, Ms Ong added that she has been coping better.
"I had to come up with a temporary routine which has some of the usual components - because familiarity is very important to us - so I will find things that allow me to be engaged and purposeful," added Ms Ong. "That transition was very important."
It is not uncommon for persons with dementia to exhibit "sudden mood changes, anxiety and discomfort," said the Agency for Integrated Care (AIC), in response to queries from CNA.
Set up by the Ministry of Health, the AIC oversees, coordinates and facilitates all efforts in care integration.
"This could be due to factors such as the changes to their routine, anxiousness when seeing others wearing masks or even physical discomfort due to dehydration and health issues," added AIC. "In some instances, persons with dementia may also exhibit tendencies to wander outside the safety of their home and unknowingly flout COVID-19 measures."
A 'STIFLING' EXPERIENCE
In response to queries from CNA, Alzheimer's Disease Association (ADA) CEO Jason Foo agreed that individuals with dementia face a number of challenges during the circuit breaker period.
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"This period of enhanced safe-distancing measures can be a difficult time for persons with dementia," he said. "On regular days, some persons with dementia are already isolating themselves from their families and friends because of feelings of inadequacy and rejection. We often encourage them to have as much social interaction as possible so as to lead a purposeful and meaningful life.
"However, during this time of strict safe-distancing measures, they are encouraged to stay at home instead. It is already difficult for people in general to stay cooped-up at home for 58 days (Apr 7 to Jun 1). Imagine how stifling it will be for persons with dementia who need that social and mental interaction even more than others."
In addition, there is also added stress on caregivers who may need to manage "expressions of unmet needs" from their loved ones with dementia, explained Mr Foo.
"Caregivers also need to constantly think of ways to keep their loved ones with dementia active and engaged through creative and cognitively stimulating games, puzzles and TV shows," he said. "Some caregivers may need to juggle multiple tasks (working from home, children’s home-based learning, daily meals etc) on top of caring for their loved ones with dementia. It can be a lot for a person to bear."
Given that Ms Wong is now working from home, she has to balance between work meetings and taking care of her husband.
"He would come and talk to me as though I am available at any time," said Ms Wong. "So if I don't talk to him or respond to him, he gets very angry ... This can be a bit challenging. So when I have meetings with my colleagues I will tell them to continue talking first and I'll go and make sure that he is paid attention to and he is okay."
With the current circuit breaker measures in place, Mr George Chong, who has young onset dementia, is no longer able to attend day care, said his caregiver and wife Ms Lynn Leng.
"He's at home for the whole day so it's more stressful for us," she said. "But the good thing is that all of us are at home so we take turns to manage ... When he goes to day care, he gets to see different people, he'll do different things. But (now) having to see the same people, and he cannot understand what's going on."
Along with her sons, Ms Leng has worked out a schedule to take care of her husband's daily needs. "We have found our momentum," she added.
The AIC's integrated community mental health network comprise outreach teams, community intervention teams, specialist-led teams and partners who provide care and support for clients and caregivers in the community, it said.
"Due to the circuit breaker measures, the community outreach teams and community intervention teams are using alternative methods such as phone calls to support their clients," said AIC. "For high-risk clients who seek require urgent assistance, the community intervention teams will still conduct home visits with precautionary measures in place."
Among other measures, AIC is also developing three activity booklets aimed at engaging seniors including individuals with dementia who are at home.
"With caregivers guiding and engaging the persons with dementia, these activities are good for social interaction, cognitive stimulation and recreational purposes," said AIC.
The booklets contain arts-based activities that can be downloaded and printed as activity sheets for them to do with the assistance of caregivers and loved ones. The booklets also contain short messages on key COVID-19 messages.
The first book is available for download, the second will be released on May 18 and the third at the end of June.
The ADA is also helping both individuals with dementia and their caregivers overcome the challenges posed during the circuit breaker. For one, it has moved some programmes and activities from various of its centres online.
This includes a series of pre-recorded "Stay-Home Workout" videos, as well as daily 1-hour live video calls for ADA staff to talk to clients. The association has also loaned tablets to those who have no access to mobile devices.
Mr Lau has been able to participate in activities such as photography sessions remotely, said Ms Wong. This has helped keep him occupied, along with reading newspapers and watching war movies on Netflix.
"He enjoyed the photography because the attendees are friends that he got to know at events at ADA," said Ms Wong.
The ADA's caregiver support team has been able to keep on offering guidance and support to caregivers over the phone via a dedicated helpline.
Along with the Agency for Integrated Care (AIC), the ADA announced a new initiative last week to help those with dementia who may inadvertently break circuit breaker measures.
Called SPOC-19, or ‘Support for Persons living with dementia Over the COVID-19 period’, it contains three ‘identifiers’ that individuals with dementia and their caregivers can register for. This will allow members of the public or ground enforcement authorities to easily recognise individuals with dementia and offer appropriate assistance.
One of these three 'identifiers' is a new memo from the ADA which states the individual and caregiver's names, and explains that the individual may lack the ability to adhere circuit breaker measures. While this does not give the memo holder immunity, it allows enforcement officers to be aware of the individual's condition, said ADA and AIC.
"In general, the public needs to have more education on this hidden disability of dementia, because unless you have very severe dementia, most people will not be able to identify that you have dementia,” said Ms Ong.
When asked why she did not respond to explain her condition during her unpleasant encounter at the wet market, she explained: "I just said I was sorry.
“I felt at that point of time that there was no point for me to explain, especially since I'm a young onset dementia patient, people will not believe that I have dementia."
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