Commentary: Dementia caregivers put on a brave front – while watching loved ones fade away
Behind every person that suffers from dementia are the caregivers whose hard work needed round the clock can have psychosocial and physical health effects, says Project We Forgot's Melissa Chan.
SINGAPORE: It is estimated that there are 78,000 persons above the age of 60 living with dementia in Singapore today. This number is expected to go beyond 100,000 by 2030, as Singapore grapples with a burgeoning ageing population. 100,000 isn’t merely a statistic.
Behind this number is a challenging story of the human condition, for stats belie the lives and faces affected by this condition, especially loved ones playing the role of caregivers.
Think about the mounting pressure faced by caregivers on a daily basis as they deal with cognitive and psychological symptoms so unpredictable that it is hard to put on a brave front while they watch their loved ones fade away.
THE ROAD TO DIAGNOSIS
People generally view dementia as a normal part of ageing, that as you age, memory is just an element that fades. On the contrary, as of recent, we see more young-onset cases – more individuals below 65 are being diagnosed with dementia.
It is often hard to grasp the condition of dementia. The brain is a complex matter. It is something we cannot touch or see physically.
The early signs of dementia are often misread as signs of depression. My father was on anti-depressants for over two years. It was not until he had a momentary lapse in memory and went missing on a business trip, that we realised it was more than just depression.
He was always staying at the same hotel and would meet his colleagues when he arrived. However, this time, he was nowhere to be found. His colleagues combed the area looking for him and eventually found him in a different hotel on the opposite end of the street.
He could recall that he needed to be on that street, but not where the exact hotel was, even though it was a routine business trip that he had went on for years. Consequently, we sent him to get tests and scans done before the doctors diagnosed him with young-onset dementia.
As a family, it was imperative that we took note of the signs and symptoms. More importantly, we learnt to trust our instincts. Likewise, it is absolutely vital for families who are affected to muster the courage to have conversations within the family about sensitive topics such as changes in a loved one’s memory or behaviour.
As soon as early signs become apparent, a timely diagnosis should be conducted. This is often a difficult step for a family to take because dementia can be a frightening word most of us never want to hear associated with our loved ones.
But an early diagnosis will give the family time to come to terms with the condition, plan and discuss the options on how to care for a loved one.
Start bringing topics like the Mental Capacity Act and the appointment of a Lasting Power of Attorney to the table early. Discuss how your loved one would like to be cared for when they can no longer make decisions on their own.
Don’t wait until the signs become too extreme to be ignored, as that can also mean that the condition has progressed.
DEMENTIA AND CAREGIVING ISN’T STRAIGHTFORWARD
When the issue of dementia hits home, families are often at a loss. Emotional stress might be exacerbated by a lack of clarity of a loved one’s condition, a lack of knowledge on finding credible information, or a lack of guidance on who to speak to for support.
Caregiving is hard work and can have psychosocial and physical health effects.
Caring for a loved one with dementia is a 24-7 duty. It requires constant deciphering of new and sometimes challenging behaviours exhibited by the individual they are caring for.
In addition to the primary stressors of caring such as the patient characteristics and care situation, work interference, financial strain, and sometimes family conflicts can add on as secondary stressors as well.
There is a certain stigma to being labelled a caregiver. Many individuals equate it to added responsibilities and the pressure to deliver based on their role. But caregiving is not tagged to a single person. Every individual in the family plays a role in the journey of caring - no matter big or small.
As a family member, one may be the bearer of information or solutions while another may be involved in the physical part of caring. We all play an integral role in the family structure to support one another in this caregiving journey.
HUMANISATION OF DEMENTIA AND A CAREGIVER’S JOURNEY
With dementia, there is an even greater need to shift toward a person-centred care approach. We cannot apply a one-size fits all solution because every individual is different.
For instance, character, preference, income level, and speed of progression differs from person to person. One may have different ways to address their emotional stress. Hence, caregiving has to be tailored according to an individual’s needs and preferences to establish a meaningful connection with a loved one.
Despite the lack of recreational services for persons with dementia, there are creative options.
We have heard of families sending their parents living with dementia for drumming classes because they used to enjoy drumming at a younger age. Some have also engaged with their father through Poker cards because that was what he enjoyed in his 20s - although he has not touched poker in the last 30 years.
The opportunities to connect are endless but only possible if you understand your loved one well.
Towards the later stages of my dad’s condition, we would often find him sitting and staring into space with the TV running in the background. He was there physically, but it felt like he was no longer present with us.
I thought that having to sit through the day listening to television advertisements must be painful. So, I created a mixtape and started playing all his favourite tunes - a combination of The Carpenters, The Beatles, and Elvis Presley. We saw him light up.
He wasn’t able to articulate the lyrics but was able to shake his hands and feet to the tune. Capturing that moment of clarity was beautiful, to know he was still there. All we needed to do was to find the right forms of engagement.
As caregivers, we can get caught up in the process of caring that we sometimes forget to take notice of the condition’s progression over time and how we can adapt our caregiving methods to those changes.
We don’t know what we don’t know. Researching feasible solutions that match what we need may often seem like a never-ending task. Sometimes, all we need is for someone to hold our hand, and point us to the right tools, methods, services, or activities.
STIGMA AND SUPPORT
Society's mindset is very fixated on the last stages of the condition. When you think of dementia, you often associate its features with the end stage. You think of an individual wandering and going missing, or someone who isn’t able to engage because of his cognitive decline.
We need to realise that people with dementia can live well, often for years. They are able to retain a sense of self-awareness and should not be defined exclusively by the condition.
If we can change the way people look at dementia, patient caregiving, and talk openly about these growing issues, we can make a big difference in people’s lives.
At the end of the day, it really is about being a more gracious society. It is about increasing awareness and empathy so that if you meet someone in the community who needs help, you aren’t afraid to step up to offer that extra hand.
Melissa Chan is the Founder of Project We Forgot, a network for caregivers to persons with dementia that provides peer support, knowledge resources, and access to relevant services in the journey of caring. She also serves on the steering committee for the World Young Leaders in Dementia Network, driving the development of innovative dementia solutions across disciplines and borders.