Caring for loved ones with dementia:
A dance, a journey well-travelled together
A column contributed by Associate Professor Thang Leng Leng, Deputy Head of Department of Japanese Studies (NUS) and President of Gerontological Society of Singapore.
My beloved dad who was first diagnosed with dementia in December 2020 passed on in late January 2024 at the age of 87.
Perhaps it was the grief of an unexpected loss, I found myself staying away from the topic of caregiving since then. I am thankful to Mind Science Centre for this opportunity to pick up the topic again, beginning with a reflection on my journey as an adult child caregiver.
I believed I was more prepared as a caregiver compared with other adult children. As an anthropologist with research interest on caregiving – among other social topics on ageing – and having listened to and analysed many poignant experiences and stories from caregivers, I should have a better sense of what caring for elderly parents with dementia might look like in “real life”.
Indeed, I was more alert and accepting of the symptoms and behavioural changes of persons living with dementia (PLwD) and Alzheimer’s. The difficult situations my mum, my siblings and I met as caregivers were typical. Dad’s confusion and memory loss – forgetting that he has eaten his meals, forgetting his grandchildren and his domicile. Him being suspicious of people and getting agitated easily, sometimes shouting fiercely at us. His sundown syndrome.
But the sense of helplessness as we watched him decline and become less and less of the Dad we know was heart-wrenching. These are experiences that no amount of “knowing what real life looks like” would ever prepare us for.
I relied on various resources to support my caregiving journey. I leaned on timely advice shared by experienced caregiver friends and found solace in books like Dr Terry Hagrave’s Loving Your Parents When They Can No Longer Love You which helped me view the challenges more objectively and positively.
Dr Hagrave realistically points out that the caregiving journey could be a thankless task. It is marked by a rugged path that starts with a real need but ends in inevitable death. It is also one that could lead to caregiver burnout as anxiety (over financial security and issues of care) and physical toll affect health and diminish one’s social circle.
Yet, he emphasizes embracing caregiving as a journey of personal growth. He likens the journey to a dance – where the caregiver-elder parent pair move together in intimate communication, humility, and courageous trust.
However, care is rarely just a dance between two people. It is not only between the caregiver and the care recipient. As the need for round-the-clock care arises, the formulation of a feasible care plan requires the collective efforts of the entire family, sometimes extending beyond siblings to also include grandchildren.
In Singapore, it is common for families to hire foreign domestic helpers to assist in caregiving. While competent helpers could be pivotal in the family care teamwork, their presence could also create tension if not managed well.
For me, frankly, the most challenging thing is less about Dad, but more about “dancing” with Mum. My 80-plus-year-old Mum, used to living independently only with Dad, struggled with the thought of hiring a helper – a lived-in stranger – even as Dad’s ability to do daily activities declined. She finally relented when Dad expressed his preference to stay at home rather than moving to a nursing home.
It was an initial period of tense adjustment for all. Mum felt stressed because of various challenges she had especially with the first helper, from language barriers to a collection of small mismatches. The helper also felt uneasy and wanted to quit. When Dad’s sundown syndrome started three months later, the situation became almost unbearable. It took two more helper changes over seven months before things worked out, as Mum realized that the priority was finding someone competent who could take good care of Dad.
When Dad’s sundown syndrome became serious, we coped first with engaging a local caregiver to cover the night shift for a month until we found a suitable helper who could do it on a permanent basis. Our night-time helper from Myanmar was God-sent. She is experienced, professional, and patient; and communicated well with Dad in fluent Mandarin. The helpers soon became an integral part of the care team as we journeyed together to meet the needs of Dad while also supporting Mum.
In closing, here are a few lessons I have learned as an adult child involved with care:
- Living near each other facilitates caregiving. It is fortunate that my parents moved to live nearby two years before Dad’s onset of dementia. I wish we had planned better for all siblings to live close by.
- Developing a network of care, including geriatricians and community-based aged-care services near to home, is crucial. Community aged-care service staff provided valuable information, such as government schemes for financial support, respite services, information on caregiver support groups, and more.
- Respite and support are important for all parties. We sometimes focus on the parent who needs intensive care, at the expense of the other parent who is the primary caregiver. The foreign helpers who often are the ones providing physical care, also need enough rest and off time to avoid burnout.
- We overlook the emotional and communication needs of PLwD. Though they may find it hard to hold a conversation as their memories become fragmented, they are not necessarily cognitively disengaged. When Dad was deemed to have entered the severe stage, as he talked much less and spent much of the day with his eyes closed, I would try to capture the occasional moments when he was lucid. He would occasionally delight us with a sense of humour and words of wisdom, showing a glimpse of his old usual self.
To make caregiving a journey well-traveled together, let’s start by discovering the small moments of joy and connection with our loved ones. Focus on the dance.
This article was contributed by Associate Professor Thang Leng Leng, Deputy Head of Department of Japanese Studies (NUS) and President of Gerontological Society of Singapore.