Richard Wee’s mother was diagnosed with dementia in 2019, when she was aged 82. She was a highly-independent woman who lived alone after her husband passed away and was able to buy groceries at the nearby market and occasionally ate at the coffee shops or hawker centre, too. She made her way around with her walking stick after having knee replacement surgery.
When she started getting a bit forgetful about doing chores, taking her medication and turning off home appliances, her children shared this information with her doctor during a routine check-up. This was when she was diagnosed with dementia.
The diagnosis was hard on her children as they had no idea where to turn to for support. This was coupled with the fact that they weren’t even sure what a dementia diagnosis entailed. She has five sons and a daughter, who were aged between 50 and 65 when she was diagnosed.
Currently, 1 in 10 people over the age of 60 in Singapore has dementia. By 2030, over 150,000 will have this illness. In addition to preparing society to see to the needs of dementia patients – such as introducing insurance plans specifically for this market – it’s also important to think about caregiving in this sphere.
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Taking on caregiving duties
The family was introduced to a medical social worker, who provided them with options for caregiving, helper support and daycare centre facilities. It was through her that they were informed about the Agency for Integrated Care (AIC) and the family was given financial advice and support too.
"AIC also helped us to enrol mum in a daycare centre where she did exercises and played cognitive games."
The siblings visited their mother daily at the daycare centre, while the domestic helper accompanied her and assisted with household chores and personal hygiene.
However, there were obstacles along the way. Richard’s mother rejected spending time at the daycare centre as well as the presence of the domestic helper. She also insisted on moving around by herself. She fractured her shoulder and arm when she tried to go to the toilet all by herself during the night and was hospitalised after surgery. Then she developed a very large bedsore.
"As siblings, we also acknowledged that taking care of mum is not just ONE person's job. We decided to divide the burden amongst ourselves, to ensure we have time for self-care."
Support for caregivers for dementia patients
The family approached AIC again when their mother’s domestic helper decided to leave. It was also through AIC that Richard was introduced to the Care Corner Caregiver Support programme, a safe space for caregivers of people living with dementia to share their caregiving experiences as well as learn from others with similar experiences.
"Through the able staff at Care Corner and the medical social worker, we learned about the facilities, finances and care advice for mum. We learned from the plight and experiences of fellow caregivers too."
"It acts as a lighthouse for caregivers to better provide for their loved ones. We learn and seek understanding from each other and we are not alone."
Joe Tan, Head, Integrated Case Management, Care Corner CREST @ Toa Payoh, identifies four common difficulties that caregivers of dementia patients face:
- Emotional and mental strain: this includes having to manage the changing and sometimes challenging behaviour of their loved ones, from forgetfulness to sudden loss of interest in doing things that they used to like, to disrupted sleep-wake cycles or getting lost in the community. All these cause caregivers to be anxious and more vigilant to look out for their loved ones for fear of that loved ones may hurt themselves. Some caregivers also highlight that caregiving can be a lonely and overwhelming journey, where the caregiving responsibilities rest on their shoulders. They also find it difficult to get alternative caregivers to relieve them or have respite. Over time, the emotional and mental strain takes its toll on the caregiver, resulting in poorer health and well-being.
- Financial burden: some caregivers had to give up their work or take on less to care for their loved ones with dementia. With reduced income and increased caregiving expenses for services, their savings gradually reduces. With limited family support, some worry about the financial burden it has on themselves and their own families.
- Not able to engage their loved ones meaningfully: dementia is a gradually-deteriorating disease with a trajectory is different for each individual. Persons with dementia may experience changes in their moods and interests; some caregivers find it difficult to engage with their loved ones meaningfully or experience frustration when communicating with them.
- Isolation: as caregiving can be a 24/7 task, caregivers often find themselves isolated and it's difficult to find time to care for themselves, have adequate rest or pursue their interests. They may also be unaware of the different resources/support available to them. Even so, some may not prioritise their own well-being. It is important for caregivers to find support, connect with others, fellow caregivers or professionals who can support them, listen to their concerns and journey alongside them in their caregiving journey.
The importance of self-care
Richard reveals that it’s not easy to accept your loved one being diagnosed with dementia. He recommends fellow caregivers to join a support group to share the experience, seeking help/advice and get moral support.
Another benefit is that support groups tend to organise educational sessions “to help us ride through the emotional upheavals and handle the emotional challenges appropriately”.
Richard also suggests taking time off for self-care, by connecting with people in personal social circle, exercising, picking up a hobby, going on a trip or, simply, doing nothing.
Credit: Care Corner
And if you’re a caregiver wanting to relate better with your loved one with dementia, Joe has the following advice:
- Understand what your loved one likes and build on this and create a conversation or activity to engage them.
- Find activities they like to do and places they like to go so that you can continue to create memories with your loved one.
- Empower them in different ways like assigning them simple tasks.
- Affirm your loved one.
- Be patient with your loved one, speak slowly and be gentle with your words.
- Maintain eye contact when speaking with them.
- Read up on dementia so as to better understand the condition.
The burden of caregiving for dementia patients often falls on family members.
Here are some resources caregivers can access for help:
Dementia Singapore
The Caregiver Support Group is where to go for more information on dementia care and to meet fellow caregivers. You’ll learn about relevant issues such as what is a lasting power of attorney and how to communicate better with people living with dementia patients.
The Social Service Agency also has a Caregiver Support and Network, where you can take a break from caregiving duties by nurturing your interests and learning new skills such as knitting and yoga.
Agency for Integrated Care
AIC offers caregiver training so you can pick up practical knowledge and skills to look after your loved one with dementia. You can take this course yourself or send your foreign domestic worker for it.
Remember Me
A dementia support group run by Singapore General Hospital and National Neuroscience Institute organise events held throughout the year.
Changi General Hospital
This support group meets monthly at the hospital’s Memory Café, to share their experiences and exchange tips.
Caregiving Welfare Association
The caregiver support group organises art therapy and mindfulness sessions for caregivers of seniors.
Care Corner Caregiver Support programme
Sessions are held in a hybrid format, both online and face-to-face. While face-to-face sessions are based in Toa Payoh, the programme is open to caregivers living anywhere in Singapore. The group also organises activities and outings.
