Commentary: ‘I felt abandoned' - caregivers of loved ones with dementia still feel so alone

CNA

2 days ago

SINGAPORE: When my grandfather was diagnosed with vascular dementia in the 1990s, my family became caregivers overnight. Back then, there were no hotlines to call, no daycare centres to drop him off at, no respite help to take over when we were exhausted.
Today, such programmes exist and offer much-needed relief and education. Yet, these are not lasting solutions when families still feel like they face this isolating journey with little support.
Take Mr Lim*, who after his father's dementia diagnosis, received help from the Post-Diagnostic Support (PDS) programme. He had access to a dedicated caseworker, home visits by a multidisciplinary team and personalised care plans.
This was a remarkable S$2.6 million initiative by the Lien Foundation and Dementia Singapore, launched in 2020 to help newly diagnosed families, However, support lasts only for a maximum of 12 months, for a disease marked by mid- to long-term decline.
'The caseworker said I'd have to re-apply with the hospital again but we are not a priority anymore. I felt abandoned,' he told me. His father's dementia worsened after support ended.
There are no good choices for families: re-navigate hospital referrals to apply for support and wait with uncertainty or shoulder caregiving alone.
CAREGIVING LOAD ONLY ESCALATES
Dementia is not static; mild cases transition to moderate or severe, demanding escalation of care. The challenges from diagnosis of the reality of long-term caregiving only increase with time.
My grandfather, a police station inspector whose career demanded sharp wits and physical vigour, faced a cruel decline after retirement and a stroke. Kept homebound for safety, his active life dwindled to watching TV all day.
Over the course of 10 years, dementia robbed him of speech, medications sedated him, his muscles weakened and left him wheelchair-bound, then bedridden with bedsores and reliant on nasal tube feeding.
Families toil relentlessly through the pain of grieving someone still alive.
All this takes a toll on mental health: 74 per cent of caregivers grapple with overwhelming responsibilities – managing aggression, preventing falls, coping with grief – as revealed by a 2024 joint study by Milieu Insights and Dementia Singapore.
Support channels tend to be disjointed. Family and friends are well-meaning but are limited by knowledge, time and emotional strain.
Caregivers often turn to public hospitals for practical guidance on managing dementia's complexities. This includes phone consultations that typically last 15 to 20 minutes with nurses at dementia clinics or wards. Non-urgent support requiring doctor's consultation can face longer waiting time, leaving caregivers stranded.
Social organisations and support groups provide critical resources but face capacity constraints and come with a cost. They also conduct regular workshops on dementia, but as one caregiver lamented to me: 'After the workshop, we're left with paper printouts – not ongoing follow-up.'
The PDS programme's four-year target of assisting 1,400 clients and 1,300 caregivers over four years is a drop in the ocean when over 152,000 are projected to live with dementia by 2030. This underscores a sobering reality: Even well-funded interventions struggle to match the scale of need.
Hotline support is closed after office hours. But what about the nights, weekends, and public holidays? Caregiving doesn't take a break.
Compare this to Australia's National Dementia Helpline, staffed 24/7 by trained professionals, or the United Kingdom's Admiral Nurses, who journey with families for years. Both nations treat dementia care as continuous education, counselling and crisis prevention – not episodic triage.
A CALL FOR SYSTEMIC REINVENTION
The gap for caregivers lies in continuity and fragmented coordination. Transforming dementia care in Singapore will require a shift to a more proactive integrated ecosystem. Here are three suggestions:
First, invest in lifelong care teams – a permanent support model that pairs families with nurses and social workers who track disease progression. Continuous, evolving support could preempt crises, like falls at home or caregiver burnout.
Second, create seamless care pathways. Existing resources can be siloed and time-limited, which is incompatible with the increasing level and cost of caregiving when those with dementia inevitably deteriorate.
Ensuring more cross-sector collaboration between hospitals, social agencies and community groups could help make the most of finite resources.
Third, apply technology thoughtfully: Artificial Intelligence (AI) tools, like an AI hotline agent trained on caregiver interactions could answer non-emergency queries (How to manage refusal to shower?), making care support accessible at all times, thereby reducing reliance on overwhelmed hotlines.
MEETING CAREGIVERS WHERE THEY ARE
Caregivers today – typically spanning ages 33 to 55, a generation balancing careers, parenting and caregiving – are a digital-first generation.
They spend 2 hours and 2 minutes daily according to a local study, on platforms like TikTok, Instagram and Facebook, seeking answers in stolen moments between work and caregiving.
Yet, support systems cling to analog methods: pamphlets, dense websites and bureaucratic loops.
Take Helen*, whose father was diagnosed last year. 'After the diagnosis, the nurse gave us a 45-minute overview of dementia, handed a stack of pamphlets and said, 'Approach AIC (Agency for Integrated Care) for further help.'
But when we did, the caseworker just sent more website links to read. We felt shuffled and overwhelmed with information, not supported,' she shared with me.
Singapore's robust resources are rich in content but poorly adapted to modern consumption. Their reliance on lengthy PDFs and static web pages clashes with the needs of a generation that scrolls, swipes, and searches for instant answers.
Imagine AI chatbots guiding users through AIC's respite care applications via WhatsApp, voice assistants 'talking' to users through symptom guides in English, Malay, Tamil or Mandarin, or even Generative AI summarising self-care tips into 30-second TikTok scripts.
Compare this to Dementia UK's Instagram, which transforms clinical guidelines into Instagram Reels like '5 Steps After Diagnosis' and carousel posts like 'Is It Dementia or Normal Ageing?' – bite-sized, visually engaging content that meets caregivers mid-scroll.
While we do not know how much this moves the needle for UK families, this approach at least taps into modern habits to reach families where they are.
Singapore need not reinvent the wheel – only repurpose its existing resources into formats that resonate with a generation relearning how to seek answers.
Singapore's dementia care gap deserves more than temporary fixes. Every averted crisis – broken hip from a fall, medication overdose – preserves independence for persons living with dementia and saves families long-term costs.
While initiatives like PDS, daycare centres and hotlines are vital steps forward, systemic change demands having proactive ecosystems.