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CNA
04-06-2025
- Health
- CNA
Commentary: ‘I felt abandoned' - caregivers of loved ones with dementia still feel so alone
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.
Straits Times
29-05-2025
- Health
- Straits Times
NNI, Lien Foundation roll out early palliative care for patients with neurological conditions
Palliative care patient Chia Shyh Shen (bottom) practising on a communication device with Tan Tock Seng Hospital staff on May 29. ST PHOTO: KUA CHEE SIONG SINGAPORE – The first time Mr Chia Shyh Shen experienced weakness in his right arm, he thought little of it. It was 2021, and the now-71-year-old was trying to change a ceiling light bulb at home. He could not hold his arm raised. At the time , he and his wife, Madam Tam Fee Chin, 70, attributed what they thought was temporary weakness to old age. But soon, M r Chia, who along with his wife was employed at a relative's gold jewellery shop in Johor Bahru, could not even lift a tray at work. Mr Chia was diagnosed in October 2021 with amyotrophic lateral sclerosis (ALS), t he most common type of motor neurone disease, which affects how nerve cells communicate with the muscles . In 2022, the Malaysian couple sought help in Singapore. There is no cure for ALS, which was formerly known as Lou Gehrig's disease. There are around 300 to 400 people living with ALS in Singapore. The condition is more common to individuals older than 50, and afflicts more men than women. Mr Chia is becoming weaker as his motor neurons – the nerve cells sending signals from the brain and spinal cord to the muscles, enabling movement – degenerate and die. He now has minimal mobility below the neck. And as his disease progresses, he will lose the ability to speak, eat and , finally, breathe. Mr Chia, however, remains cheerful, and is looking forward to future trips. His doctor at the National Neuroscience Institute@Tan Tock Seng Hospital, where Mr Chia is a patient, is helping to make sure this stays the case for as long as possible. While this may not sound like much , it reflects the transformation of care that is taking place there, particularly after NNI and the Lien Foundation rolled out in April 2024 a $6.8m five-year initiative to provide palliative care from diagnosis onwards. They call it NeuroPal, which stands for Neuropalliative Ecosystem of care. Prior to 2024, patients were referred to palliative care after experiencing advanced symptoms, said Dr Ang Kexin, a senior consultant at NNI, who has undergone training in palliative care. 'They came to me when they were bed bound or could not talk. Now they come earlier and can express their needs,' she said. 'We ask them about their hobbies... We anticipate their needs. We journey with them.' NNI and the Lien Foundation held a press conference on May 29 to announce NeuroPal and its aim of integrating palliative care into standard neurological care. It will go some way to help alleviate the suffering of patients living with ALS , dementia, Parkinson's disease and other complex brain, spine, nerve and muscle conditions. Palliative care patient Chia Shyh Shen (bottom) was diagnosed in October 2021 with amyotrophic lateral sclerosis, the most common type of motor neurone disease, which affects how nerve cells communicate with the muscles. ST PHOTO: KUA CHEE SIONG NeuroPal has screened nearly 2000 NNI patients with neurological conditions, of which 370 patients are given palliative care. NNI@SGH started the programme at one clinic in 2024. By the time NeuroPal ends in five years' time , it should have supported more than 3,600 NNI patients annually at TTSH and SGH, said NNI and the Lien Foundation. The hope is to expand it to other hospitals, and more community care partners. NNI specialists treat patients at seven hospitals across Singapore. With NeuroPal, patients are routinely screened for psychosocial issues and support can then be tailored for them, based on their distress levels. Associate Professor Adeline Ng, Senior Consultant, Neurology, NNI and NeuroPal co-lead, said they use a self-reported short questionnaire called the Distress Thermometer to understand what matters most to the patients. The initiative pumps funding into training and hiring more palliative care staff, including two psychologists, three medical social workers, four nurses and others. Palliative care patient Chia Shyh Shen (bottom) with Tan Tock Seng hospital staff (from centre-left) National Neuroscience Institute Senior Consultant Dr Ang Kexin, Principal Occupational Therapist Huang Huixin and Senior Speech Therapist Yong Xing Tong at the Centre for Geriatric Medicine, in Tan Tock Seng Hospital, on May 29. ST PHOTO: KUA CHEE SIONG Lien Foundation's CEO Lee Poh Wah said during the press conference that with the initiative, they want to dismantle the misconception that palliative care is only for the end of life. 'It's naive to frame neurological diseases as a battle to be fought at all costs... I think we need a more humane and humble approach to healthcare, one that acknowledges the complexities of living with serious illness.' Palliative care aims to help relieve the symptoms and stress of serious illness and support caregivers, and it can help to reduce unnecessary suffering when it is given early in the disease trajectory, he said. Neurological conditions often unfold as a long journey of progressive decline, where a patient suffers emotional distress and is gradually robbed of his or her independence. Among those who receive palliative care, 60 per cent are cancer patients, but cancer only accounts for 26 per cent of all deaths, he said. The hope is to train more healthcare professionals to deliver general palliative care, he added. Associate Professor David Low, Deputy CEO (Clinical), NNI, told the media that people often think of palliative care as something that is given at the terminal stages of life. But for neurological conditions, the care can start early, for instance, when a person is diagnosed with motor neuron disease. ALS patients typically live for around 3 to 5 years, but there are a lot of outliers, and Mr Chia is one of them, said Dr Ang. To help improve his quality of life, the NeuroPal team at NNI@TTSH regularly monitor him and recommend solutions to help him cope with the inevitable changes that the disease brings. They recently let him try out an eye-tracking device called Tobii, which will enable him to communicate with others or pick out videos to watch, and a tilted wheelchair that can support his neck. 'We are future-proofing him. With Tobii, he can learn it faster now because he can still communicate verbally,' Dr Ang said. With that wheelchair, should he opt to buy it, he can travel in greater comfort, she added. Join ST's WhatsApp Channel and get the latest news and must-reads.
