Ms Jennifer Fan, Board Vice Chairman, Caregivers Alliance Limited (CAL)
Mr Tim Lee, Executive Director, CAL
So many distinguished Guests and Volunteers present today
Ladies and Gentlemen
1. Good afternoon, and thank you!But most especially to all the volunteers - you embraced the journey and do so wholeheartedly because that is what gives meaning to life. So thank you very much to all of you.
2. I am very happy to be here today to share this occasion with you, to celebrate the occasion with so many caregivers and volunteers.
3. But also importantly, to recognise the role that you play. Not only for the care recipients that each of you look after, but also for the role that you actually play in building caregiving in our society – a society which is ageing quickly. Our demographics show that today, we are at about 420,000 Singaporeans aged 65 and above. In 10 years’ time, that number will more than double. So it is not just the fact that we are ageing, but the rate at which ageing is happening will significantly change our demographic profile quickly, and caregiving needs will similarly change. That, together with a low total fertility rate, leading to family sizes are getting smaller. The combination of these two factors means that the care burden on each of us will only get more acute.
4. We believe that we should age in place. We should have our loved ones cared for in the community, for as long as possible, and for as much as possible. If you believe that is the way to go – which I do – then I think it is important that we nurture a system that better supports caregivers, better helps caregivers along their journey.
The Needs of Caregivers
5. Caring for loved ones in this journey is tough and long. You heard Jennifer mention that a journey is often defined by its destination. But in many cases, that destination is actually quite unknown. It is not only a long journey, but the trouble is that we often do not know just how long. And that itself is a challenge. Caregiving comes at significant personal costs, sacrifices to career, depletion of your own savings, and I think, very often, when the care recipient passes on, there is a sense of significant emptiness and the loss of a purpose in life. These are all things that we need to look at when we study what we can do better to help caregivers. In many cases, the caregivers also go through a journey that is often unpredictable, in the sense that whilst one needs rest and pit stops, but we do not know when those pit stops might be needed for the caregivers’ own mental and physical wellbeing. So respite care is equally important.
6. Over the last year or so, we have done a lot of consultations. We had many meetings with caregivers, volunteers, including sessions at CAL which I appreciate very much. That learning has fed into the programmes that we have designed and which we constantly look at whether it can be improved upon. A few of these discussions threw up very common themes amongst caregivers. I am sure you all know them, but I will quickly talk about them.
i) The first, of course is respite care, the ability to take a break not only at a time when the caregiver would like to, but also at a time when it is unexpected and unavoidable, such as when the caregiver himself or herself falls ill or has something urgent to attend to.
ii) Second, an infrastructure of knowledge and skills to provide care, a strong support system, something you can lean on, something you can count on, that you can check back on. Sometimes caregivers struggle, perhaps with their own personal guilt, when they do not know how to manage a situation better for their loved ones. They need support; a place to find answers and guidance, or sometimes just reassurance. So I think it behoves us to develop a system, strengthen it, resource it better, so that caregivers can find support more easily.
iii) Third, of course, is financial support to manage expenses, to look at the way in which we can anchor care better and more sustainably in the long term in the community. We should look at better financial resourcing so that caregivers will not be disincentivised to care at home.
iv) And finally, for caregivers who continue to be in the workforce, which as far as possible should be encouraged, that some kind of flexible work arrangements should be found.
7. All of these are features in the Caregiver Support Action Plan that we launched in February this year, covering care navigation, financial support, flexible workplace arrangements, caregiver respite, and also caregiver empowerment and training.
Providing caregivers respite in their caregiving journeys
8. Let me say a little bit about respite care, particularly for care recipients who suffer from mental health conditions which may impede the way they function normally, and also patients with dementia. Caregivers have shared with us, very consistently, that taking a break from their caregiving responsibilities from time to time prevents burn-out and that is endemic in everything we do. They need to take a break occasionally and recharge which would help them to move further in their caregiving journey, and to perform their roles even better. So we have enhanced the existing respite care services, as well as expand the options available to meet caregivers’ needs.
9. We would like to facilitate good respite options, and gradually build them up. Many of them do exist in the community, but ensuring that they are more commonly and easily available is itself a challenge, but one that we are taking on. It is also unpredictable, as I mentioned, such as when a caregiver might himself or herself need respite care, and something that needs to be looked at is how we can activate the respite care at short notice. So it is not just having it available, but having it available at short notice.
10. Conversely, caregivers might also need assistance at an occasion which is entirely predictable, such as when they look after patients with sleep disorders, or mental functions, which may be impeding the care recipients or someone who has dementia.
11. One of the new pilots that we have recently started on 1 December is the night respite care service. This is part of a series of initiatives that the Ministry of Health (MOH) is introducing to better support caregivers of persons with mental health conditions and dementia. Under the Caregiver Support Action Plan, we have already started giving caregiver outreach teams to provide social and emotional support to caregivers caring for persons with mental health conditions, and also dementia.
12. Caregiver support networks in Dementia Friendly Communities have also been expanded to provide platforms where caregivers of persons with dementia can interact and engage in activities. And often, it is that the community, however small, within the location of where the caregiver is operating, that helps to support the caregiver as well. In this context, the pilot for night respite care for caregivers – caring for seniors with dementia, some of whom have behavioural and sleep issues at night – is much needed because the caregiver also needs his or her rest in the evening. Under the Community Mental Health Masterplan, we introduced the Eldersit service to engage seniors with dementia at home, which in turn provides respite for caregivers when the loved ones are engaged. The Dementia Friends mobile app was also developed to provide easy access to information and resources of caregiving and dementia. And we hope this will better support the infrastructure of knowledge so that caregivers of such patients will know where to look and find the information. We will study this pilot in greater detail and we can see how we can better refine it, better apply it, and contextualise it to serve caregivers’ needs better.
Empowering caregivers in skills training and self-care
13. Let me now turn to skills training and self-care. On this, I would say that CAL is an important partner in this area. As part of the Action Plan, MOH and the Agency for Integrated Care (AIC) have worked very closely with CAL to set up caregiver community outreach teams to support caregivers. These are caregivers with, or are at-risk of, mental health conditions, through activities such as self-care and stress management, and also through linking them up with counselling services or other support groups. These teams also provide opportunities for caregivers to become caregiver peers, that means a mentor himself to another caregiver, which further empower themselves and helps others. Through this interaction as part of the mentor and mentee relationship, the caregiver peers learn new things, new skills, and new experiences. As of September 2019, three such teams have been set up, reaching out to over 2,700 individuals and supporting more than 260 caregivers.
Multiplying the impact
14. A key strength in CAL’s model of support is also bringing caregivers on board to build a strong network within the community. I think it is important to have peer support which provides learning, as well as solace and encouragement to each other. The Caregivers-to-Caregivers Training Programme (C2C) covers a holistic spectrum of topics, ranging from understanding brain functions and disorders, communicating empathically with care recipients, self-care and also, of course, advocacy against stigma. Sometimes, the way in which a community looks at caregiving and the care recipient can stigmatise the caregiver. That is the effort of the C2C, which tries to break this stigmatisation. Many caregivers who have undergone this programme have themselves gone on to become volunteers, advocates and ambassadors. This itself then generates a pool of individuals with their own lived experiences who are able to bring their skills and knowledge to others in similar situations.
15. One such example, though I am sure there are many others, but who is present in this room today, is Irene Goh. She is a C2C beneficiary who has herself paid it forward. She was in her sixties when she was taking care of her mother who suffered from cancer and later developed dementia. At the same time, she had to also care for her daughter who was recovering from bipolar disorder. All these, a combination of looking after her mother and daughter, put a toll on her own physical and mental wellbeing. After Irene started attending the C2C programme at Khoo Teck Puat Hospital, she began to feel more confident in caring for her mother, as well as caring for herself. She also applied what she learnt about the nature of psychiatric disorders and emotional management to better care for her own daughter, improving both their communication, as well as ultimately their relationship. Irene is now volunteering actively with CAL, supporting others in the community, sharing her own experience and journey, and her own learning points with others, with the knowledge she has gained from C2C.
16. Irene is with us here today. She is one of over 4,000 caregivers who have been trained through C2C to date. I think C2C as a programme, as an outreach, as a network of peer support, mentoring other caregivers is really a powerful way to multiply the support very quickly and site them within the community to support other caregivers. I encourage and, I too lend my voice to Jennifer’s encouragement earlier to join the C2C programme, to empower and contribute to a caring community and extend a stronger helping hand to building a network of caregivers.
17. The Caregiver Support Action Plan reflects our commitment to partner caregivers in their caregiving journeys. It is a very strong commitment from the government. One feature of the Caregiver Support Action Plan, which is different from the others, is the Home Caregiving Grant, where financial support is given to the caregiver for use for the care recipient in cash, in a way which the caregiver best determines for the use in the interest of the caregiving recipient. That is a break away from the usual model which is by subvention or by subsidies. Through this we hope encourage more caregiving at home.
18. We are rolling out some initiatives as pilot, and some in phases. But I would say it is by no means complete. There is a lot more we can do, a lot more that we should be doing and it is crucial that we keep up this momentum as we build on the strong stable of experience in the network of caregivers. We are constantly looking at how to improve and enhance our programmes and what we can do to expand the programmes and existing caregiving infrastructure and also more measures to better support caregivers in the community. One area that we will look at more closely will be caregivers of care recipients who have mental conditions which may impact on whether the can function independently. I think more can be done and we will study this more closely and more deeply and we will see what programmes we can initiate for them.
Closing
19. Finally, inclosing - today’s theme, “The Caregiving Journeying”, is particularly appropriate for the experience of many of us here, signalling that caregivers are not journeying this alone. It is not without struggles, but there will be plenty of support along the way and we hope we can add to your persistence as well.
20. It leaves me to thank all of you here today. I thank all the volunteers in caregiving, and thank all the caregivers tremendously, as I said right at the outset, you play an important role not only to the caregiving recipient that you look after, but for building a strong caregiving ecosystem in Singapore that will be what we need to anchor caregiver support, caregiving at home.
Thank you very much.