In line with the recent Singapore Patient Conference 2016’s theme of “Activating Patients and Families” held at Tan Tock Seng Hospital on 28 October 2016, Families for Life Council Member, Ms Anita Fam shared about caregiving, and how one can activate families and communities for care. Ms Fam, who was the Conference’s plenary speaker, is also a Board Member of the National Healthcare Group (NHG), Vice President of National Council of Social Service (NCSS), as well as an advocate and active community volunteer.
During her talk, she quoted, “it has been said that in one's life, one will either have been a caregiver, is a caregiver, or will be a caregiver”, and this accentuated the on-going importance of a caregiver’s role. Which was why she believes one must understand the role a family has in supporting a patient/care recipient, and how in turn, the community can support the family in that role.
Caregivers Are The Red Thread
NCSS recently conducted a study which identified “family caregivers” as the ones playing a key role in their family member’s journey to recovery. Being the main care coordinators, or “red threads”, they tie together the fragmented pieces of their patient’s care across several touch points, such as clinicians, hospital stays, dealing with social service agencies, etc.
The study, based on 10 caregivers who handled complex care cases, and documented in NCSS’ publication “Who Cares”, gave Ms Fam 9 key insights into caregivers and their roles:
1. Caregivers tend to be in a survival mode as they have to constantly watch out for or respond to crisis situations. As a result, they do not have the capability nor time to see how best to improve their situation.
2. The quality of assistance caregivers receive depends on the knowledge and experience of the assistance providers they meet. Assistance received based on the financial situation instead of family dynamics, may result in some caregivers with poor family support becoming isolated, and not getting the help they really need.
3. Due to a lack of coordination and confusion on the types of caregiving/patient schemes available, caregivers do not fully understand the support provided by the social service sector. They often end up trying to figure things out and filling in the gaps on their own.
4. Caregivers who wish to take a break from the daily psychological and physical stress of caring for their loved ones are unable to find suitable avenues. Some of them may also be unaware of the need for self-care or may feel guilty when trying to do so.
5. The caregiving experience tends to redefine family relationships, where families are forced to continuously adapt, and share their roles and responsibilities. They struggle to trust others, or talk openly, safely and directly with each other about caregiving issues.
6. As the caregiving situation is unpredictable, many caregivers do not know how to plan for transitions in life stages and are unable to trust in any plans they might make as these will change.
7. Caregivers often lack the awareness, skills, and resources needed to boost their confidence as a caregiver and to help them be better long-term caregivers.
8. It is difficult for caregivers to view the caregiving journey as a positive and manageable experience, in the face of countless negative ones.
9. Caregivers prefer to shoulder their burdens alone as they think that they can get things done faster and more easily.
These insights resonate with Ms Fam as she too has personally experienced being a caregiver to both her parents. She realised that the needs of a caregiver are often overlooked as our healthcare system tends to focus mainly on the patient. This results in many of these caregivers suffering burnouts, experiencing symptoms, such as weight gain or weight loss, poor sleep, and so on. Many of these caregivers do not even know they are going through a burnout themselves!
That was why, according to a recent New York Times article, “Love and Burnout: Caregivers, Too, Need Care”, experts advised caregivers to build a team instead of bearing all of the responsibilities to prevent a burnout. The best team to build is, of course, starting with the family, where caregiving responsibilities can be shared. For example, one family member can help with the meal arrangements, while another can take care of all medical appointments.
The Caregiving Ecosystem
And that, Ms Fam asserted, is what the caregiving system is all about—having the care recipient being supported by his/her family, working as a team, and in turn, that loved one and his/her family should be supported by their community.
She went on to list several relevant services and resources in the community that are specially set up to support caregivers so that they will not feel that they are alone in their caregiving journey:
Types Of Caregivers’ Support And Resources
Voluntary Welfare Organisations (VWOs) that provide a platform for caregivers to connect with one another:
Caregiver support groups and programmes, specifically for caregivers of persons with mental illness:
CREST (Community Resource, Engagement and Support Team):
- Care Corner CREST @ Toa Payoh. Tel: 6258 6601
- Fei Yue CREST serving Serangoon, Hougang, Clementi, Queenstown, Holland Close, Tanglin Halt, Ghim Moh, Commonwealth, Choa Chu Kang, and Bukit Panjang. Tel: 6471 2022
- GoodLife! @ South East CREST serving primarily Marine Parade and its nearby estates. Tel: 6445 0570 (Mon–Fri, 9am–6pm)
- THK CREST @ Bedok serving Bedok, Bedok Reservoir, Chai Chee, and Kembangan. Tel: 6241 8171 (Mon–Thurs, 8.30am–6pm; Fri, 8.30am–5.30pm)
- THK CREST @ Central (Beo Crescent) serving Chin Swee, Banda, Jalan Kukoh, Beo Crescent, Indus, and Telok Blangah Crescent). Tel: 6589 0690 (Mon–Thurs, 8.30am–6pm; Fri, 8.30am–5.30pm)
- THK CREST @ North serving Yishun, Sembawang, Admiralty, Marsiling, and Woodlands. Tel: 6690 0110 (Mon–Thurs, 8.30am–6pm; Fri, 8.30am–5.30pm)
A Facebook community of caregivers who undergo through similar situations and face the same sets of challenges. Caregivers can share, and find help and support in a safe environment:
Other resources or forms of support for caregivers:
- Singapore Silver Pages (SSP). A one-stop portal by the Agency for Integrated Care (AIC), providing resources on community-based care, financial assistance and caregiving, and caregiver training courses.
- Caregivers Training Grant. Provides caregivers with an annual training grant of $200, regardless of income levels, to attend training to improve their card for their care recipient's physical and social-emotional needs.
- Financial assistance schemes that include (1) Eldershield, (2) the Assistive Technology (AT) Fund, which provides subsidies for Persons with Disabilities (PWDs) to acquire AT devices, (3) LTA Cares Fund, catering to the transport needs of working adults and students who are financially and physically disadvantaged, and (4) the Seniors' Mobility and Enabling Fund, which provides device, consumables, and transport subsidies.
- ComCare. Social assistance for low-income individuals and families.
- Foreign Domestic Worker (FDW) Grant. Gives low-income families $120 a month to hire an FDW and if the care recipient cannot perform at least 3 Activities of Daily Living (ADLs).
- FDW levy concession for PWDs. Enables families to pay a lower monthly levy for FDWs employed to look after a PWD.
- For PWDs. Special Needs Trust Company, including a Special Needs Savings Scheme
Tags: Caregiving /Elderly Care /Health Matters