Caring for a child with developmental disorders such as autism and intellectual disability can be a rewarding yet challenging experience. Dr Tay Kai Hong, Psychiatrist and Medical Director at Private Space Medical, sheds light on the risks and symptoms of caregiver stress and offers tips on how it can be managed.
The Realities of Chronic Caregiving
Caregiver stress can arise from caring for a child with developmental disorders, due to increased demands and challenges. Autism spectrum disorder and intellectual disability in children are developmental disorders that have been on the rise, partly due to better recognition of the conditions.
In Singapore, about 1.4% of all children under the age of four were diagnosed with varying degrees of developmental issues and needs. In 2014 alone, 4,400 children were diagnosed with developmental issues, representing a 76% increase since 2010. One in 150 children locally is diagnosed with autism.
Most parents do not plan on becoming “special parents.” Some go through a grieving process, struggling with self-stigma and societal stigma. Many grapple with feelings of shame and guilt, thinking they are to blame. Caregiving for the developmentally impaired is challenging, and many caregivers are “hidden patients” who toil behind the scenes unconditionally, at the expense of their own health.
Some experience recurrent grief each time they see their developmentally normal neighbours, nephews, and nieces achieve life milestones. This can result in feelings of denial, resentment, anger, and depression.
On top of psychological stress, the practical demands can be overwhelming. Since caregiving is a long-term endeavour, chronic stress can be damaging. If left unchecked, it can take a toll on social relationships, physical health, and emotional well-being, leading to caregiver burnout and depression.
Reasons for Caregiver Burnout
- Having to manage behavioural challenges such as meltdowns, aggression or self-harm behaviours
- Added financial burdens
- Feelings of shame and guilt leading to self-imposed social withdrawal and isolation
- Pre-existing tensions within the family, such as marital discord or disagreement on how to best manage the child
- Barriers in access to services such as specialised childcare, healthcare, education, enrichment and recreational services
- Caregiving roles can persist well into old age if the dependent does not attain the requisite skills for independent living
- Stigma and prejudice from relatives and the public – while physical disabilities are easy to detect and tend to elicit sympathy from the public, mental disabilities are “hidden” and manifest as odd behaviours. This may be misconstrued by the public as “naughty” behaviour due to “ineffective parenting”
Recognizing Caregiver Stress
- Feelings of resentment
- Constant fatigue, physical and emotional exhaustion
- Changes in sleep and appetite
- Changes in mood – feeling depressed or irritable
- Reduced interest and motivation in daily tasks, obligations or leisure activities
- Neglecting oneself physically, nutritionally and emotionally
- Withdrawing from social contact
- Feeling helpless and hopeless
- Feeling that there is nothing to live for
Caregiver stress comes and goes and fluctuates with circumstances. However, severe and protracted symptoms for more than a few weeks may indicate progression to Clinical Depression.
Clinically depressed individuals lose the ability to experience joy. Instead, they have constant feelings of dread, drudgery, hopelessness, and helplessness. Usual activities such as meals, sleep, work, leisure and caregiving become affected. In more severe cases, suicidal thoughts may emerge.
Overcoming Caregiver Stress
- Care for yourself first, for the same reason that airlines advise us to put on oxygen masks before attending to our dependents. Caregiving is a marathon, not a sprint. Caregivers need to pace themselves to provide sustainable care. Realise you have your own needs and make a conscious effort to meet them.
- Focus on the positives (emotions and experiences), not just on the challenges. Many caregivers see their journey as the most fulfilling and rewarding endeavour in their lives.
- Appreciate the strengths and unique attributes of the person with a developmental disability.
- Take a break – tap on support from the extended family. Find out about respite options.
- Band together and manage differing opinions within the family – it takes a village to raise a child.
- Consider family therapy by a certified family or parent-child therapist. This is available at Private Space Medical by our in-house therapist Ms Joanne Goh.
- Join a support group. Find comfort and support from other “special parents”. Share tips and resources. Find out about available services. Don’t be afraid to seek help.
- Recognise that most of the stigma may come from within – the concept of self-stigma. You may be surprised to discover that others are kinder and more accepting than you think. No one is judging as much as you think they are.
- Future care planning – this may be done with the help of professionals such as social workers and lawyers. Making care plans well in advance will reduce uncertainty and anxiety and provide peace of mind.
Seeking Help
In line with the nation’s 3rd Enabling Masterplan launched in 2017, Singapore has a comprehensive range of services to support persons with physical and mental disabilities, including special schools, Adult Disability Homes, psychiatric services, online portals (SG Enable, Autism Resource Centre), and employment support (E2C).
- Some Adult Disability Homes provide respite services to allow the rest of the family to go on a holiday to recharge. Self-care is an essential ingredient in providing sustainable care. There is no need to feel guilty about taking a break.
- Consult a social worker or counsellor at your Family Service Centre, or speak with a Medical Social Worker at a restructured hospital.
- Online portals such as SG Enable and Autism Resource Centre (ARC) provide information on a comprehensive range of support resources.
- E2C (Employability and Employment Centre), based at The Enabling Village and operated by ARC, provides assessment, training and support customised employment opportunities through collaboration with select employers. They receive enquiries through a hotline and via email.
At Private Space Medical, our psychiatrists, psychologists and therapists are well versed and skilled in the management of behavioural and emotional difficulties in the special needs population.
Our team comprises:
- Dr Tay Kai Hong, experienced and caring Psychiatrist with special interest in neurodiversity, ASD, ADHD and related challenges at different life stages.
- Dr Beron Tan and Ms Justine Xue, Clinical Psychologists with years of experience at KK Hospital.
- Mr Ryan Huang, Educational Psychologist with deep expertise in behavioural assessments and interventions.
- Ms Joanne Goh, certified Family, Couple and Parent-Child Therapist with vast experience in supporting couples, special families and children.
- Ms Eve Teo and Ms Siti Mariam, certified Art Therapists. Art therapy provides a safe and effective medium to deliver psychological and behavioural treatments in non-verbal, experiential and interactive ways.
If you are suffering from caregiver stress caring for a special child, youth or adult, don't hesitate to reach out. Prioritize self-care and remember that managing your stress is essential to providing sustainable care for your child, because caregiving is a marathon and not a sprint.
