Understanding the voluntary burden of caregiving

Caregiving is often done voluntarily and out of love by family members, but that doesn't mean they can't also feel resentment and frustration at the situation. (This image is human-created, AI-aided)

Caregiving is often an act of deep compassion and love.

Whether one is looking after an ageing parent, a chronically ill spouse or a child with special needs, the responsibilities involved can be profound and continuous.

While many caregivers willingly take on this role, the demands of caregiving can have significant consequences on their physical, emotional, social and financial well-being.

This prolonged strain is referred to as caregiver stress, and when it escalates over time, it may develop into what is commonly termed caregiver burden – a multifaceted issue that requires greater public recognition and support.

A widespread problem

Caregiver stress refers to the physical and emotional tension experienced by individuals who provide ongoing care to someone who is dependent due to illness, disability or age-related issues.

Over time, if this stress is not properly managed, it can evolve into caregiver burden, which encompasses both objective and subjective dimensions.

Objective caregiver burden involves tangible challenges such as financial strain, physical exhaustion and the disruption of one’s personal schedule.

Subjective caregiver burden, on the other hand, includes emotional and psychological toll, such as feelings of anxiety, guilt, sadness or frustration.

Caregiver burden is not just a personal issue; it is a growing public health concern that affects millions around the world.

Epidemiological data illustrates just how widespread this problem is.

According to the World Health Organization (WHO), more than one in six adults globally are informal caregivers.

In Asia, traditional family values often place caregiving responsibilities on the shoulders of women, especially daughters and daughters-in-law.

Numerous studies have shown that 40% to 70% of caregivers experience symptoms of depression, with about a quarter to half suffering from clinical depression.

Multiple challenges

The causes of caregiver stress are diverse and often interlinked.

One major contributing factor is the long-term and often unpredictable nature of caregiving.

Chronic illnesses such as dementia, cancer or stroke require sustained care over months, or even years, which can be physically draining and emotionally exhausting.

The emotional strain of witnessing a loved one’s decline, combined with the fear of making mistakes, can lead to persistent stress.

Additionally, many caregivers face physical demands such as lifting, feeding and bathing the care recipient – tasks that can be particularly taxing for older or less physically fit caregivers.

Social isolation further complicates the issue, as caregivers often have little time or energy to maintain their social lives, leading to feelings of loneliness.

Financial pressure is another common burden, especially when caregiving limits one’s ability to work full-time, or leads to increased out-of-pocket expenses for medical supplies and home modifications.

Moreover, when caregiving is done with little or no help from others, the stress becomes even more pronounced.

Vulnerable groups

Certain individuals are more vulnerable to developing caregiver burden.

Female caregivers, who statistically are more likely to assume caregiving roles, tend to experience higher levels of stress compared to their male counterparts.

Elderly caregivers are also at heightened risk, particularly when they are looking after a spouse and dealing with their own health challenges.

Those who lack adequate social support – whether from friends, family or the community – often feel isolated and overwhelmed.

The risk also increases when caring for individuals with cognitive impairments such as Alzheimer’s disease or severe mental illness.

This is as these conditions often require round-the-clock attention and present unique behavioural challenges such as physical and verbal assault.

Low-income caregivers face the double burden of physical and financial strain, while first-time caregivers may feel especially unprepared for the role, adding to their emotional stress.

Dangerous consequences

Often overlooked is the physical aspect of caregiving, where the caregiver needs to be fit enough to meet the physical needs of the patient. — Filepic

The symptoms of caregiver stress are both physical and psychological.

Physically, caregivers may experience fatigue, frequent headaches, muscle pain, digestive issues, sleep disturbances and weakened immune responses.

Emotionally, they may feel anxious, irritable, stressed or depressed.

Feelings of guilt, especially the internal conflict between love and resentment, are also common.

In severe cases, caregivers may withdraw socially, lose interest in activities they once enjoyed, or even develop unhealthy coping mechanisms such as alcohol and substance misuse.

The psychological toll can become so severe that some caregivers experience thoughts of self-harm or harm toward the care recipient, particularly in situations where support is lacking.

Unmanaged caregiver burden can lead to serious complications.

For caregivers, prolonged stress increases the risk of chronic health conditions such as hypertension (high blood pressure), diabetes, cardiovascular (heart) disease and clinical depression.

Burnout, characterised by complete emotional and physical exhaustion, may impair their ability to continue caregiving, potentially leading to crises for the entire household.

The effects extend beyond the caregiver to the person receiving care as well.

When caregivers are overwhelmed, the quality of care can suffer.

In extreme cases, neglect or even abuse may occur, not necessarily from malicious intent, but from the sheer weight of unmanaged stress and frustration.

Managing the issue

Effectively managing caregiver stress requires a holistic and proactive approach.

Education is a key first step.

Caregivers benefit greatly from understanding the medical conditions they are dealing with and learning practical caregiving skills.

This knowledge can alleviate fears and improve caregiving efficacy.

Emotional support, such as that provided through peer support groups or professional counselling, offers caregivers a space to share experiences, process emotions and learn from others facing similar challenges.

Respite care services, which provide temporary relief through adult daycare centres, in-home assistance or short-term institutional care, are vital in giving caregivers time to rest and recharge.

Time management skills can also help.

By learning to prioritise tasks, set realistic goals and ask for help, caregivers can regain a sense of control.

It is equally important for caregivers to look after their own health by maintaining a balanced diet, engaging in regular exercise, getting sufficient sleep and scheduling regular medical checkups.

Financial and legal planning can ease some of the burdens associated with caregiving.

Accessing government subsidies, insurance benefits and community resources can help offset some of the costs and ensure long-term sustainability.

Social workers and financial advisers can guide families through these complex processes.

Preventing the problem

Prevention of caregiver burden is equally critical and should start early. 

One important preventive measure is to involve other family members in the caregiving process as early as possible, thereby distributing the workload.

Establishing a strong support network of friends, neighbours and volunteers can also provide practical assistance and emotional comfort.

Advance care planning, including discussions about future healthcare preferences and legal documentation, reduces uncertainty during crises and allows for better- informed decisions.

Community-based resources such as caregiver training programmes, meal delivery services and transportation assistance should be promoted and made easily accessible.

Perhaps most importantly, caregivers must be encouraged to practice self-care and cultivate resilience.

Self-compassion, mindfulness and regular moments of rest are not luxuries, they are necessities.

In conclusion, caregiver stress and burden are significant public health concerns that affect not just individuals, but entire families and communities.

While caregiving is a deeply meaningful and often rewarding responsibility, it should not come at the cost of the caregiver’s own health and well-being.

Through increased awareness, systemic support and accessible interventions, it is possible to create an environment where caregivers are empowered, supported and valued.

As societies around the world continue to age, investing in the care of caregivers will become not only a moral imperative, but a social necessity.

Dr Tay Hui Sian is a consultant geriatrician. For more information, email [e-mail]. The information provided is for educational and communication purposes only, and should not be considered as medical advice. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this article. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.