He wakes up at 6am in the morning, battling against her closing eyelids—a consequence of her sleep-deprived schedule. But he forces herself to be up, because in this hour before dawn is the only time he has with himself and when the world expects less from him. He checks his to-do list and the calendar, finding a laundry list of medication differing from morning to night, doctor’s appointment set that afternoon, and a medical bill for which he has to fork out soon. But these aren’t for him… they are for his spouse who is next to him, sound asleep in their bed. Just hours before, she was pacing around the house, experiencing ‘sundowning’—a set of symptom experienced by people living with dementia, where they have difficulty sleeping and experience confusion, agitation, and disorientation at night. He barely caught enough rest trying to ease her back to sleep. 

Informal caregiving occurs when “a loved one provides unpaid, ongoing assistance with activities of daily living for a person with chronic illness or disability” (Hale & Marshall, 2022). It could be caregiving for a child with special needs, a spouse with diabetes, a parent living with dementia, a sibling diagnosed with a mental health condition, and more. 

 

Their roles can include:

  • Helping with activities of daily living (ADLs): toileting, dressing, bathing, feeding, mobility, transferring
  • Helping with instrumental activities of daily living (iADLs): e.g. managing finances, cooking, cleaning, shopping, medication
  • Advocating and communicating their needs with healthcare providers or agencies

 

Caregiver Stress

Caregiving is associated with clinician-rated depression, higher levels of stress, lower levels of subjective well-being and physical health (Pinquart & Sorensen, 2003). In fact, caregivers are at higher risk of hospitalisation and chronic health problems themselves (Llanque et al., 2016). In Singapore, caregiver stress was exacerbated over COVID-19 and inflation, with “over four in 10 of them at risk of depression” (Lee, 2024).

The reality of informal caregiving is that the work never ceases, and many times the caregiver’s personal needs and wants come to a halt. And I know these because I carry each of these caregivers’ stories in my heart through my work as a social work student and intern. Once, a caregiver at an old age herself, broke down during our session because she felt incapable of caregiving full-time for her husband without losing sight of her own happiness and well-being. This is only a snapshot of the turmoil caregivers go through daily. This unpaid job comes with overwhelmingly complex emotions: guilt, grief, defeat, resentment, loneliness, yet also gratitude, pride, love for those they caregive.

Anticipatory grief is also common for caregivers who care for adults with a chronic and progressive illness, defined as grief that occurs before an impending loss. Meanwhile, caregivers who care for children or siblings with special needs often experience caregiver worry about their future (Balser et al., 2023)—What will happen to them when I pass on? Who will take care of them? 

Caregivers may also trudge through life with financial burdens weighing on their shoulders, work a job alongside caregiving, while bogged down by constant expectations to provide quality care, facing steep learning curves about what caregiving means… Caregiving puts people in positions where they are confronted on all fronts: physically, mentally, and emotionally.

 

We can identify and look out for signs of caregiver stress, which are “similar to those of stress and depression” (Cleveland Clinic, 2023): 

  1. Emotional and physical exhaustion.
  2. Withdrawal from friends, family and other loved ones.
  3. Loss of interest in activities previously enjoyed.
  4. Feeling hopeless and helpless.
  5. Changes in appetite and/or weight.
  6. Changes in sleep patterns.
  7. Unable to concentrate.
  8. Getting sick more often.
  9. Irritability, frustration or anger toward others.

 

A helpful questionnaire to use for assessing caregiver stress is the Zarit Burden Interview (Zarit, Reever, & Bach-Peterson, 1980). 

Giving Care to Our Caregivers

How can we support our caregivers?

  1. Emotional support from family and friends
  2. Understanding when caregivers ask for time off from certain responsibilities (personal and/or work)
  3. Supporting them in caregiving for a period of time (even for an hour or two) so they can take a break
  4. Reminding them to practice self care
  5. Looking at formal support such as home care, day care services or financial assistance
  6. Introducing caregiver support groups to them

What can self-care look like as a caregiver?

  1. Asking for help
  2. Relaxation techniques e.g. practising mindfulness
  3. Exercise regularly
  4. Eat well

Look around you and think deeply about people you have met in life. Are any of them caregivers, or face the possibility of becoming caregivers? Might you be a caregiver, or a recipient of it? Informal caregivers are key to our social fabric, yet often overlooked. It is time to change that and talk about the realities of caregiver stress.

 

Written By:

Heidi Ng

National University of Singapore

 

References:

Balser, S., DiPierro, G., Chaikin, C., Obeid, R., Berg, K., & Ishler, K. (2023). “That he won’t experience life like he should”: Exploring worries of family caregivers of transition-age autistic youth. SSRN. https://doi.org/10.2139/ssrn.4508350

Hale, D., & Marshall, K. (2022). Managing caregiver stress. Home Healthcare Now, 40(1), 51–51. https://doi.org/10.1097/nhh.0000000000001037

How to treat caregiver burnout. (2024, July 22). Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout

Lee, L. Y. (2023). Over 40% of caregivers at risk of depression amid challenging environment: Survey. The Straits Times.

Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250–267. https://doi.org/10.1037/0882-7974.18.2.250

Zarit, S. H., Reever, K. E., & Back-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655.