1.5: Understanding Caregiver Burden

Increased Caregiver Burden

You’ll hear the term caregiver burden throughout this work, so let’s unpack what it means. Caregiver burden refers to the strain or load experienced by someone providing care to another person. It can affect different areas of a caregiver’s life and is shaped by their individual caregiving experience. (Liu, Heffernan & Tan, 2020)

Caregiver burden has three important qualities:

It’s self-perceived

Burden is shaped by how the caregiver experiences and understands their own situation. Two young people with similar responsibilities may experience them very differently.

It’s multifaceted

Caregiving can affect different areas of a young person’s life, including their emotional, physical, social and developmental well-being.

It can shift over time

Caregiver burden isn’t static. It can increase or decrease as caregiving responsibilities, family circumstances and the young person’s own life change over time.

★ Powerhouse® Tip: Understanding burden doesn’t mean defining a young caregiver by it. While caregiver burden is a useful term for understanding the potential impact of caregiving, Powerhouse® takes a strengths-based approach focused on resilience. We recognize the challenges young caregivers may experience while also building on their strengths, relationships and coping skills.

When working directly with young caregivers, the focus is on understanding their experience and building resilience — not labelling their caregiving role as a burden.

What Can Influence Caregiver Burden?

The amount of care a young person provides is only one part of the picture. Their experience may also be influenced by:

  • Their age and stage of life, alongside their individual experiences and circumstances.
  • The type and level of caregiving responsibilities.
  • How long they have been providing care.
  • Changes in the health or needs of the person they support.
  • The support available within their family, school and community.
  • Other responsibilities in their life, including school, work and relationships.

Caregiver burden isn’t determined by caregiving hours alone. The same responsibilities can affect two young caregivers very differently.

What Can Caregiver Burden Look Like in a Young Person? 

Caregiver burden isn’t always immediately visible. A young caregiver may appear to be managing well while experiencing significant stress or emotional pressure.

Common experiences include:

  • Feeling like they’re on an “emotional rollercoaster”.
  • Balancing love, worry, frustration, guilt and pride at the same time.
  • Hiding or pushing down difficult emotions to keep going.
  • Feeling they need to stay strong for everyone else.
  • Tying their self-worth to being helpful or needed.
  • Feeling responsible for things outside of their control, such as a loved one’s health or family stress.
  • Blaming themselves when things don’t improve or go as planned.

Why this matters:

When young caregivers carry responsibilities or worries that feel beyond their control, stress can build over time and affect their well-being, confidence, relationships, school and other areas of their lives. Understanding caregiver burden helps us look beyond what a young caregiver does and consider how their caregiving role is affecting them.

What We See in Practice

YCA’s clinical work with young caregivers provides another window into how the emotional impact of caregiving can present.

Figure showing common areas of need identified through YCA’s clinical work with young caregivers.

Caregiver burden is individual and can change over time. Understanding the potential strain of caregiving helps us recognize where support may be needed, while keeping the focus on the young caregiver’s strengths and resilience.