Background: Young carers have been defined as individuals under age 25 providing unpaid care to persons (usually family members) with chronic illness, disability, or cognitive impairment. They can be subdivided into youth caregivers (aged 18 or younger) and young adult caregivers (aged 19-22 or 19-24 depending on source). Approximately 1.6 million American youth and 2 million young adults provide unpaid care for those with serious illness, disability, or aging-related health problems (1). Young carers face unique developmental challenges including education, career exploration, relationship formation, frontal lobe brain development, and the pursuit of financial independence. This Fast Fact addresses the unique challenges young carers face when caring for patients with a serious illness. 

Demographics and impact: Young carers are a growing demographic. Most dedicate an average of 20 hours weekly to caregiving duties, often while balancing school, work, or other family responsibilities (2-4). The majority are female, and many find themselves in this role with little preparation or formal support. Common caregiving responsibilities include: 

• Medical care (wound care, monitoring systems).
• Medication management (organizing pills, ensuring adherence, monitoring side effects).
• Personal care (bathing, toileting, dressing).
• Basic household duties and care coordination (cooking, transporting to appointments).
• Patient advocacy and emotional support.
• Decision-making – while young adult caregivers may legally serve as a healthcare power of attorney or guardian, caregivers under 18 often participate in healthcare decisions informally, creating potential legal and ethical complexities around surrogate decision-making. 

Risk factors and health impact: While some young carers experience positive aspects of the caregiving role, the burden of caregiving has far-reaching consequences for their physical, mental, and social well-being and development (3). Research shows increased risks of anxiety and depression, often exceeding those of care recipients (5,6). Sleep disruption, academic challenges, financial hardships, and social isolation are common (7-9). Only one-third report being asked by healthcare providers about their needs and well-being both of which can directly affect the patient’s (3). 

Signs of caregiver burden: While clinicians primarily focus on their patient’s care, they should check in with young carers at each visit and remain alert for signs of strain (5-6, 10-12). Brief validated screening tools are available such as the Caregiver Strain Index (13). Additional signs of burden include: 

• Observable signs of fatigue during clinical visits (e.g., yawning, having difficulty concentrating).
• The young carer mentions an inability to balance school/work due to caregiving responsibilities.
• Taking on inappropriate levels of clinical responsibility beyond their developmental capacity.
• Limited engagement in their own activities (e.g., socializing, extracurricular activities).
• Expressing feelings of being overwhelmed or overstretched. 

Support strategies: While clinicians may not be able to directly treat young carers who are not their patients, they can help support them while maintaining appropriate professional boundaries.   

Assessment:  Ask about your patient’s support system and directly inquire if a young carer is involved. If there is a young carer involved in the patient’s care, assess the young carer’s understanding of their role and their care responsibilities.  Check in with their support structure.  Assess the patient and young carer’s understanding of the underlying health conditions and the anticipated illness trajectory.

Practical support:  Free educational resources are available online to improve competency for clinicians and caregivers (14). Additionally, the following strategies may help clinicians better support young carers: 

• Involve the help of licensed social workers in conducting comprehensive assessments and connecting families with appropriate resources and support services such as home care support options or other local support resources (e.g., respite care, adult day care services).
• Assess young carers’ sources of clinical information, including social media platforms and online communities. Provide guidance on evaluating credible sources of online health information.
• Provide anticipatory guidance about the patient’s future care needs and illness trajectory so the young carer can prepare for how their role may evolve over time.
• Use teach-back methods when educating young carers on skill-based activities.
• Determine which care tasks may be appropriate for young carers, and which could be handled better by other available adult caregivers.
• Connect young carers with peer support networks like The Children’s Society (15) and the American Association of Caregiving Youth (AACY) (16), to share experiences and reduce isolation.
• Encourage the young carer to establish a primary care clinician and prioritize their own health.
• Refer to psychological counseling services when appropriate.
• Provide work-related information about Family and Medical Leave Act (FMLA) as appropriate. 

Summary: The simultaneous navigation of emerging adulthood, vocational pursuits, relationships, and caregiving responsibilities creates unique developmental conflicts in young carers. Healthcare providers should recognize these challenges and facilitate developmentally appropriate support.  

References: 

1. Miller KEM, Hart JL, Useche Rosania M, Coe NB. Youth Caregivers of Adults in the United States: Prevalence and the Association Between Caregiving and Education. Demography. 2024 Jun 1;61(3):829-847.
2. Pilato J, Lamore K, Vioulac C, et al. What characterizes adolescent young carers? A multigroup comparative study. Child Care Health Dev. 2024;50(2):e13244.
3. National Alliance for Caregiving. Caregiving in the U.S. 2020. NAC and AARP Public Policy Institute. Published May 2020.
4. Chevrier B, Lamore K, Untas A, Dorard G. Young adult carers’ identification, characteristics, and support: a systematic review. Front Psychol. 2022;13:990257.
5. Hoyt MA, Mazza MC, Ahmad Z, et al. Sleep quality in young adult informal caregivers: understanding psychological and biological processes. Int J Behav Med. 2021;28(1):6-13.
6. Armstrong-Carter E, Siskowski C, Belkowitz J, et al. Child and adolescent caregiving for family: emotional, social, physical, and academic risk and individual differences. J Fam Psychol. 2022;36(8):1407-1417.
7. Becker S. Global perspectives on children’s unpaid caregiving in the family: research and policy on ‘young carers’ in the UK, Australia, the USA and Sub-Saharan Africa. Glob Soc Policy. 2007;7(1):23-50.
8. Kiran T. Keeping the front door open: ensuring access to primary care for all in Canada. CMAJ. 2022;194(48):E1655-E1656.
9. Children and Families Act 2014: Chapter 6. The Stationery Office; 2014.
10. Bjorgvinsdottir K, Halldorsdottir S. Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scand J Caring Sci. 2014;28(1):38-48.
11. Clay D, Connors C, Day N, et al. The Lives of Young Carers in England: Qualitative Report to Department for Education. Department of Education; 2016.
12. Brimblecombe N, Stevens M, Gowen S, et al. Understanding the unmet support needs of young and young adult carers and their families. PLoS One. 2024;19(9):e0310766.
13. Robinson BC, Validation of a Caregiver Strain Index. J Gerontol 1983; 38(3):344-8.
14. SC training. 20 Free Online Caregiver Courses with Certificates. Available at: Free Online Caregiver Courses with Certificates (2025) | SC Training Last accessed February 26, 2025.
15. The Childrens Society. Advice and support for young carers. Available at: Advice and support for young carers | The Children’s Society  Last accessed February 26, 2025.
16. American Association of Caregiving Youth. Available at: AACY – American Association of Caregiving Youth Last accessed February 26, 2025.

Authors’ Affiliations: Queen’s University Faculty of Health Sciences, Toronto, ON.
Conflicts of Interest: None to report.
Version History: first electronically published in July 2025; originally edited by Sean Marks MD.