Whether you have been part of AKALAKA from the beginning or this is your first time hearing about us, you may be asking, who exactly are sibling caregivers? Am I a sibling caregiver? We hope to elucidate on this question and expand on the roles of sibling caregivers.

Key Takeaways:

  • There is no single definition or term to describe the diverse ways in which we care for our siblings with I/DD.
  • Being a sibling caregiver comes with challenges–financial, emotional, mental, and physical ones included–as well as joys, such as developing resilience and empathy.
  • We welcome all siblings, regardless of what part of the caregiving journey you are on!

The definition of a sibling caregiver is difficult to identify as its boundaries are fluid. Some in our community care for their siblings with intellectual and developmental disabilities (I/DD) on a daily basis. Depending on their sibling’s goals and support needs, the caregiver may help with home & community-based services including bathing, dressing, eating, and transport, as well as provide a supportive environment. Other caregivers may rarely see their siblings with I/DD but do “share the load.” They actively participate in medical decision-making, emotional support, or other caregiving tasks. Sociology, psychology, and disability research reflect this lack of clear definition. In a review of 29 studies about sibling caregivers, sociologist Meghan Burke found that most studies did not even define caregiving. The ones that did define it gave a variety of definitions. For example, tasks such as guardianship, residential arrangement, and companionship were considered part of the sibling caregiver role. In one study, co-residence helped to define sibling caregiving (Lee and Burke). We are a diverse group, so using one definition to identify sibling caregivers is nearly impossible.

It is important to note that even within our own community, the term “sibling caregiver” is just one of many terms used to identify siblings of individuals with I/DD. You may also hear the terms “care partner,” “caretaker,” “carer,” or “care provider,” among others. Although these terms have similar meanings, each has a slightly different connotation. For example, “sibling care partner” may invoke images of caring for someone with I/DD alongside a group of others, while “sibling caregiver” may invoke images of being the primary person providing care.

If you have a sibling with I/DD, which term do you relate to the most to describe yourself?

Because AKALAKA is a community of support and resources for siblings who care for siblings with I/DD, we recognize the real challenges that come with being a caregiver. By acknowledging these challenges, we are not saying that being a sibling caregiver is a harmful or otherwise negative experience. Rather, we are honest about what it means to be a caregiver so that we can better understand and support each other. Being a sibling caregiver can affect us emotionally, mentally, physically, and financially.

One of the clearest challenges of caregiving is the emotional/psychological effect. While this looks different for every sibling, research tells us siblings of those with I/DD have higher rates of anxiety and depression, as well as difficulty interacting with peers (Landman). For example, many siblings struggle with isolation, which is something that those in our own AKALAKA community have expressed. Some siblings experience the negative effects of “parentification,” i.e., growing up quickly and feeling responsible for their sibling(s) with I/DD. The parentification phenomenon can lead to distorted views of how much caretaking is normal in a friendship or relationship (Landman).

Another major challenge for caregivers of any type, including siblings, is financial stress. More than 1 in 6 Americans working either part-time or full-time are caregivers for an elderly or disabled relative or friend. The vast majority of these caregivers–at least 70%–have difficulties at work due to the stress of caregiving. These difficulties include having to rearrange work schedules, decrease work hours, and take unpaid leave to fulfill caregiving duties. Ultimately, these caregivers may lose wages, health insurance, or other benefits (Family Caregiver Alliance).

Despite these challenges, many sibling caregivers experience positive benefits from their caregiving roles. Adaptability, tolerance, and empathy are only a few of the characteristics that sibling caregivers share. Research about sibling caregivers has started to focus more on the positive rather than the negative outcomes (Landman). There is a true sense of personal growth and happiness that comes from being a sibling to someone with I/DD and watching them thrive in their own ways (Lee and Burke).

As we can see, there is a spectrum of what caregiving means and how it affects us. Sibling caregivers are a diverse group of people with unique roles and challenges. Here at AKALAKA, we welcome anyone who is or has been a sibling to an individual with I/DD, no matter what part of the journey you are facing and no matter what role you fill. Through education, peer matching, online seminars and social gatherings, we aim to directly address the challenges that sibling caregivers face.

If you have any thoughts that you would like to share about being a sibling caregiver, or if you are looking for support in your journey as a sibling, please reach out to us at hi@akalaka.org and join us. We look forward to connecting with you!

Two Siblings Connecting with Joy

“Caregiver Statistics: Work and Caregiving.” Family Caregiver Alliance, 2016, https://www.caregiver.org/resource/caregiver-statistics-work-and-caregiving/?via=research-policy,research-and-reports. Accessed 22 January 2022.

Landman, Keren. “Growing Up Alongside a Sibling With a Disability,” The New York Times, 11 May 2020, https://www.nytimes.com/2020/05/11/parenting/children-sibling-disability.html. Accessed 22 January 2022.

Lee, Chung eun and Burke, Meghan. “Caregiving Roles of Siblings of Adults with Intellectual and Developmental Disabilities: A Systematic Review.” Journal of Policy and Practice in Intellectual Disabilities, vol. 15, no. 3, 2018, pp.237-246, doi.org/10.1111/jppi.12246.