Parenting Pointers: Sibling Caregivers

Did you know that of the 65 million caregivers in the United States today, many are the primary care provider for an adult brother or sister who lives with intellectual, developmental or physical disability? Yet far more attention is typically paid to caregivers in the role of spouse, parent or adult child, while we don’t hear much about the sibling caregiver. 

Twenty-three percent of adults are already the primary caregiver for their adult brother or sister with a disability and nearly one third expect to assume this role in the future. That’s why Easter Seals along with support from their national corporate partner Mass Mutual, conducted the Siblings Study – to call attention to the experiences of caregivers as well as the services and supports families need. By and large, most respondents convey their sibling with a disability had a positive and unique impact on their life – and even the lives of their own children. But, they have also experienced the very real, often challenging negative effects of caregiving as 30% of primary caregivers say they don’t get support— emotional, physical and financial help—from friends and family, while 60% wish they knew more about how to plan for their sibling’s care and finances.

Easter Seals will use these findings to raise awareness of and advocate for the life-long services and supports families and caregivers desperately need—working to lessen disparities and bridge the gap for people living with developmental disabilities across the country.

I had a chance to interview Lisa Peters-Beumer, MPH Assistant Vice-President Adult and Senior Services Easter Seals headquarters. at Easter Seals about sibling caregivers.

Why is it important to recognize the role of sibling caregiver?

Among the 65 million caregivers today, attention is often paid to spouses, parents and adult children—but not much to sibling caregivers. It is important that we understand the experiences of sibling caregivers as well as the planning, services and supports that they need. Individuals with intellectual and developmental disabilities are living longer than they have in the past. As individuals age in their communities, they frequently live longer than their parents and siblings often take on a caregiving role—sometimes overnight… one day a brother or sister and the next a caregiver-- in addition to their own work and immediate family issues. A sibling one day becomes financial manager, care coordinator and primary support system the next--often later in life. With some planning and support, we can help make this a much smoother transition. That’s why Easter Seals along with support from their national corporate partner Mass Mutual, conducted the Siblings Study.

How is being a sibling caregiver different from being a caregiver for one's parents?

Our sibling relationships are often our longest lasting relationships—a lifelong bond. So often our siblings are our friends and advocates, but few of us expect them to be our caregivers. However, twenty-three percent of respondents to the Easter Seals Siblings Study are already the primary caregiver for their adult brother or sister with a disability and nearly 1/3 expect to assume this role in the future.

Most indicated that their sibling with a disability had a positive and unique impact on their life – and even the lives of their own children. But, they have also experienced the very real, often challenging negative effects of caregiving as 30% of primary caregivers say they don’t get support – emotional, physical and financial help – from friends and family, while 60% wish they knew more about how to plan for their sibling’s care and finances.

      What types of advocacy will Easter Seals do as a result of this study?

Easter Seals will use the Sibling Study findings to continue advocating for the needs of caregivers as well as the unique planning, support and needs of siblings throughout the lifespan. Easter Seals will raise awareness of and advocate for the life-long services and supports families and caregivers desperately need – working to lessen disparities and bridge the gap for people living with developmental disabilities across the country.

    What are some current resources for caregivers of family members?

More and more we are seeing support groups and networks specifically for siblings—siblings of people with, Alzheimer’s disease, as well as other disabilities. Siblings of individuals with developmental and intellectual disabilities have places to turn in The Sibling Leadership Network and The Sibling Support Project. Easter Seals also offers information, services and support to caregivers across the lifespan.

    What can other people in the family do to support those who are acting as primary caregivers?

Although family caregivers often find their caregiver role equally rewarding and challenging, respite breaks, information and professional services are all important support for primary caregivers. Respite allows primary caregivers to take time for themselves and/or their immediate families, pursue their own interests and, in some cases, continue working. Remote family members can offer to visit regularly to give the primary caregiver a break or to pay bills or arrange transportation and appointments. Local family can help with running errands, bringing their loved one to appointments, and simply helping him/her stay connected with the community through social or faith related activities.