For Families, Caregiving Happens Around the Clock

November is National Family Caregivers Month, recognizing the 43.5 million Americans who provide unpaid care to an adult or child every year. Family caregivers can include parents, siblings, adult children, and other family members who support loved ones with disabilities. Neighbors and close friends can also be included in this group. According to a survey by the National Alliance for Caregiving, these caregivers provide an average of 24.4 hours of care per week, but nearly a quarter of caregivers provide more than 40 hours of support per week. All of that care adds up: One estimate from AARP put the value of all of that caregiving at more than $470 billion a year, far exceeding the amount spent on paid home care in a year.

Current and completed NIDILRR research has looked at caregiving from several perspectives, from who provides care and how they support their loved one, to what educational, emotional, and financial supports these caregivers need to stay healthy, stay at work, and be effective in supporting their family.

The Family Support Research and Training Center has published research briefs on who supports people with disabilities and older adults and what types of services and care they usually provide. Their research shows that family supports play a critical role in the lives of adults with intellectual and developmental disabilities in particular.

It’s not just parents and adult children providing care, many siblings are also caregivers. The Family Support RTC shines a bright spotlight on siblings, how they support their brothers and sisters with disabilities, and how living with their sibling can affect their well-being. Their research shows that siblings may experience less choice and control than other family caregivers. In a video series from this center, self-advocates shared how their siblings support them and discuss how family support could be improved.

When talking about the experience of caregiving, it’s important to hear from both sides. The Northwest Regional Spinal Cord Injury System hosted two forums on caregiving, one on managing caregivers from the perspective of persons with disabilities and another on providing care from the perspective of caregivers.

Family caregivers can also bring unique perspective to the conversations on community living. The Rehabilitation Research and Training Center on Community Living and Participation of Individuals with Psychiatric Disabilities surveyed caregivers of people with psychiatric disabilities, offering a close-up view of the entrenched stigma and barriers that caregivers say their loved ones, and that they also, experience that impact many aspects of their lives.

Our Research In Focus series has covered recent research findings on caregiving from these and other NIDILRR-funded projects, including research on

Are you interested in more research and resources on family caregiving? Follow these links to explore the NARIC collection:

As always, the Information Services team is available Monday to Friday, 8:30am to 5:30pm to help you find the resources you and your family may need to stay healthy and engaged in your community.

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