This week, more than ever, we are thankful for the men and women who support loved ones with disabilities. More than 43.5 million people provide care to an adult or child in the US, according to the National Alliance for Caregiving and AARP. The majority of caregivers are supporting adults with disabilities, including older adults with age-related illnesses and dementia. Families are still the primary caregivers for adults with intellectual and developmental disabilities (I/DD). These caregivers are often family members or close friends and the care is “informal” or not provided through a paid relationship. A study from AARP puts the value of care provided by these informal caregivers at more than $470 billion.
Caregiving can be rewarding, but it can also be demanding, exhausting, and overwhelming, particularly for those who are not formally trained to provide care. It can start slowly, helping someone with household tasks or running to appointments, and grow into a full-time commitment including intimate tasks like bathing and feeding. Some families are thrust into the role suddenly, due to an accident or other medical crisis, and must respond quickly. Either way, caregiving can have a significant impact on families, affecting their financial resources, employment, and physical and emotional health and wellness.
Recent research from the NIDILRR community has looked at several aspects of caregiving:
- The Northwest Regional Spinal Cord Injury System held panel discussions on caregiving, from the perspective of individuals with spinal cord injuries and from both family and hired caregivers. Both groups talked about managing relationships, the challenges and rewards of caregiving, and what makes for a good caregiving situation.
- The Rehabilitation Research and Training Center (RRTC) on Family Supports recently looked at the role of siblings as caregivers, and how their experience may differ from parents or children who provide care.
- Researchers from this RRTC also edited a special issue of the Journal of Family Social Work on the topic of family supports across the life course. Read the introductory editorial free of charge.
- The RRTC on Community Living and Participation of Individuals with Psychiatric Disabilities surveyed nearly 500 caregivers of people with mental health conditions to understand their perspectives on community inclusion. This monograph offers 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.
- Two issues of our Research In Focus series shine a light on caregiving research:
- We highlighted a NIDILRR-funded study that looked at how the aging and I/DD caregiving communities differ and what they can learn from each other in their approaches to supporting caregivers and maintaining the independence of those receiving care.
- This week’s Research In Focus highlights the results of focus groups with people with SCI and caregivers on the challenges and rewards of caregiving.
- The NARIC Collection includes more than 400 articles, books, and reports from the NIDILRR community on the topic of caregiving. Some are available to download free of charge. Others may be ordered through our document delivery service.
We speak with caregivers every week, helping them identify resources online and in their community which can help support them as they provide care for a loved one. Some of the information and support resources we routinely recommend are:
- A local Area Agency on Aging and/or Aging and Disability Resource Center can connect individuals to community resources including paid care services, respite and adult day care, in-home assessments and supports, financial resources, nutritional support (such as meals-on-wheels or food pantries), and much more. Find a local office by searching at Eldercare.gov
- 2-1-1 is our go-to recommendation for a wide array of community supports, including the ones above. Call 211 or search at 211.org to find community providers, assistance programs, volunteer opportunities, libraries and recreation centers, transportation assistance, and more. A certified Information specialist will guide callers to the right programs in their area.
- Don’t forget the local public library! A friendly reference librarian can point patrons to books in their own collection, as well as reputable online information about conditions, treatments, and supports. Many libraries also have programs for seniors, caregivers, and people with disabilities!
- The Family Caregiver Alliance (FCA) and the National Center on Caregiving support and sustain the important work of families nationwide caring for adult loved ones with chronic conditions and disabilities. They offer a huge library of information and educational resources, as well as a searchable Family Care Navigator to find local support.
- Veterans and their families have a dedicated resource from the Department of Veterans Affairs. Look for a caregiver toolbox, services for family caregivers, and more.
- AARP conducts research and advocacy on caregiving, including the economic impact on informal caregiving. Visit their caregiving center to learn more about the cost of caregiving and to find caregiving resources.
- More than 75% of caregivers are women, and they may spend up to 50% of their time providing care, according to FCA. For these women, this may put a strain on work participation, and may take them out of the workforce altogether. This can have a significant impact on their future retirement. The Women’s Institute for a Secure Retirement has information on financial steps for caregivers to help protect their money and retirement.
- More research and development in caregiving is underway outside the NIDILRR community. Here’s a look at more than 1400 abstracts for articles published in the last 5 years, both in the US and internationally.
Americans are living longer, including Americans with disabilities, and family caregivers will continue to be essential to supporting their loved ones as they age. It can be both very challenging and very rewarding. Reaching out for help, online and in the community, can make it easier for everyone.