Thank You, Caregivers!

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:

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.

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2 Responses to Thank You, Caregivers!

  1. Pingback: Answered Questions: Monthly News for the Disability Community for November 2016 | Collection Spotlight from the National Rehabilitation Information Center

  2. Pingback: Preguntas y Respuestas: Noticias Mensuales para la Comunidad de la Discapacidad para Noviembre 2016 | Collection Spotlight from the National Rehabilitation Information Center

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