Caregiving In The United States

 

Much has been documented regarding the status of family caregiving in the United States.  After an extensive review of the literature, a number of key points have become apparent.  They are listed as follows:

 

  • Based on surveys, there are varying estimates as to how many family caregivers there are in the United States.  The results from these surveys range from 43.5 million to 95 million family caregivers.  Because of the wide range in the estimates in the number of caregivers in the United States, the average between the minimum and maximum values was computed, and for the purpose of CareCFA’s strategic development we estimate the number of family caregivers to be 69 million.  These figures are in alignment with the estimate of 66 million provided by Harvard Medical School.

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  • Family caregivers face socioeconomic as well as health related issues at a level higher than in the general U.S. population.

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  • There are approximately 194 independent (i.e., not affiliated with a health-care institution or a national organization) 501(c)3 nonprofit organizations in the United States.  These 194 501(c)3 nonprofit organizations are not evenly distributed within the United States.   Based on an analysis of organizations listed in Charity Navigator, 13 states do not have independent 501(c)3 non-profit organizations that have the terms “caregiver” or “caregiving” in their titles.  Further, there are an additional 17 states that have just one or two independent 501(c)3 non-profit organizations with the terms “caregiver” or “caregiving” in their titles.

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  • Thus, out of the Nation’s 50 states, 30 states have two or less independent 501(c)3 non-profit organizations with the terms “caregiver” or “caregiving” in their titles.  Residing in these states are approximately 27.3 million caregivers which comprise an estimated 39.6% of the U.S. caregiver population.

 

  • Based on an analysis of IRS 990, 990-EZ and 990-N forms submitted by the 194 501(c)3 nonprofit organizations, there was a cumulative annual revenue of $65,811,958.  This cumulative revenue resulted in an annual average of approximately $0.95 devoted to programs and services for each of the estimated 69 million caregivers in the United States.  

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  •  Based on the above analyses, there is clear evidence that there is a need for general support for family caregivers as well as for the community-based organizations whose missions are to assist family caregivers.  Further, there is a need to encourage and support the development of independent caregiver 501(c)3 nonprofit organizations in 30 of the 50 states in the United States.  Lastly, almost every nonprofit organization in the United States that is devoted to helping family caregivers needs additional support to remain sustainable and to fulfill their missions.

 

The Caregiver Coalition Fund of America is being developed to address the above-mentioned needs for family caregivers and community-based organizations whose missions are to serve family caregivers.  A number of strategies, programs and services are being developed to address these issues and as they are implemented, they will be highlighted on our website.  Among the more immediate programs and services under development by CareCFA are:

 

  • the development of a model caregiver 501(c)3 nonprofit organization that will foster the formation of independent caregiver nonprofit entities in states and communities in need of such community-based organizations;

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  • the establishment of a national family caregiver registry;

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  • the formation of a model program for the expansion of current collaborative relationships between non-profit organizations, for-profit corporations, educational institutions and local government agencies (e.g., Offices of the Aging, Offices of Social Services) for the development of comprehensive Community Care Partnerships;

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  • the identification of caregiving needs within specific population segments; in particular, those segments that are underserved;

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  • the development of e-caregiver programs that will address the needs of caregivers that reside in the United States and their care-recipients who live in another country;

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  • the formation of an endowment fund that will help to drive monetary and non-monetary resources to caregiver organizations throughout the United States.  This initiative will also include a grants program for community-based caregiver 501(c)3 organizations.

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As previously noted, much is being done in the United States to help family caregivers.  However, so much more needs to be done to support community-based 501(c)3 caregiver organizations as well as family caregivers.  The Caregiver Coalition Fund of America has developed a mission and operational plan to drive resources to the “front-lines” of caregiving so that there can be an even greater positive impact on the Nation’s 69 million caregivers.  

 

The performance of the Caregiver Coalition Fund of America is measured through one question: How Many Caregivers Have We Helped Today?  A donation to our GoFundMe Campaign will help us to say that we helped at least one more caregiver each day with the ultimate goal to say that we helped 69 million family caregivers.

 

Thank you.

Cofounders and Directors

Caregiver Coalition Fund of America

Caregiver Coalition Fund of America