How Crisis Impacts the Way We Care

Prior to COVID-19, national research estimated that nearly 53 million Americans are caring for a friend or family member with a health care need or functional disability. Despite advances in technology in the last five years, and despite new efforts to improve the delivery of care under the Affordable Care Act and other programs, those who help with coordinating care for the person they support find it more difficult than in 2015 to access the health and long-term services and supports systems.

This difficulty in coordinating care as reported in NAC and AARP’s Caregiving in the U.S. 2020 study was fairly universal – impacting all age groups under age 75, all genders, and income groups, regardless of whether the caregiver felt they had a choice, whether they worked, and irrespective of where they live.

In response, the National Alliance for Caregiving and Adira Foundation have collaborated on a new framework that calls out the pressure points caregivers are facing in this crisis and interventions to support them. The framework is composed of two parts that, together, highlight the challenges caregivers face during a crisis, as well as the basic needs of caregivers.

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The purpose of the framework is to alert and inform policymakers, influencers, researchers, philanthropists, innovators, and other key stakeholders that COVID-19 has exposed the fragility and unsustainability of current caregiving paradigms. The framework will also be used for this website as a content map to assist with the identification of services, research, and programs that can help family caregivers navigate crisis. Rather than aggregate resources by a specific disease or condition, the Take Care Community site will offer concise, curated content, reviewed by nonprofit and NGO experts, and informed by the lived experiences of people who care for someone with a healthcare need or disability.

In the spirit of collaboration, we encourage you to explore the framework and accompanying white paper and share your feedback through the form below. We look forward to seeing how this framework adapts and changes as we learn more about caregivers and their needs.

Submit Feedback on The Framework

Name*
First Last
Email*
Can you describe your first impression of the format in a few words?*
How accurately do you think the framework describes the challenges to caring for others, whether near or far, present during COVID?*
How accurately do you think the framework describes the challenges to caring for yourself present during COVID?*
Are there more pervasive challenges you recognize through your experience that are not represented here?*
What challenges do you see delivering effective resources to caregivers who care for others that are near them or at a distance?*
What challenges do you see delivering effective resources to caregivers to care for themselves?*
How do you identify resources that are relevant for you as a caregiver or for other caregivers?*
What would make it easier to identify these resources to reduce decision fatigue?*
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