Partnering to Help Caregivers & Families Thrive

30 Mar Partnering to Help Caregivers & Families Thrive

Posted at 08:00h in Advocacy, Caregiving by Triage Cancer

In today's guest post, we learn more about resources to support caregivers.

***

“You aren’t alone.”

“Ask for help.”

If you identify as a caregiver for a friend or relative with a chronic or other health condition, disability, or functional limitation, you have probably heard or come to realize the importance of seeking support from others during the marathon of caregiving. These messages certainly popped on my radar while caring for my mother, who had stomach cancer, and my father, who was diagnosed with dementia.

While I was a caregiver, I had two concepts of support. The first concept included help assisting my parents with activities of daily living, medical/nursing tasks and care coordination from unpaid friends and relatives or from paid health and direct care workers. The second included peer support groups and a broad range of formal and informal sources of support that helped me sustain my own physical and mental health and continue to care for my parents. Today, just over fifteen years to the date of my mother’s diagnosis and the start of my caregiving experience, I work with the National Alliance for Caregiving (NAC) to help ensure that caregivers and their families have access to a strong infrastructure (e.g., system of social and economic programs, policies, and resources) providing all of the above-mentioned supports.

As a 501(c)(3) charitable non-profit organization based in Washington, D.C, NAC represents a coalition of more than 60 non-profit, corporate, and academic organizations; nearly 40 family support researchers with expertise in pediatric to adult care to geriatric care; and more than 50 state and local advocates who support caregivers across the United States. On the international stage, NAC leads and participates in a number of global meetings on caregiving and long-term care. NAC founded the International Alliance of Carer Organizations (IACO), a global coalition that includes 16 non-governmental organizations.

The National Alliance for Caregiving was first established in 1996. Led by NAC’s founder, Gail Gibson Hunt, a group of national organizations aimed to address the public policy needs of families and to quantify the impact of one of the largest unpaid workforces in our society. NAC’s research and advocacy in that regard has played an important role in shaping public policy for family caregivers and those in their care. NAC has participated in multiple White House Conferences on Aging, joined national coalitions, and worked to provide education and information to inform the National Family Caregiver Support Program, the Lifespan Respite Act, the VA Caregiver Program, and progress toward a national strategy to support family caregivers under the RAISE Family Caregivers Act. As NAC celebrates its 25th anniversary, it continues its mission of building partnerships in support of a society which values, supports, and empowers family caregivers to thrive at home, work, and life.

One way that NAC builds partnerships is by conducting research on the caregiving experience of unpaid friends and family members, including the long-running research series Caregiving in the U.S. conducted in partnership with AARP, first published in 1997 and most recently in 2020. Over the year’s NAC’s research has expanded beyond aging-related eldercare issues to include research on the economic impact of caregiving, the business case for supporting family responsibilities in the workplace, children as caregivers, and disease-specific work in multiple sclerosis, diabetes, mental health, rare disease, Alzheimer’s disease, and cancer.

In addition, NAC builds partnerships by regularly engaging with advocacy groups across the nation to find solutions around the following priorities:

Expanding Caregiver Access to Supports and Services;
Investing in Caregiver Research and Evidence-Informed Practices;
Protecting the Financial Security of Caregivers;
Including Caregivers as a Vital Member of the Health and Human Service System; and
Enhancing the Health and Wellness of Caregivers.

However, policymakers need pathways that encourage sustainable marketplace solutions to not only support family caregivers, but also augment the care they provide. So, in addition to its research and advocacy work, NAC also encourages innovation by regularly publishing papers on the perspectives of, and challenges faced by, caregivers.

The heart of all of NAC’s partnerships in caregiving research, advocacy and innovation is a commitment to reflect and amplify caregivers’ lived experiences. We aim to highlight the voices of individual caregivers in of our work— from the individual caregiver experiences highlighted in our research reports, to our recent virtual community town halls on the impact of COVID-19 on caregivers and their families. If you would like to take part in future opportunities to inform and participate in this work–or just stay up to speed on important caregiving news—please consider subscribing to our weekly newsletter.

If you are interested in partnering with others in your community to ensure caregivers have access to the services and supports that help them and their families thrive, these coalition building resources can help you get started.

Karen L. Marshall is the National Alliance for Caregiving’s Director, Advocacy & Engagement. Feel free to contact her at karen@caregiving.org.