Family Caregiving: A New Strategy to Address an Issue that Touches All of Us

By Alison Barkoff, Acting Administrator and Assistant Secretary for Aging

Are you a family caregiver? Do you know someone who is? Chances are, you’ll either be one – or need one – at some point during your life.

Many people who provide support to make it possible for a loved one to age in place, or to support someone with a disability so they can live in the community, do not think of themselves as caregivers. Instead, friends and family see themselves as simply doing what needs to be done to assist a person they care about. For some people, caregiving progresses slowly over time as a loved one’s needs increase. Other family caregivers find themselves suddenly thrust into the role of family caregiver in response to a medical crisis or the birth of a child with a disability. Caregiving touches every aspect of a caregiver’s life, including work, school, errands, and vacation.

In other words, “Caregiving Happens”– a phrase that is the theme for this year’s National Family Caregivers Month, which is marked every November.

At any given moment, more than one in five Americans are serving as family caregivers. These caregivers provide assistance that makes it possible for millions of older adults and people with disabilities to live more independently, with dignity, self-determination, and a better quality of life. Another 2.7 million grandparents – and an unknown number of other relative caregivers – serve as primary caregivers for children whose parents were unable to do so.

Family caregivers are the backbone of our nation’s system of long-term care, often filling gaps left by the limited availability of services and supports provided by the paid direct care workforce. They assist with common daily activities like transportation and grocery shopping, as well as with more complex tasks such as wound care, medication management, and care coordination. They all deserve recognition, support, and assistance. That’s why a focus on strengthening support to family caregivers can be seen across ACL’s work.

At the core of ACL’s support for family caregivers is support for the development and release of the 2022 National Strategy to Support Family Caregivers. This strategy was developed jointly by the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren to provide a roadmap for federal agencies, states, communities, and a variety of public and private sector entities for greater recognition, inclusion, and support for family caregivers. This work will continue with the appointment of two new councils early in 2023.

The strategy is an important contribution to the Biden-Harris Administration’s broader efforts to strengthen the care infrastructure. These efforts include a wide range of policy initiatives and new investments in making affordable, quality childcare more available to working families, expanding access to home and community-based services, growing and strengthening the direct care workforce, supporting family caregivers, and more. These work together to advance equity, strengthen our economy, reduce health care costs, and improve lives.

ACL also administers several long-standing programs with rich histories of supporting family caregivers, including the National Family Caregiver Support Program, the Alzheimer’s Disease Programs Initiative, and the Lifespan Respite Care Program . These programs support family caregivers in every state, territory, and tribal community. The Community Care Corps program was started in 2019 to support innovative local models in which volunteers assist family caregivers, older adults, and adults with disabilities with nonmedical care. This extra support helps them maintain their independence. Many of the models being developed by this program today will become standard practice in the future.

ACL programs also provide training for the tasks caregivers will perform. We know from research that training and education can improve the caregiving experience for the both the caregiver and the person receiving support. It can lead to better outcomes and a greater likelihood that both the caregiver and person receiving care remain active and engaged in their community. Training also is important to ensure that the rights of the person receiving support, such as their privacy rights under HIPAA, are protected.

Newer programs, such as the National Rehabilitation Research and Training Center on Family Support (funded by ACL’s National Institute on Disability, Independent Living and Rehabilitation Research), are also working to increase public awareness of caregiver needs and the interventions and policies that can help meet those needs.

Supporting family caregivers also means growing and strengthening the direct care workforce. These professionals provide critical services that support the autonomy and independence of people of all ages. However, low wages, limited training and benefits, and few opportunities for career advancement have resulted in a long-standing shortage of these professionals that has reached crisis proportions during the COVID-19 pandemic. As a result, more than three-quarters of home and community-based service providers are turning down new referrals, and more than half have cut services, both of which significantly increase the demands on family caregivers.

That’s why ACL launched a new Direct Care Workforce Capacity Building Center earlier this year. The center will provide technical assistance to states and service providers and facilitate collaboration with stakeholders to improve recruitment, retention, training, and professional development of direct care workers.

Another newly established ACL-funded initiative is the Grandfamilies and Kinship Support Network: A National Technical Assistance Center, which is being developed by Generations United and five national partners. The center will increase the capacity and effectiveness of states, territories, tribes and tribal organizations, nonprofits, and other community-based organizations to serve and support grandfamilies and kinship families.

As we close National Family Caregivers Month, I urge you to I urge you to read the 2022 National Strategy to Support Family Caregivers and look for ways you can increase awareness of the needs of family caregivers – and how you and the organizations with which you engage can address them.

Do it for the family caregivers in your life, but also do it for yourself – if it hasn’t already, chances are that one day, caregiving will happen to you, too.