ASTHO’s Caregivers Learning Community Discusses Public Health Collaboration to Support Caregivers

September 29, 2017|9:33 a.m.| Tequam Tiruneh, MPH, Analyst, Health Promotion and Disease Prevention, ASTHO

Eighty seven percent of U.S. adults aged 65 and above want to stay in their homes and communities as they age, according to AARP. A study titled “The Meaning of Aging in Place to Older Peoplefound that one of the key reasons older adults prefer to age in their homes is their perception that it would allow them to maintain their independence and autonomy. As a result of this, studies have found that about 34.2 million Americans provided unpaid care to an adult age 50 or older in the last 12 months. Over the past decade, there has been a steady increase in the estimated value of services provided by informal caregivers. These include help with personal care and activities such as providing transportation and paying medical bills. The economic value of caregivers was $470 billion in 2013, which showed an increase from its estimated value of $370 billion in 2007. Informal caregivers are individuals who provide daily care to permanently or temporarily disabled family members or friends.

In 2016, ASTHO launched a Caregivers Learning Community to support states working with caregivers by providing them the opportunity to learn from national experts and the experiences of their peers across the country implementing similar programs. The learning community was aimed at equipping the participating states with knowledge and resources to supporting caregivers within the states. ASTHO conducted interviews with three of the participating states: Kirsten Aird from Oregon, Jacquilyn German and Dr. Victor Sutton from Mississippi, as well as Barbara Howe and Tracy Wohl from New Mexico to learn more about their ongoing work with caregivers and how participation in the learning community supported these efforts. Building up on statistics highlighted earlier, the interviews were also aimed at gaining information that can be shared with leadership at other agencies that are also planning to develop and implement programs for caregivers.


In the learning community, state health agency (SHA) representatives shared their process with ASTHO for developing programs and policies that support caregivers in their respective states. Mississippi indicated that data from the Behavioral Risk Factor Surveillance System (BRFSS) module has been key in identifying gaps and existing opportunities to drive their work. For instance, data from their 2015 BRFSS module indicated that 27 percent of adults ages 18-44 had provided care within the past 30 days, helping them to identify a target population of caregivers to focus their efforts. New Mexico discussed the important role that legislation has played in guiding their work with caregivers and promoting available resources. For example, the state passed a memorial  in 2014 that established a task force of governmental and non-governmental agencies and organizations to develop a state plan for family caregivers.

Additionally, each state highlighted that they look to ASTHO for guidance on the role of public health and state health officials in their work with caregivers. SHA representatives indicated that participating in ASTHO’s Caregivers Learning Community enhanced their ongoing efforts by allowing them to learn from other states and experts about best practices for supporting caregivers. For example, Mississippi says that by participating in the learning collaborative, they were able to gather information from conversations with stakeholders and SHA representatives to focus on developing increased capacity to address multiple aging efforts and position the agency to become more competitive for funding opportunities. 

Role of State Health Agencies

SHAs play an important role in the implementation of programs that support caregivers. SHAs often serve as a resource and point of contact for healthcare providers, medical associations, nurse associations, and other stakeholders (e.g., Area Agencies on Aging. SHA representatives noted that having access to data, for example BRFSS, has been beneficial in facilitating their collaborations with key partners and helping to focus their statewide caregiver initiatives to have the most impact. For example, the Oregon Health Authority assisted its Unit on Aging, Office of Disabilities and Health, and other partners in narrowing down priority areas of need among caregivers by using their data to identify gaps where the state can focus its efforts to address caregivers’ needs. The SHA also helped in bringing together the different partners, while also being a part of the conversation to guide the effort of identifying their goals. In addition, cooperative planning for statewide plans (e.g., State Health Improvement Plans) has served as an opportunity for SHAs and area agencies on aging to collaborate and align their goals where appropriate.

Partnerships and Collaborations formed from the Collaborative?

SHA representatives each agreed that working with key players have been critical in their work around caregivers. Some of the key players include: state Medicaid agencies, local chapters of the American Association of Retired Persons and the Alzheimer’s Association, state offices of rehabilitation services, professional organizations, and educational institutions. Each SHA also indicated that additional resources and tools to allocate state-specific data would be beneficial in moving their work supporting caregivers forward.  

Challenges States face in Implementing Programs Supporting Caregivers

One of the common challenges states are currently facing in implementing their caregivers programs is a shortage of funding. Although there is some funding that’s made available to states, such as the National Family Caregiver Support program (NFCSP), to improve the availability of caregiver support programs, it is still inadequate to ensure coverage of these services across states. Another challenge involves the lack of clarity in the definition of the term “caregiving” among the different partners and the public, making it difficult to target services to the appropriate population. As New Mexico pointed out, it seems most caregivers do not identify themselves as being caregivers and this could be a barrier in reaching caregivers with targeted interventions.  Finally, Oregon indicated the lack of a holistic policy approach to address caregivers’ needs across the lifespan makes it difficult to implement wide spread supports and infrastructure for Caregivers. A holistic approach includes community policy and environmental strategies that support healthy eating, active living and tobacco free lifestyles, access to affordable health care and worksite wellness strategies. While they recognize that it is important to acknowledge the varying needs of caregivers, a more inclusive advocacy effort around caregivers across the board is needed.

Looking Ahead

  • States should identify what data is available. For states that may not have data that is immediately available to them, Oregon emphasized working with partners to determine how and where to obtain data that will be useful in driving the work.
  • States should convene with partners to do background work prior to initiating projects. A suggested resource is the Healthy Brain Initiative Road Map, which can serve as a guide for states that are in the early stages of their work. New Mexico and Oregon also agreed on the importance of identifying opportunities for collaboration with partners, such as the Alzheimer’s Association, in order to leverage resources and knowledge.
  • New Mexico pinpointed the need to bring awareness to the needs of caregivers and making it a public health issue.
  • Mississippi recommended making the funding streams for healthy aging projects broader, to avoid competing for the same funds and allow financing of various projects under the same umbrella. 
Tequam Tiruneh, MPHTequam Tiruneh, MPH, is an analyst for Health Promotion and Disease Prevention at ASTHO, where she supports federally funded projects related to chronic diseases and the development of healthy communities, including the promotion of healthy aging and Hypertension prevention and control.