In 2016, more than 15 million family and friends provided 18.2 billion hours of unpaid care to individuals living with Alzheimer's, valued at over $230 billion. Last week, I had the opportunity to join policymakers, health care providers, and advocates at the Coalition to Transform Advanced Care (C-TAC) 2017 National Summit to discuss the impact of caregiving and how public policies can provide stronger support for family caregivers.

During the panel "What do Caregivers Need Most? Learnings from Current Research," I joined other experts to discuss research on the effects of family caregiving, successful caregiver interventions and services, and caregiver engagement. A recent study conducted by C-TAC, in partnership with the Cigna Foundation, analyzed 6,700 conversations from websites visited by family caregivers in order to describe the current state of family caregiving in the United States. The study found caregivers experience a wide range of emotions during the caregiving process, including grief, mental fatigue, and fear/anxiety. The study also revealed that caregiving affects caregivers' social lives, personal relationships, careers and financial stability.

These findings are similar to research conducted in 2016 by the Alzheimer's Association which examined the costs of caregiving. Families of individuals living with Alzheimer's reported making great financial sacrifices to care for those with the disease. Twenty percent of survey respondents reported spending money from their own retirement accounts in order to help pay for dementia-related expenses, jeopardizing not only their financial security but also the financial security of future generations.

In addition to the financial toll of caregiving, the Association study also found caregivers experience negative effects related to employment and health. More than 1 in 6 Alzheimer's and dementia caregivers had to quit work entirely either to become a caregiver or because the duties of caregiving became too burdensome. Nearly 60 percent of Alzheimer's and dementia caregivers rate the emotional stress of caregiving as high or very high. Caregivers of a spouse with Alzheimer's or other dementia are more likely than married non-caregivers to have high levels of stress hormones, reduced immune function, coronary heart disease, and increased incidence of hypertension.

It is clear, the individual living with the disease is not the only person affected by Alzheimer's. At C-TAC we discussed the clear need for additional support for caregivers. We also highlighted the need for additional research to explore what interventions work best for different caregiving scenarios. The panel also noted the importance of engaging former caregivers as advocates to build support for federal and state caregiving legislation. Finally, the panel recommended utilizing former caregivers as resources, particularly for current caregivers.

AIM and the Alzheimer's Association are advancing legislation that can have a meaningful impact on caregivers. We are proud to support the RAISE Family Caregivers Act (S. 1028 / H.R. 3759), which would create a national strategy to address many of the issues faced by caregivers including education and training, long-term services and supports, and financial stability and security. In addition to supporting legislation, the Association is dedicated to providing resources to caregivers through programs, as well as a 24/7 helpline providing reliable information and support to all those who need assistance navigating the challenges of Alzheimer's.

Policymakers must act to provide support for our nation's caregivers. Learn more about our policy priorities and to take action here.