Eldercare Voices: Building Platforms for America’s Family Caregivers

Victoria Walker, MD

The Family Caregiver Platform Project is a non-partisan group focused on including caregiving issues in state party political platforms across the country. We encourage grassroots efforts to educate and motivate policymakers to improve state and federal support for family caregivers and the frail older Americans for whom they selflessly provide support.

We use “family” to mean all those who are bound to the person who is ill or disabled, whether by friendship, relationship or law. There are many ways to improve the lives of caregivers. Options for action vary by state and community.

I am excited to welcome Community Catalyst as a new national partner of the Family Caregiver Platform Project. Community Catalyst’s state-based partners already provide leadership to state and local consumer organizations, policymakers and foundations working to change the health care system for the better. We share the goal of having a system that serves everyone, especially vulnerable members of society. The Family Caregiver Platform Project likewise believes that community leadership is essential to transforming the fabric of health care and social services that caregivers depend on.

Politicians must address the question of how we will care for people over 65 as they increase in number from 35 million today to 70 million by the year 2030. Currently, about 40 million Americans provide unpaid care for a family member or friend who is ill, disabled or aged. Family caregivers carry out their tasks as a labor of love, expecting little in return. Although the sense of connection family and friends provide may be priceless, their caregiving time does have a tangible calculable value – approximately $470 billion annually.

It makes sense, both economically and socially, to provide help for family caregivers so they can continue to keep loved ones at home, when that is the care recipient’s and  family’s desire. Home care is less expensive than institutionalization and is the option most families prefer. Family members often help with activities that go far beyond basic assistance with the activities of daily living. They also coordinate health care services, manage medications, and perform medical tasks. Often they are the ones administering injections or providing health monitoring, with minimal training in these tasks. Many care recipients have multiple health conditions and/or cognitive impairments which can make provision of care very complex. Caregivers often report feeling exhausted or overwhelmed, having too much to do, and too little time for themselves and their other responsibilities. Decline in the health of caregivers from the long-term stresses of providing care is a very prevalent and serious issue.

Now is a great time for concerned citizens to raise their voices and support those who quietly tend to the most vulnerable in our communities. Our goal is to raise awareness of caregiving issues as we move into the active 2016 political season. You can help move the political agenda forward by making your state political parties more aware of family caregiving as an important policy issue they need to address. It is easier than one might think to influence a state’s party platform. For instance, submissions for language additions or changes to the platform often can be made electronically by email or directly on the party website. Most of the political parties post calendars of local meetings where you can speak up to make your voice heard. Volunteers who have attended such meetings report feeling welcomed and say their message was well-received.

The Family Caregiver Platform Project‘s website – caregivercorps.org – provides more background about the project and a link to subscribe to our monthly newsletter. The website also provides downloadable templates you can use as starting points for a submission to a Platform Committee or Resolutions Committee in your state. There’s also an overview guide that explains how to classify your state party situation and decide what language will work best.

Working together – state by state, platform by platform – we can bring about the changes that will recognize and better meet the needs of our country’s dedicated family caregivers.

Victoria Walker, MD, is the National Coordinator of the Family Caregiver Platform Project. Dr. Walker is Chief Medical and Quality Officer for the Evangelical Lutheran Good Samaritan Society, the largest non-profit provider of long-term care and senior services in the U.S. She began her career as a family practice physician in a small Midwestern community. After several years providing community care, Dr. Walker shifted to working as medical director of a psychiatric hospital, where she focused on caring for those with dementia and challenging neuropsychiatric symptoms and advanced illness care. Dr. Walker is a Clinical Associate Professor in the departments of Family Medicine and Geriatrics at the University of South Dakota Sanford School of Medicine and is an APSA Congressional Health and Aging Policy Fellow