As a Utahn, I am proud to live in a state that openly values and supports family. As a researcher, I am part of a community calling attention to the hidden nature, value and needs of family caregivers.
A new report by the Kem C. Gardner Policy Institute, in partnership with the Family Caregiving Collaborative (FCC) at the University of Utah, highlights the value, and cost, of family caregiving in Utah.
It is estimated that more than 400,000 Utah adults care for a friend or family member with a disability or a serious illness. This is expected to increase at least 25% over the next eight years. While friend and family caregivers save the state billions of dollars annually, the emotional, mental and physical costs are growing as caregiver burden increases. Current local efforts can help but need public and taxpayer support.
Caregivers are people of all ages who care for a family or friend with a disability, illness, injury or condition requiring care. Many family caregivers are children and youth under the age of 18, and many care for veterans.
The Elizabeth Dole Foundation recognizes veteran caregivers as “Hidden Heroes” for their service to our military members, and also recognizes the “Hidden Helpers” – children and youth who support a Veteran parent or family member.
Statistics on these families is scant, but a national report on family caregiving has estimated that 3.4 million young people under the age of 18 are providing caregiving activities for an adult, and 2.3 million of these are in the homes of veterans.
Researchers with the FCC have partnered with Blue Star Families of Utah to gather data on the needs of military and veteran caregiving families in Utah. This data will inform research development through the VA Salt Lake City Health Care System, one of five sites nationwide associated with the VA Elizabeth Dole Center of Excellence for Veteran and Caregiver Research. Developing Utah-specific studies will help us align research to the needs unique to families within our state.
The National Alliance for Caregiving lists states that have been developing caregiving plans and assembling task forces. These include Alabama, California, Delaware, Hawaii, Idaho, Maryland and Mississippi.
For the past two years, FCC has been convening stakeholders to identify and prioritize shared goals and assemble data to describe the realities of caregiving in Utah. These activities provide the foundation for a state plan which aligns with the national strategy, could be used to guide and coordinate future policy efforts in Utah and can be implemented by all sectors and people.
And, as you read this, the 117th Congress is reviewing a proposal from the Florida-based Caregiving Youth Research Collaborative to designate the third week of November as National Caregiving Youth Week. This recognition would pave the way for research and policy to acknowledge the role young people play in caregiving alongside adults.
This work is near and dear to my heart. When I was 12, my parents adopted a child who had suffered a severe traumatic brain injury (TBI). I was so excited. While at the time, I did not think of the meals I cooked, the baths I ran and the amount of time I spent soothing him in the middle of the night or early morning so my parents could sleep as “caregiving,” now, as his adult legal authorized representative, I can definitively say the caregiving I did, and still do, for my brother has shaped my life. I am now a researcher and advocate for persons with disabilities, their caregivers, families, and community.
Please join me in celebrating National Family Caregivers Month by making efforts to support caregivers. You can review and comment on the National Family Caregiving Strategy by November 30, and reach out to Utah government officials with your caregiving story. Moreover, you can reach out to a family member, neighbor, or loved one who gives care to another and acknowledge the hard work they put in, borne out of love.
We are all carers, whether we are caregivers or not. We are Utahns.
Andrea Kalvesmaki
Andrea Kalvesmaki, Ph.D., is a research health science specialist in the Informatics, Decision-Enhancement, and Analytic Sciences (IDEAS) Center of Innovation, VA Salt Lake City Health Care System, and a research associate in the Division of Epidemiology in the University of Utah School of Medicine. She is a researcher for the Elizabeth Dole Center of Excellence for Veteran and Caregiving Research, and a member of the Utah Family Caregiving Collaborative and Caregiving Youth Research Collaborative. The views expressed in this article are those of the author and do not necessarily reflect the position or policy of the Department of Veterans Affairs, the United States government or the University of Utah.