An estimated 40 million Americans provide unpaid care for a loved one. The same 2016 American Association of Retired Persons (AARP) Family Caregiving and Out-of-Pocket Costs: 2016 Report estimates those caregivers are spending just under $7,000 a year—or 20%--of their own money toward the care of their loved ones. The costs are higher for long-distance caregivers, and nearly double for those whose loved ones suffer from some form of dementia. More than half of family caregivers (56%) experience some financial strain through work, too, either cutting back on hours or taking time off.* The monetary toll is only part of sacrifice of these caregivers who also endure the emotional and physical strain of caring for an aging, disabled or otherwise vulnerable loved one.
November is National Family Caregivers Month. It’s celebrated each year to recognize the dedication and challenges for those who care for a loved one in the home. Family caregivers provide most of the assistance that enables older Arizonans and those with disabilities to live independently in their homes and communities. The Arizona Department of Economic Security (DES) Division of Aging and Adult Services (DAAS) provides support and assistance through the Family Caregiver Support Program (FCSP).
The program was formerly under the direction of the Arizona State Caregiver Coordinator. That position is now called Program Services Manager for Aging and Disability Services and is held by Michael Coen, who recognizes the burden—and the burnout—for caregivers. Those who care for their loved ones in the home have no set hours and no vacation time. It’s often stressful and difficult. For these reasons, caregiver support is crucial to avoid burnout.
“It’s much like having children when they’re young,” said Coen. “Caregivers are always ‘on.’ It’s incredible the amount of burnout you get when you’re taking care of [someone] 24/7, that’s why we have the respite program. It gives them time to do something for themselves.”
FCSP provides caregivers with resources, including:
- Information about available services.
- Assistance in gaining access to supportive services.
- Individual counseling, support groups and training related to the role of a caregiver.
- Respite care providing caregivers with temporary relief from their duties.
- Supplemental services to compliment care provided by caregivers.
The respite program not only helps caregivers, but benefits society, as well. Caregivers are the ones keeping the clients in the home. If it weren’t for them, more elderly people would be in nursing homes and the cost of housing them would drastically increase. The same is true for grandparents taking care of grandchildren.
“If the grandparents weren’t there taking care of the children, then they would be in foster care,” said Coen. “It is in the best interest of the grandparents and the children to make sure that the caregivers aren’t overloaded and stressed.”
"Alzheimer’s is a very personal process. It’s tough when somebody you loved for 50 years wants to punch you in the nose and doesn't know who you are. It's really, really tough. It's one of the hardest forms of caregiving you can do."
–Former Arizona Caregiver Coordinator David Besst, caregiver of his mother
DAAS works with eight Arizona Agencies on Aging (AAA), the Governor’s Advisory Council on Aging and the Governor’s Office on Aging to help seniors maintain their quality of life and remain in their homes in their communities. Coen, in his role, also supports the Arizona Caregiver Coalition (ACC). The ACC is funded through DES and also offers support and resources to caregivers in all situations, ranging from a grandchild caring for a sick grandparent, grandparents taking care of children—really, any person caring for someone who needs direct support. The ACC was founded by the former Arizona State Caregiver Coordinator, David Besst, who lost his battle with cancer last winter. Coen is doing his best to continue Besst’s work.
“I have big shoes to fill. David Besst was very plugged into the community in this area,” said Coen. “He was very much a mover and shaker, and got things done.”
In his fairly new role, Coen believes his biggest challenge will be meeting the needs of the rising elderly population.
“The population is continuing to age and the funding isn’t increasing,” said Coen. “With the limited resources, we are going to be stressed to meet the needs of the aging population.”
Governor Doug Ducey proclaimed November 2017 as Arizona Family Caregiver Month.
*Source: AARP: Family Caregiving and Out-of-Pocket Costs: 2016 Report
By Isabella Neal