ELLY GRIMM
• Leader & Times
According to the Centers for Disease Control and Prevention (CDC), more than 11 million U.S. adults provide unpaid care for someone with a form of dementia and in 2023 alone, caregivers provided about 18.4 billion hours of care to someone with dementia.
The Alzheimer’s Association reports nearly 75 percent of Alzheimer’s and dementia caregivers are somewhat or very concerned about maintaining their own health since becoming a caregiver, and more than 1 in 3 dementia caregivers say their health has gotten worse due to their care responsibilities. More than one-fourth of dementia caregivers also report delaying or skipping things they should to maintain their own heath.
With such numbers, Kansas Department for Aging and Disability Services (KDADS) announced it is launching two new initiatives: the Kansas Respite for Alzheimer’s and Dementia Program (K-RAD) and the “Kansas Dementia Roadmap: A Guide for People Impacted by Dementia.”
“In Kansas, more than 55,000 individuals are living with Alzheimer’s disease or related dementia, and more than 89,000 individuals are providing unpaid care,” a release from KDADS noted. “Families serve as the primary source of support for older adults and people with disabilities across the nation. According to the 2022 National Strategy to Support Family Caregivers report developed by the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren, gaps in the availability of and access to respite care can add to the stress and burden faced by unpaid caregivers. Respite care often comes with high costs and limited availability, leaving caregivers responsible for most expenses.”
Kansas has allocated funding for a state-funded respite program to address these challenges. The K-RAD program offers relief to unpaid caregivers of individuals with Alzheimer’s or related dementia by providing temporary care services that replace the direct care given by the caregiver for short or intermittent periods, the KDADS release noted
“We are excited about the K-RAD program and the ability it provides our agency to help our caregivers with respite care for their loved ones,” Leslea Rockers, Executive Director for East Central Kansas Area Agency on Aging, noted in the KDADS release. “Caregivers can apply for K-RAD funds to cover respite care costs.”
More information is available on the KDADS Web site, and applications can be obtained through local Area Agencies on Aging or by contacting the Aging and Disability Resource Center at 1-855-200-2372.
“Additionally, KDADS has introduced the ‘Kansas Dementia Roadmap: A Guide for People Impacted by Dementia.’ This resource acknowledges that caring for someone with memory loss or dementia is a long and unpredictable journey,” the KDADS release noted. “The Roadmap provides essential guidance, support, and information for families, helping them navigate the challenges of dementia care.”
“This roadmap will help families navigate their dementia journey so that they won't become lost in the diagnosis,” Jamie Gideon, Kansas Director of Public Policy for the Alzheimer’s Association, noted in the KDADS release.
The Alzheimer’s Association noted how caring for an individual with Alzheimer’s can have a negative effect on employment, income, and financial security.
“Among Alzheimer’s and dementia caregivers who are employed full or part time, 57 percent said they had to go in late, leave early, or take time off because of their caregiving responsibilities,” the Alzheimer’s Association noted. “In addition, 18 percent had to go from working full time to part time; 16 percent had to take a leave of absence; and 8 percent turned down a promotion due to the burden of caregiving. More than 1 in 6 Alzheimer’s and dementia caregivers had to quit work entirely either to become a caregiver in the first place or because their caregiving duties became too burdensome. Among female caregivers, 17 percent believe they have been penalized at work because of the need to care for someone with Alzheimer’s.”
The Family Caregiver Alliance notes other negative effects on caregivers of those with Alzheimer’s Disease or dementia.
“While researchers have long known that caregiving can have harmful mental health effects for caregivers, research also shows that caregiving can have serious physical health consequences. Further supporting this is the fact that 17 percent of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities,” the Family Caregiver Alliance noted. “Caregivers reporting fair or poor health increases from 14 percent within first year to 20 percent after five years or more of providing care. Those caring for a spouse are most likely to report fair or poor health. Caregivers who provide care for persons with dementia risk comprising their immune systems for up to three years after their caregiving experience ends, thus increasing their chances of developing a chronic illness themselves, and the physical and emotional impact of dementia caregiving resulted in an estimated $9.7 billion in healthcare costs in 2014.”
Printed copies of the Kansas Dementia Roadmap are available at local Area Agency on Aging and Alzheimer’s Association offices. A downloadable version is also available at https://www.kdads.ks.gov/services-programs/aging/alzheimer-s-disease-and-dementia/kansas-dementia-roadmap.
