Each year, the Alzheimer’s Association puts out a report about the state of Alzheimer’s disease and related dementias in the United States. It further breaks down the data to the state level.
As someone who lives this reality daily as a caregiver for my husband, Tony, who was diagnosed with early onset Alzheimer’s disease in 2015, I am keenly interested in this report.
In the “2024 Alzheimer’s Disease Facts and Figures” report, the association estimates there are 6.9 million people aged 65 and older in the U.S. who are living with Alzheimer’s, including 250,600 here in Illinois.
The cost of Alzheimer’s care is projected to reach $360 billion this year, which is a $15 billion increase from a year ago. That doesn’t even include the unpaid care provided by friends and family caregivers like me. Last year, in Illinois there were 311,000 dementia family caregivers, providing 480 million hours of unpaid care, which was valued at $9.84 billion.
Not surprisingly, caregivers across the nation report experiencing emotional, physical and health-related challenges that come from caregiving. Some of the report’s findings:
* Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes and cancer compared with caregivers of people without dementia or non-caregivers. In Illinois, 64.2% of caregivers reported at least one chronic condition.
* The prevalence of depression is higher among dementia caregivers when compared with caregivers for other conditions. In Illinois, 29% of caregivers reported depression.
* Across the country, 59% of dementia caregivers report high to very high emotional stress due to caregiving and 38% report high to very high physical stress due to caregiving.
“The new Facts and Figures report sheds light on the continued pressures/challenges/burdens that many Illinois families are going through as a result of Alzheimer’s and other dementias,” Delia Jervier, executive director of the Alzheimer’s Association Illinois Chapter, said in a news release. “As the number of individuals living with Alzheimer’s continues to grow, ensuring patients, their caregivers and families have a clear understanding of how to navigate dementia care resources is critical to improving health outcomes.”
This year’s Facts and Figures comes with a special report, “Mapping a Better Future for Dementia Care Navigation,” which surveyed dementia caregivers and health care workers about their experiences, challenges, awareness and perceptions of care navigation in dementia care.
Not surprisingly, the top five stressors for caregivers are cost (reported by 42% of caregivers), coordinating with multiple doctors (36%), securing appointments (35%), getting help taking a break (35%) and finding appropriate doctors (32%).
Despite coordinating care and scheduling being top stressors for caregivers, only half of the caregivers surveyed have ever talked with a health care professional about challenges finding their way through the health care system or asked for help with dementia care.
The report found that most caregivers (97%) say they would find navigation services useful. Among the services cited most were a 24/7 helpline (36%), help coordinating care and communication between different specialists (34%), and getting help in understanding their care recipient’s condition (34%).
On the health care workers’ side, 60% of those surveyed believe that the U.S. health care system is not effectively helping patients and their families to navigate dementia care.
“The big takeaway from this year’s special report is that dementia caregivers want and need help navigating the complex health care system and accessing community-based services,” Olivia Matongo, vice president of programs for the Alzheimer’s Association Illinois Chapter, said in the release. “Given the added complexities of dementia care, we hope our report will encourage health systems and practices to think more intentionally about the challenges facing dementia caregivers and formalize dementia care navigation programs to help them.”
I couldn’t agree more. We caregivers have a lot on our plates. A streamlined system to find care and needed resources would be good not only for those we care for, but for us as well.
• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.
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