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New Alzheimer’s Association Report Reveals Top Stressors for Caregivers and Lack of Care Navigation Support and Resources
— Report also provides latest statistics and information on Alzheimer’s prevalence, incidence, mortality and cost of care in Illinois and nationally —
CHICAGO, March 20, 2024 — The Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report reveals that both dementia caregivers and healthcare workers report difficulties in navigating dementia care within the U.S. healthcare system. The report provides an in-depth look at the latest national and state-level statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care. The new report estimates that 6.9 million people age 65 and older in the U.S. are living with Alzheimer’s dementia, including 250,600 in Illinois.
This year the cost of caring for people living with Alzheimer’s and other dementias is projected to reach $360 billion — a $15 billion increase from a year ago. This does not include unpaid care provided by family caregivers and friends. Last year in Illinois there were 311,000 dementia family caregivers, providing 480,000,000 hours of unpaid care valued at $9,840,000,000.
Illinois caregivers and those across the country face significant emotional, physical and health-related challenges as a result of caregiving as well, according to the report:
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Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes, and cancer compared to caregivers of people without dementia or non-caregivers. In Illinois, 64.2% of caregivers reported at least one chronic condition.
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The prevalence of depression is higher among dementia caregivers when compared to caregivers for other conditions. In Illinois, 29.0% of caregivers reported depression.
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Seventy-four percent of dementia caregivers report they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. In Illinois, 64% report frequent poor physical health.
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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,” said Delia Jervier, Executive Director, Alzheimer’s Association Illinois Chapter. “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.”
An accompanying special report, “Mapping a Better Future for Dementia Care Navigation, provides a comprehensive look into dementia care navigation by surveying dementia caregivers and healthcare workers on their experiences, challenges, awareness and perceptions of care navigation in dementia care. Dementia care navigation provides clinical and non-clinical support to people living with dementia and their caregivers to overcome barriers that compromise care and health outcomes.
Key findings:
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In 2023, 11.5 million families and other caregivers of people living with Alzheimer’s or other dementias provided an estimated 18.4 billion hours of unpaid help. On average, this represents nearly 31 hours of care per caregiver per week or 1,612 hours per caregiver per year.
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A majority of caregivers (70%) report that coordination of care is stressful.
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More than half of the caregivers surveyed (53%) said that navigating health care was difficult.
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2 in 3 caregivers (66%) also have difficulty finding resources and support for their needs.
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The top five stressors for caregivers are:
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Cost (reported by 42% of caregivers).
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Coordinating with multiple doctors (36%).
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Securing appointments (35%)
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Getting help taking a break (35%).
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Finding appropriate doctors (32%).
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Care navigation facilitates medical and social support to alleviate patient and caregiver stress. Despite coordinating care and scheduling being top stressors for caregivers, only half of the caregivers surveyed (51%) have ever talked with a healthcare professional about challenges finding their way through the healthcare system or asked for help with dementia care.
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Black and Hispanic caregivers report managing care on a daily basis (43% and 45%, respectively) compared to White caregivers (31%).
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The vast majority of dementia caregivers (97%) say that they would find navigation services helpful. Services cited most often by caregivers include:
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A 24/7 helpline (36%).
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Help with coordinating care and communication between different specialists (34%).
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Getting help in understanding their care recipient’s condition (34%).
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60% of healthcare workers surveyed believe that the U.S. healthcare system is not effectively helping patients and their families navigate dementia care. Nearly half (46%) say that their organizations do not have a clearly defined process for care coordination and clinical pathways for patients with mild cognitive impairment (MCI), Alzheimer’s disease or other dementia.
“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,” said Olivia Matongo, Vice-President of Programs, Alzheimer’s Association Illinois Chapter. “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.
Get additional statistics from the report for Alzheimer’s disease prevalence, mortality, cost of care, caregiving and dementia care workforce. Full text of the 2024 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, Mapping a Better Future for Dementia Care Navigation, can be viewed at alz.org/facts. The report will also appear in the May 2024 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.
About 2024 Alzheimer’s Disease Facts and Figures
The Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.
About the Surveys
A full breakdown of survey methodology used to inform the 2024 Alzheimer’s Disease Facts and Figures report and accompanying special report, Mapping a Better Future for Dementia Care Navigation, can be found on p. 98 of the report.
About the Alzheimer’s Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.
