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 New York State and nationally —
The Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report reveals that both dementia caregivers and health care workers report difficulties in navigating dementia care within the U.S. health care system. The new report estimates that 6.9 million people age 65 and older in the U.S. are living with Alzheimer’s dementia, including 426,500 in New York State.
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 New York, there were 543,000 dementia family caregivers, providing 879 million hours of unpaid care valued at nearly $19 billion.
New York State caregivers and those across the country face significant emotional, physical and health-related challenges as result of caregiving as well, according to the report:
Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes, and cancer compared to other caregivers. In New York, 59% of caregivers reported at least one chronic condition.
The prevalence of depression is higher among dementia caregivers when compared to other caregivers. In New York, nearly 25% 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 challenges and burdens that many Western New York families are going through as a result of Alzheimer’s and other dementias,” said Amanda Nobrega, vice president of programs for Upstate New York Chapters of the Alzheimer’s Association. “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, which provides clinical and nonclinical support to people living with dementia and their caregivers to overcome barriers that compromise care and health outcomes.
Key findings:
In 2023, 11.5 million family 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.
A majority of caregivers (70%) report that coordination of care is stressful.
More than half of the caregivers surveyed (53%) said that navigating health care was difficult.
2 in 3 caregivers (66%) also have difficulty finding resources and support for their needs.
The top three stressors for caregivers are:
Cost (reported by 42% of caregivers)
Coordinating with multiple doctors (36%)
Securing appointments (35%)
More Black and Hispanic caregivers report managing care on a daily basis (43% and 45%, respectively) compared to White caregivers (31%).
The vast majority of dementia caregivers (97%) say that they would find navigation services helpful
60% of health care workers surveyed believe that the U.S. health care system is not effectively helping patients and their families 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,” Nobrega said. “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.