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 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 90,800 Coloradans are among 6.9 million people ages 65 and older in the U.S. living with Alzheimer’s dementia. Approximately another 200,000 people across the country under the age of 65 are living with younger-onset Alzheimer’s.
This year the cost of caring for people living with Alzheimer’s and other dementias in the U.S. 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 Colorado, 177,000 dementia family caregivers provided 307 million hours of unpaid care valued at more than $7.2 billion.
The impact of caregiving on family caregivers
Colorado caregivers and those across the country face significant emotional, physical and health related challenges as result of caregiving.
According to the 2024 facts and figures:
• 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 Colorado, 58 percent of caregivers disclosed at least one chronic condition.
• The prevalence of depression is higher among dementia caregivers when compared to caregivers for other conditions. In Colorado, nearly 37 percent of caregivers reported depression.
• A total of 74 percent of dementia caregivers state they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. In Colorado, more than 15 percent cite frequent poor physical health.
• Across the country, 59 percent of dementia caregivers described high to very high emotional stress due to caregiving and 38 percent report high to very high physical stress.
“The 2024 Facts and Figures report sheds light on the continued pressures and challenges facing many Colorado families as a result of Alzheimer’s and other dementias,” said Jim Herlihy, spokesperson for the Alzheimer’s Association of Colorado. “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.”
Special report on dementia care navigation
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 health care workers on their experiences, challenges, awareness and perceptions of care navigation in dementia care.
Dementia care navigation 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 members and other caregivers of people living with Alzheimer’s or other dementias across the U.S. 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.
• A majority of caregivers (70 percent) report that coordination of care is stressful. More than half of the caregivers surveyed (53 percent) said that navigating health care was difficult. Two in three caregivers (66 percent) also have difficulty finding resources and support for their needs.
• The top five stressors for caregivers are: cost (reported by 42 percent of caregivers), coordinating with multiple doctors (36 percent), securing appointments (35 percent), getting help taking a break (35 percent) and finding appropriate doctors (32 percent).
• 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 percent) 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 vast majority of dementia caregivers (97 percent) say that they would find navigation services helpful. Services cited most often as helpful by caregivers include: a 24/7 helpline (36 percent), help with coordinating care and communication between different specialists (34 percent), and getting help in understanding their care recipient’s condition (34 percent).
One significant finding of the survey was that 60 percent of health care workers surveyed believe that the U.S. health care system is not effectively helping patients and their families navigate dementia care.
Nearly half (46 percent) say that their organizations do not have a clearly defined process for care coordination and clinical pathways for patients with mild cognitive impairment, 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 Herlihy. “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.”
